Roundtable Discussion on the Compassionate Care Act

1 BEFORE THE NEW YORK STATE SENATE

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ROUNDTABLE DISCUSSION ON 3

THE COMPASSIONATE CARE ACT 4

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Albany, New York 7

March 12, 2014, at 10:00 a.m. 8 9 10 PRESIDING: 11 Senator Diane J. Savino 12 13 PRESENT: 14 Senator David Carlucci 15 Senator Mark Grisanti 16 Senator Ruth Hassell-Thompson 17 Senator Brad Hoylman 18 Senator George D. Maziarz 19 Senator Joseph Robach 20 Senator Malcolm A. Smith 21 Senator David Valesky 22 Assemblyman Matthew Titone 23 24 25 1 SPEAKERS: PAGE QUESTIONS 2 Cindy Gold Tangney 5

Parent Advocate 3 Chester, New York 4 Susan Rusinko 10

Patient 5 Resident of Auburn, New York 6 Donna Romano 20 26

Patient 7 Resident of Syracuse, New York 8 Meg Sanders 31 38

CEO 9 Gaia Plant-Based Medicine 10 Charles Feldmann 31 38

Corporate Counsel for 11 Gaia Plant-Based Medicine

Partner at Feldmann Nagel 12

Dean Petkanis 57 63 13 Co-Founder, Chairman & CEO

Thomas Kikis 14 Co-Founder and Partner

KannaLife Sciences 15

Jake Schrader 75 81 16 Co-President

Articulated Investors 17

Jason Pinsky 90 101 18 Chief Technology Officer

United Cannabis Corp. 19

Susanne Truesdale 102 20 Patient

Clifton Park, New York 21

Amy Reising 105 110 22 Co-Founder

Veterans for Alternative Care 23

Leo Feit 105 110 24 Veterans Advocate 25 1

SPEAKERS (Continued): PAGE QUESTIONS 2

Kunle Martins 105 110 3 Veterans Advocate 4 Kate Hintz 113

Parent 5

Missy Miller 113 6 Parent 7 Polly VanderWoude 113

Parent 8

Joe Fontana 136 9 Political Director

Local 338, RWDSU 10

Ed Pichardo 136 11 On Behalf of the

Worker's Compensation Alliance 12

Liz Delureficio [ph.] 143 13 Parent Advocate 14 Hillary Savoie [ph.] 143

Parent Advocate 15

Mike and Felicia Russo 143 16 Parent Advocates 17 Airelle Gerard 152

Current Medical Student 18

Donna Schwier [ph.] 152 19 Registered Nurse, and a Patient 20 Kira Coburn 161 21 Dawn Carney 161

Patient Resident of Auburn, New York 22

Andrei Bogolubov 161 23 Vice President

PalliaTech 24

---oOo--- 25 1 SENATOR SAVINO: So, good morning, everyone. 2 I'm State Senator Diane Savino, and I am the 3 main sponsor of the Compassionate Care Act of the 4 New York State Senate. 5 I am joined here by my colleague in the 6 Senate Majority Coalition and the Independent 7 Democratic Conference, Senator David Carlucci from 8 Rockland County. 9 We will be joined, on and off, during our 10 period, by members coming from all over the Senate, 11 and, potentially, some members from the Assembly are 12 going to pop in, as we commence this roundtable on 13 the Compassionate Care Act in the Senate. 14 First, I want to say to everyone, thank you 15 for your support for this piece of legislation. 16 You are predominantly responsible for the 17 movement in the Senate that has occurred in the past 18 six months, and you should give yourselves a round 19 of applause for that. 20 [Applause.] 21 SENATOR SAVINO: A year ago, people said that 22 this bill was dead on arrival in the Senate. 23 We knew better, and, we worked very 24 aggressively to begin to change people's minds. 25 And what we're doing today is trying to 1 change the last few minds that are out there. 2 Fifteen minutes ago, Senator Joe Addabbo from 3 Queens popped his head in; I introduced him. He 4 announced that he is now a new "yes" vote. 5 So we are building members. We have way more 6 votes than we need to pass the bill right now. 7 Now it's about getting it through the 8 legislative process, and trying to snag a few more 9 members on the way. 10 So, we're going to start today with our first 11 speaker, Cindy Gold Tangney, who's a parent 12 advocate. 13 Her granddaughter is, right now, in Colorado, 14 and Cindy is going to tell her story. 15 Come on down, Cindy. 16 [Applause.] 17 CINDY GOLD TANGNEY: Good morning. 18 SENATOR SAVINO: Good morning. 19 CINDY GOLD TANGNEY: I love seeing all the 20 kids here today. 21 And, I just want to let you know that I don't 22 have my granddaughter here today, but she is on 23 the -- in on the cover of several newspapers, and 24 she's in Colorado right now receiving treatment of 25 medical marijuana. 1 So what I want to do this morning is tell you 2 why I became an advocate for medical marijuana. 3 My granddaughter Mabel Grace was born in May, 4 and at 5 weeks old she started having seizures. 5 She was admitted to Columbian Presbyterian 6 Medical Center in New York and spent three weeks 7 there. 8 Imagine having a baby having more than 9 20 seizures a day and not knowing what's going on. 10 And the doctors were quick to offer drugs like 11 phenobarbital and TOPAMAX and Depakote. 12 During the three weeks, Mabel had many tests, 13 scans, EEGs, blood work, to determine what her 14 problem was. 15 We never found that out after three weeks, so 16 we came home with the baby, still with seizures. 17 And after a few months went by, she was then 18 diagnosed with infantile spasms, and the only thing 19 the doctors had to offer us at that time was more 20 drugs. 21 The side effects of the drugs on a 22 5-month-old baby is amazing. They don't prescribe 23 these drugs to children under 4 years old. 24 So we came home. 25 She was diagnosed with the infantile spasms, 1 and they added another drug, and this time they 2 added a drug called "SABRIL." 3 SABRIL, you can become blind from SABRIL; so 4 that's one of the side effects of SABRIl. 5 So over the course of time, Mabel tried and 6 failed five drugs. 7 In August, we watched the documentary 8 "Weeds," by Sanjay Gupta, and my daughter and 9 I looked at each other, along with my son-in-law, 10 and we knew that we had to try that. Maybe that 11 would be the answer for Mabel. The drugs were not 12 helping her. 13 In September, she was diagnosed, after some 14 genetics tests, with a very rare genetics disorder 15 called "CDKL5," and CDKL5 presents itself with early 16 onset of seizures. 17 We knew we had something to do. We knew did 18 not have a lot of time, and we went -- we drove to 19 Vermont, and we met Paige Figi and Joel Stanley, and 20 they gave us hope. And they said, in Colorado, 21 Charlotte Figi was using something called 22 "Charlotte's Web." And we heard about it in the 23 documentary by Sanjay Gupta. 24 We then drove out to Mineola, and we 25 testified there in front of Assemblyman Gottfried. 1 And, soon after then, we realized that 2 Colorado was the only answer, that the state that we 3 lived in, that I raised my children in, my daughter 4 lived in, was not going to give her what she needed; 5 at least the opportunity to try. 6 We don't know if that's the answer, but how 7 do we know if we don't try. 8 So she left her -- she's gone now for 9 58 days. 10 I call Governor Cuomo daily and remind him 11 that she's gone another day. 12 She left her support system, her husband who 13 needs to be home in New York State to work, to 14 support them in Colorado. 15 So I'm here asking you to support the 16 Compassionate Care Act, whoever here needs to hear 17 that. 18 My daughter and granddaughter deserve the 19 right to live in their state and have a medication 20 that's prescribed by their doctor. Not by lawmakers 21 making decisions; by their doctor. Her doctor would 22 prescribe this if she was living in New York State. 23 I wonder if anyone saw the documentary 24 "Weeds" last night? I know it was late. 25 SENATOR SAVINO: No. 1 CINDY GOLD TANGNEY: I called a lot of 2 Senators yesterday and asked them if they would 3 please watch it or tape on it, or somebody watch it, 4 because the information is something that people 5 have to listen to; they need to hear this 6 information. 7 So in closing, I would like to say: 8 That if it was any one of your children, what 9 would you do? 10 You would probably go to the ends of the 11 earth, which is what my daughter is doing, and I'm 12 very, very proud of her. She's living in Colorado 13 by herself. 14 She's actually in the home of Paige Figi, in 15 the article in "People Magazine," if people haven't 16 seen it. 17 And, they're going to -- and she's going to 18 try the Charlotte's Web very soon. She was on a 19 waiting list. 20 As people know, when you get out in Colorado, 21 you can't just automatically try Charlotte's Web. 22 She went to two doctors that prescribed it. 23 And, hopefully, within the next couple of weeks that 24 will be what she's going to do. 25 So maybe this won't work, but we are going to 1 try it. 2 So I ask that you please support the 3 Compassionate Care Act, and us parents will do 4 anything that we have to do. 5 I appreciate all your hard work. 6 Thank you very much. 7 [Applause.] 8 SENATOR SAVINO: We've been joined by 9 Senator Dave Valesky, on the end, another member of 10 the Independent Democratic Conference and the 11 Coalition; 12 And, Senator Mark Grisanti from the 13 Coalition, who was the first Republican to come out 14 publicly and support the Compassionate Care Act. 15 [Applause.] 16 SENATOR SAVINO: Our next -- 17 SENATOR GRISANTI: I understand we dragged a 18 few others. 19 SENATOR SAVINO: Yes, we've dragged a few. 20 And a few more. They'll keep coming. 21 The next speaker is Susan Rusinko, who 22 suffers from MS. 23 [Applause.] 24 SUSAN RUSINKO: Thank you for allowing me to 25 speak today, before I forget that. 1 My name is Susan Rusinko. I am 52 years old. 2 I'm happily married to Joe for 26 years. 3 I often joke with him that he got the worse 4 in the "for better, for worse." He always tells me 5 "no." 6 I do have an extraordinary husband. 7 I have three sons. Nicholas is 24, and 8 I have identical twins who are 21. 9 I'd like you to understand my journey a 10 little bit prior to my diagnosis with 11 multiple sclerosis, so you can understand why I -- 12 what I'm doing. 13 I was born and raised in Auburn, New York, in 14 a large Italian, Catholic family; five boys, 15 five girls. I am number seven, and the favorite. 16 My parents are 85 years old. 17 Eight out of ten of us reside in Auburn, 18 New York, to this day, and every Sunday, we still go 19 to my parents house for Sunday dinner. 20 My sisters are my closest and dearest 21 friends, and we do not generally make a plan unless 22 we've spoken to one another. 23 My mother and four sisters and I go away 24 shopping Thanksgiving weekend, Friday, Saturday, 25 Sunday; no husbands, no kids. 1 It's a time that we -- that I cherish, and 2 I've done it since before I was married. 3 Each of us girls also has a pie to bake at 4 Thanksgiving, and specific Italian cookies and 5 breads for Christmas. 6 Family really is such an important part of my 7 day-to-day life. 8 Now, from the time our sons were small, my 9 husband said to them: That you could play any sport 10 you want, except for hockey. 11 While our oldest son, Nicholas, played a 12 sport for every season from the age of 5, until he 13 graduated high school. 14 So when Jacob and Noah turned 5, they 15 decided, hey, they'd like to try a few sports, as 16 well. 17 After they got through Pony League, though, 18 Jacob and Noah decided that sports weren't for them, 19 so they decided to start playing piano, electric and 20 bass guitar, and even drums. And to this day, 21 I have music in my home every day. 22 We were a very active family. We rode bikes 23 you know, I roller-bladed to Barry White. Life was 24 good. 25 In February, we took our very first family 1 vacation -- in February of 2000, we took our first 2 family vacation, to Disney World, six nights and 3 seven fun-filled days. It was fabulous, but I was 4 exhausted. 5 It is a small world after all, so no sooner 6 had we gotten off the Tea Cups, we got onto a whole 7 nother cup of tea. 8 When I was diagnosed with multiple sclerosis 9 in 2000, at the age of 38, Nicholas was 10 and in 10 fifth grade, and Jacob and Noah were 7 and in 11 second grade. 12 I was teaching two water-aerobic classes a 13 day, five days a week, as well as waiting tables 14 two nights a week at a fine-dining restaurant. 15 I started noticing little things: tingling, 16 numbness. I was dropping things on a pretty regular 17 basis. A butter dish, that first year, just never 18 stood a chance in our house. 19 My vision became blurry. I had bladder and 20 bowel issues. 21 Things were going really haywire. 22 So on Friday, April 14th of 2000, I woke up, 23 and my right leg kept giving out on me like it 24 wasn't even there. It just wouldn't support me. 25 So my husband's off to work, my sons are off 1 to school, and little did any of us know it would be 2 four weeks before would I return to that kitchen. 3 Imagine kissing your mother goodbye and not 4 seeing her in your home for four weeks. 5 I was at Upstate Medical Center for one week 6 in Syracuse, and then deemed not safe to return home 7 in that condition. So I was sent to St. Camillus 8 Rehab Center in Syracuse for three weeks of 9 intensive therapy. 10 I was taught how to do any and all household 11 chores from the comforts a wheelchair. I learned to 12 walk with a brace. 13 I was good to go home. 14 I finally got to climb the front porch of 15 our -- into our new life. 16 Now I'm thinking, Great, I can do everything 17 I need to do at home, but, Nicholas is 10, Jacob and 18 Noah are 7; they're boys, through and through. 19 Am I still going to be able to keep up? 20 What if I am not able to care for my own 21 children? 22 As a mother, I wanted to be able to keep up. 23 I wanted to be there for their first catch, hit 24 tackle, touchdown, basket. I wanted to be there 25 when they strapped on their guitars and sat down to 1 their first piano recital. 2 When my legs became stiffer and painful, 3 I became more fatigued, my energy was level 4 depleted. 5 I really thought, there has to be a better 6 way. 7 I have to be able to cook for my family and 8 bake for my family, I have to try to keep my house 9 clean, and still have enough energy to enjoy my 10 family. 11 I am a good patient. I do agree with my 12 neurologist most of the time. 13 However, one symptom starts and you get a 14 medication. And then another symptom starts, so you 15 get another medication to stop that symptom. 16 So by 2003, now I'm on 17 pills, and at home, 17 on the couch, in a prescribed drug-induced haze. 18 I wasn't living my life. 19 I wasn't able to go to any sporting events. 20 I couldn't leave my house. 21 When you have bladder and bowel issues, 22 you're not leaving your house. 23 So there my husband goes with my three sons, 24 and I'm still stuck at home. 25 So, it was time for me to advocate for 1 myself. 2 I spoke with my neurologist, and said: 3 I really -- I'm tired of what I deem as the 4 "Elvis plan"; something to wake me you, something to 5 help me sleep. It's not my life. 6 So he decided -- when I spoke with him, 7 I said to him that I need to be weaned -- I need to 8 get off of this medication, and I am also going to 9 smoke marijuana illegally. 10 Of course, his very first thing he said to me 11 was: Oh, my gosh, are you going to be able to get 12 it from a safe place? 13 So, now I also have the added worry about my 14 parents and my family and our children and friends, 15 and what this could do to my family. 16 How could I explain to my elderly parents, 17 how would my parents explain to their friends at the 18 YMCA, that their daughter's name -- why their 19 daughter's name was in the paper? 20 But, again, I wanted to live my life. 21 I wanted to be able to be active in my children's 22 life. I wanted to cook dinner, I wanted to bake. 23 So as our sons got older, I did share with 24 them that I am smoking marijuana. 25 And of all the times, I was so nervous, 1 putting all of us in jeopardy. 2 My boys said to me: Mom, we want you to do 3 whatever is going to help you have a better day and 4 a good life. 5 I wondered if they were embarrassed that 6 their mother uses marijuana. 7 They hugged me and said: Mom, you do way 8 more embarrassing stuff than that. 9 [Laughter.] 10 SUSAN RUSINKO: I love my sons. I love my 11 parents. 12 My parents know, as do all nine of my 13 brothers and sisters. 14 My mother has said to me, she was always 15 amazed at what I was able to do having 16 multiple sclerosis. 17 And I said to her: You had no idea that 18 I was using marijuana, and that's what was helping 19 me get through. 20 Because I have used marijuana: 21 I have been able to walk through historical 22 forts; 23 I've seen Jackie Kennedy's entire collection; 24 I've been to the Hockey, Baseball, Football, 25 Hall of Fames; 1 I've canoed in 12 Great Races in my hometown 2 in Auburn; 3 I'm still able to bake those pies, and dozens 4 and dozen of cookies. 5 And I think that, now, April is my 6 14th anniversary, and I think it's high time 7 somebody figure out that marijuana does actually 8 work. 9 This disease is unpredictable, and every day 10 is a different day, and it can go from bad to worse 11 in a blink of an eye. 12 But what helps me, is knowing that so many 13 people want me to do what I have to do to live my 14 life as comfortably as possible. 15 So it's 14 years in April, and I have watched 16 my sons -- I've watch Nicholas hit home runs and 17 make touchdowns and baskets, and some of the most 18 amazing catches. 19 I watch Jacob and Jonah play gigs that had 20 the crowd eating out of their hands. 21 And I stood on the proud -- on the sidelines 22 when Noah was chosen to play the National Anthem at 23 a couple Single-A ballgames in our hometown. 24 I was there when my sons walked the stage to 25 get their high school diplomas, and I pray that I'm 1 there when they get to walk the stage for their 2 college diplomas, and for their weddings, and for 3 grandchildren. 4 So let me tell you: There doesn't need to be 5 anymore research. We've researched it to death. 6 It needs to get passed. 7 Without marijuana, I would not be sitting 8 here today, asking, begging, pleading, for this bill 9 to get passed. 10 I do risk legal ramification every single 11 day, but for me, it's something that I have to do so 12 that I can live my life. 13 Even if it is not something that each of you 14 choose for yourself, please think of your loved one, 15 and wouldn't you want them to have a good life, and 16 to be able to live their life as comfortably as 17 possible? 18 I certainly hope that this year, 2014, is the 19 year for the Compassionate Care Act to pass. 20 I'm 14 years in my disease. 21 These children don't -- I don't know that 22 they have 14 years, you know? 23 So for me, yeah, I guess I can still go 24 illegally. They can't. 25 Please do something for these children. 1 We need the Compassionate Care Act. 2 Thank you. 3 [Applause.] 4 SENATOR SAVINO: Thank you, Susan. 5 We have been joined now, also, by 6 Senator Brad Hoylman from Manhattan, and 7 Senator Joe Robach from Rochester. 8 [Applause.] 9 SENATOR SAVINO: And I believe up in the 10 audience I see back there, Senator Smith from 11 Queens. 12 You can come down and sit with us. 13 [Applause.] 14 SENATOR SAVINO: Our next speaker is 15 Donna Romano from the city of Syracuse. She also 16 suffers from MS. 17 [Applause.] 18 DONNA ROMANO: Don't applaud. I haven't said 19 anything good yet. 20 [Laughter.] 21 SENATOR SAVINO: You're here. 22 DONNA ROMANO: I'm here. It's been a rough 23 morning. 24 My name is Donna Romano, I'm from Syracuse. 25 I'm a Navy veteran of the Vietnam Era. 1 I have a seizure disorder, and, luckily, 2 I also have multiple sclerosis. Sort of like the 3 lottery. 4 My husband and I have three grown children, 5 and three very, very adorable grandchildren. 6 I've been a user of medical cannabis for 7 about five years. 8 Until that time, I was a law-abiding citizen, 9 as was expected of me, because I come from a family 10 of civil servants: 11 Three of my uncles were Syracuse policemen 12 and investigators; 13 My two nephews are firefighters: one in 14 Washington, D.C., and one in Virginia; 15 Another cousin is a firefighter in Syracuse; 16 And, my ex-brother-in-laws are also in 17 law enforcement. 18 The course of my MS has not been unusual, 19 except that it produces sensory symptoms at first, 20 and the motor deficit started to come recently. 21 I've had optic neuritis, blindness, deafness. 22 All those things were helped with IV steroids. 23 Those treatments took a toll on, you know, my bone 24 health, and just lead to a lot of different side 25 effects. 1 I've had perception and balance issues and 2 one-sided weakness that gets worse now as I, you 3 know, age. 4 My most troublesome symptom has always been 5 fatigue. 6 I would get up in the morning feeling like 7 I've been hit by a truck, and sometimes go from my 8 bed to the couch, to the bed again. 9 When all this nonsense first began, I was 10 home-schooling my three kids. 11 Doctors prescribed a pill for fatigue, which 12 turned out to be an antidepressant. Apparently, 13 there were several years of my not crying or 14 laughing while on that pill, as my family told me 15 later. 16 Then came a new pill for fatigue, a 17 controlled substance, which I'm still on once in a 18 while, and it's worked well, but it has the side 19 effect of increasing my blood pressure to high, from 20 border line. 21 There's just a thing, when you grow older, 22 there's more side effects with a lot of these 23 medications you're on. 24 Just like with the children, the side effects 25 for them are enormous for these medications that 1 they're put on. 2 So, there have been many other pills along 3 the journey. Self-injection, daily, for 10 years. 4 Just to combat the effects of one pill, 5 I would have to take another, just like Susan had 6 said. We've all heard that story. 7 So, I've also tried things: physical therapy, 8 water therapy, chiropractic, acupuncture, infrared 9 sauna, special diets, massage, biofeedback. 10 Received benefits from some. Some should be 11 covered by insurance. 12 But, still, the doctors, you know, they still 13 want you on the pills, the injections, and 14 everything. 15 Despite all the pills and all the things I've 16 tried, the symptoms continued to get worse, 17 especially my spinal pain and the spasticity of my 18 legs. 19 "Spasticity," you'll hear that word when 20 people with MS talk. 21 What that is, is like a charley horse in your 22 whole leg. And try as you might to stretch it, rub 23 it, you know, it just does not go away. And it 24 feels like your feet are sometimes in concrete 25 blocks, and that's how, you know, you're walking. 1 You see a lot of people with MS walking very 2 stiffly or widely gaited because of that. 3 And about that time that my legs started 4 getting really bad, a friend of mine -- I discovered 5 that a friend of mine was smoking medical marijuana 6 for her MS. 7 And so I decided, well, I'm going to try it, 8 and I really was amazed that I found relief. 9 I had that inner voice of mine keep saying: 10 Don't break the law. What will -- you know, what 11 will Uncle Andy say? 12 And, I just had to go with it. 13 You know, I did come out before my -- I was 14 in the newspaper, an article, in Syracuse, and I had 15 to call my elderly aunts to tell them about my 16 position ahead of time, because it's just that way 17 in my family. 18 So, anyway, I found relief. 19 My legs relaxed, they didn't jump around. 20 I could sleep. 21 And getting a night's sleep, you know what it 22 is to get a good night's sleep, you can function the 23 next day. 24 And, so, that caused me to, you know, be 25 there for my family. I'm active in the community. 1 I'm active in the MS community. 2 And now that my grandkids are not babies 3 anymore, they're toddlers, I have to be on. You 4 know, I have to be able to do things with them. 5 So, I realized that my MS flare-ups have 6 decreased significantly in the past five years. 7 I haven't had to take IV steroids since 2009. 8 I haven't seen my neurologist for over a 9 year. Our relationship has been very different 10 since the day I told her that I used medical 11 cannabis. She's very uncomfortable with my choice. 12 She doesn't want to discuss it. 13 And she has, instead of -- when I left her 14 office last, about, maybe it's 16 months, she never 15 said, Okay, make the appointment for six months. 16 I mean, I've been seeing her for 16 years. 17 And, that difference in her, and her reluctance, 18 leaves me hanging, you know, as to the condition of 19 my MS. 20 I mean, I'm sort of in a hard place now, you 21 know, where I feel better, and I think my symptoms 22 are abating when I use medication of cannabis. But, 23 I don't have that medical benefit of a provider that 24 I can talk with. 25 And that's really bothersome to me. 1 And that's one of the main reasons that I'm 2 here now, to open up that conversation with the 3 providers, and to let them feel -- you know, she 4 feels like she's going to be, I don't know, 5 sanctioned? reprimanded? I'm not sure. 6 And, so, that's why this Compassionate Care 7 Act also needs to be passed, so that we can have 8 those conversations, and I can have that support by 9 a medical provider again. 10 SENATOR SAVINO: Are there any -- any of your 11 other physicians, are they supportive of your 12 choice, without sanctioning it? 13 DONNA ROMANO: My acupuncturist, she's also 14 an anesthesiologist, she's okay with it. You know, 15 she still considers it a drug, which, you know, it 16 is, it's a medication. 17 But there really -- no, I don't. I don't 18 have -- they all sort of, Oh, we're not going to 19 talk about that. Don't tell me what... 20 You know? 21 I do have some of my treatment at the 22 VA hospital, because I have a disability. And, 23 often, they will ask me to urinate in a cup, to see 24 if I'm on anything. 25 I mean, they would prescribe me for my spine 1 pain. They would prescribe me oxycodone in a 2 minute, you know? 3 But, something like this, you know, they're 4 not willing to speak about. 5 So I just urge the Senators that are dragging 6 their feet, trying to make a decision, to consider 7 this, too: You know, that the doctors need to have 8 the freedom to speak to us, and provide for us in 9 the way that they should. 10 And I hope that they -- especially 11 Senator DeFrancisco, if you're listening -- would 12 vote yes for Compassionate Care Act, this session. 13 SENATOR SAVINO: Thank you, Donna. 14 I think Senator Robach has a question. 15 SENATOR ROBACH: I really don't have a 16 question. 17 I thank you, Donna, for sharing your story. 18 And I've heard Susan's when we had the little 19 roundtable with Senator Maziarz. 20 And I do think it's important to note that, 21 because I think this is so relevant, that this model 22 of the bill we're trying to promote is a medical 23 one, and under doctor supervision. 24 And there are many doctors that do adhere to 25 this, and are joining that, and are helping, you 1 know, move this. And have actually told patients, 2 which is, to me, the tough part. 3 You made the point so much, that in the vast 4 realm of pharmaceuticals that we already use, while 5 they have some good things, they have some bad side 6 effects. 7 And many physicians are saying: Let's at 8 least try this for complex cases, whether it's young 9 people with seizures, elderly people with, you know, 10 long-term debilitating diseases. 11 I think we can do what, you know, 19 other 12 states do, which aren't the ones that are getting 13 all the publicity, and have that on that medical 14 limited scale, to help you. 15 So, I just wanted to say, it's important to 16 know that all doctors aren't in that category. 17 DONNA ROMANO: I know. 18 I went to a program last week, about a new 19 oral medication for MS. And at the end of -- the 20 doctor was from Strong Memorial in Rochester. 21 SENATOR ROBACH: I've heard about it before. 22 DONNA ROMANO: Yeah, you have. 23 And so after his talk, and the patient 24 advocate that was there, speaking about that new 25 oral medication, which is a big deal in the 1 MS society -- MS group, because most of them have 2 been injectables, until recently, I asked the doctor 3 and the advocate what their position was on medical 4 marijuana. 5 And the doctor said, that he said: I'm all 6 for it. I think it should be legalized. 7 He said: I've seen a lot of patients respond 8 very well. 9 And I really thought to myself, if I lived in 10 Rochester, he would be my neurologist. 11 SENATOR ROBACH: Yeah, and I think I know who 12 you're speaking of. 13 So, many physicians have come out, pretty 14 cogent reasons, of, you know, why they support it, 15 too. 16 But, you know, in today's day and age, we've 17 gone to the model, where -- and we've had great 18 success, by trying to use experiment, spend a lot of 19 money on research, to find out what works. 20 And I hope we will do it, because we should 21 be responsible and include what's working for you. 22 DONNA ROMANO: And for the first time, 23 I think I can say that I deserve it. 24 [Applause.] 25 SENATOR SAVINO: Thank you, Donna. 1 This is a bicameral roundtable. We have a 2 member of the Assembly, Matthew Titone, is here on 3 the dais. 4 And up in the back, sitting back there, is 5 Assemblyman Mike Cusick; and I mention for a reason, 6 not just because he's from Staten Island. 7 But, Mike Cusick is the sponsor of the I-STOP 8 bill in the New York State Assembly, along with 9 Senator Andrew Lanza, who will probably be here 10 later, dealing with the prescription-drug problem 11 that we now have. 12 Many of you know that your doctors are 13 prescribing highly addictive, dangerous drugs; 14 that's your only choice. And that has spiraled out 15 of control, creating another problem in 16 New York State. 17 So we need I-STOP, and we Compassionate Care. 18 We're going to shift gears a bit now, to go 19 to industry professionals from other states. 20 One of the many questions we get about this 21 bill is: It's no longer if; it's when. And when it 22 does happen, what could it look like, what would it 23 look like, what should it look like? 24 So we're going to have, now, a speaker from 25 Gaia, which is a medical-marijuana producer in 1 Colorado. 2 I had the privilege of going to visit them 3 about a year and a half ago, to see what a 4 medical-marijuana facility could look like, what a 5 dispensary could operate like. 6 And, Meg Sanders, who is the CEO of 7 Gaia Plant-Based Medicine, is going to come down and 8 address us now. 9 [Applause.] 10 SENATOR SAVINO: Welcome, Meg. 11 MEG SANDERS: Thank you. 12 SENATOR SAVINO: Nice to see you again, and, 13 Charlie. Charlie's going to -- well -- 14 MEG SANDERS: Yes, Charles is joining us. 15 Good morning, Senator Savino, members, and 16 ladies and gentlemen of the audience. 17 My name is -- 18 SENATOR SAVINO: Meg, pull the mic a little 19 bit to you. 20 MEG SANDERS: Oh, sure. 21 SENATOR ROBACH: You can tip that up, too, if 22 you want to. 23 SENATOR SAVINO: There you go. 24 MEG SANDERS: My name is Meg Sanders, and I'm 25 the CEO of Gaia Plant-Based Medicine in Colorado. 1 We currently are fully compliant with 2 16 state and local medical-marijuana licenses in 3 four jurisdictions. 4 I'm also a mother of two, a formal 5 financial-compliance manager, and an active 6 volunteer in my community. 7 I was also the only industry representative 8 on Colorado Governor Hickenlooper's Amendment 64 9 Task Force for implementations of rules and 10 regulations for legalizing marijuana. 11 I am joined by Charles Feldmann, our 12 corporate council. 13 I welcome and appreciate this opportunity to 14 address the roundtable on behalf of Gaia, and to 15 give the perspective of a fully operational and 16 successful medical-marijuana company. 17 We've been in operation since 2010, and have 18 seen and experienced the evolution of Colorado's 19 medical-marijuana program. 20 Our company has also been working around the 21 country for the past three years on marijuana-reform 22 legislation at the local, state, and national level. 23 We have the benefit of seeing many models in 24 action, and are confident that the New York's 25 legislation will yield the best law in the nation, 1 as the best model to fit within the guidelines of 2 the August 29, 2013, Department of Justice 3 memorandum. 4 To that end, the most important parts of the 5 proposed New York law are seed-to-sale tracking, 6 limited licensing, legitimate medical need, strong 7 criminal and financial background checks on industry 8 owners and employees, and partnerships with all 9 government jurisdictions. 10 Seed-to-sell tracking is an essential tenet 11 that tracks a plant from its viability, directly to 12 being purchased by patients, using technologies such 13 as RFID, and through internal and enforcement 14 audits. 15 All medicines should be tracked back to its 16 original plant regardless of where it is in the 17 supply chain. This is a key element to preventing 18 diversion. 19 Limited licensing goes hand in hand with 20 tracking, because it is about enforcement, and the 21 ability for the state and local jurisdictions to 22 adequately and efficiently regulate and enforce the 23 laws. 24 A manageable number of registered 25 organizations is necessary and fosters cooperation 1 between regulators and businesses. 2 We have seen in states where there are 3 hundreds, or even thousands, of licensees, that 4 effective enforcement and regulation is difficult or 5 virtually nonexistent with the allotted resources. 6 Legitimate medical need or involving a doctor 7 who has a relationship with the patient is 8 imperative to ensure the integrity of the program, 9 and keeps medical decisions where they should be: 10 between doctor and the patient. 11 Strong criminal and financial background 12 checks assure the public, the state, and the federal 13 government that the participants in the industry are 14 respected and responsible business owners. 15 Having business persons involved as partners 16 in growing this industry means putting the patients 17 first, and not just legalizing people who are 18 currently conducting an illegal business. 19 Having the actual proven ability to grow 20 medical-grade marijuana is also extremely important, 21 as -- so much so, that it should be part of the 22 bill. 23 A medical-marijuana program without 24 medical-grade product for patients is a failure. 25 One thing this legislation does not fully 1 address is the importance of patients having access 2 to a variety of delivery methods and products to 3 suit their individual medical needs and personal 4 preferences. 5 While smoking or vaporizing marijuana remains 6 the most common choice by patients, and is 7 considered the quickest and, often, most-effective 8 delivery method, many patients will use a variety of 9 delivery methods, such as oils, tinctures, lozenges, 10 for example. 11 Which is why I'm here to strongly encourage 12 you to specifically allow for infused products 13 within the New York medical-marijuana program, in 14 addition to the more common and preferred combustion 15 or vaporizing of the dried product. 16 Infused products have been a staple for many 17 patients in medical-marijuana states throughout the 18 country, which we have seen firsthand. 19 Many who use our infused products do so at 20 night before bed, allowing them to sleep soundly 21 throughout the night without experiencing any 22 psychoactive effects. 23 They are also a preferred alternative for 24 those who choose not to smoke or vaporize the 25 product, or who do not need the immediate relief 1 that only comes from combustion or vaporizing of 2 dried marijuana flowers. 3 With regards to smoking or vaporizing the 4 dried marijuana flowers, this remains the most 5 common delivery method, and is important to not fall 6 into the trap of thinking of medical marijuana in 7 the same vein as cigarettes. 8 Commenting on the findings of 9 Donald P. Tashkin, M.D., emeritus professor of 10 medicine, and medical director of the 11 Pulmonary Function Laboratory at the David Geffen's 12 School of Medicine at UCLA, and the 30-year 13 U.S. government-sponsored study, McGill University's 14 Dr. Mark Ware concludes: 15 "Cannabis smoking is not equivalent to 16 tobacco smoking in terms of respiratory risk. 17 Cannabis smoking does not seem to increase risk of 18 Chronic Obstructive Pulmonary Disease (COPD), or 19 airway cancers. In fact, there is even a suggestion 20 that at low dose, cannabis -- at low doses, cannabis 21 may be protective for both conditions." 22 Ultimately, it is up to the patient and their 23 doctor to decide the best method of delivery, and 24 make medical decisions accordingly. 25 At this time, I would like to turn it over to 1 Attorney Feldmann, and I thank you again for your 2 efforts on this important piece of legislation, and 3 I look forward to answering any questions you may 4 have. 5 SENATOR SAVINO: Thank you, Meg. 6 [Applause.] 7 SENATOR SAVINO: Charles Feldmann is the 8 corporate counsel for Gaia, and he's going to 9 address some of the issues about security, and how 10 you set up an operation. 11 You don't have a prepared statement, though, 12 right, Charles? 13 CHARLES FELDMANN, ESQ.: No, I don't. 14 So I had more -- instead of sitting, hearing 15 a speech from yet another attorney, I'd love to 16 answer any questions about Colorado's model. 17 My background, I was a federal prosecutor, 18 and defense counsel, with the Marine Corps. 19 I was also a DEA drug-state task force 20 commander, and prosecutor, in Colorado. 21 So I come from a very strong law-enforcement 22 background. 23 Have worked actively with our local 24 law enforcement to implement a very robust 25 law-enforcement model in Colorado. 1 And, would love to share any of those 2 insights or backgrounds that would be helpful. 3 SENATOR SAVINO: Senator Robach -- well, 4 first, we've been joined by 5 Senator Ruth Hassell-Thompson from the Bronx and 6 Westchester. 7 [Applause.] 8 SENATOR ROBACH: I was just curious, Charles: 9 So -- just -- this is my perception. 10 So, you only hear about California and 11 Colorado all the time. That's all I see in the 12 media, but I believe there's, like, 19 or 20 other 13 states -- 14 Correct? 15 CHARLES FELDMANN, ESQ.: Correct. 16 SENATOR ROBACH: -- that have this, and it 17 seems to be very well controlled, very well 18 enforced, very medical in nature. 19 And I think that's important for the record. 20 Is that pretty accurate? 21 CHARLES FELDMANN, ESQ.: I think the two 22 states you just mentioned show the dichotomy in the 23 industry between an unregulated state, California; 24 and a very, probably top of the pile right now, 25 law-enforcement-regulated state of Colorado. 1 Your bill, I think, will be the most-cutting 2 edge, if that passes, because it creates more 3 regulation and more control, which is, again, what 4 the federal government is looking for for states 5 passing medical-marijuana programs. 6 SENATOR ROBACH: I've had others just 7 suggest, anecdotally, that Connecticut has a very 8 good application of this that's worked, virtually, 9 seamless, with no controversy whatsoever. 10 Do you think our bill would be even above and 11 beyond that, as this? 12 CHARLES FELDMANN, ESQ.: It will be. 13 Connecticut -- once Connecticut is actually 14 implemented and rolling out, I would agree with you, 15 will be that robust enforcement action that they're 16 looking for. 17 Yours is very similar to that. 18 And, again, the distinction from Colorado 19 that is better, according to the federal government, 20 what they want to see, I think is that limited 21 licensing, that allows your regulators to really 22 keep a tight lid and control over who's producing, 23 where it's going, how you're tracking it, how that 24 medicine is getting from the grower to the actual 25 patient. 1 The federal government has told us they're 2 very concerned about diversion; diversion to other 3 states, to cartels, organized crime. 4 And that limited licensing scheme, that 5 seed-to-sale scheme, really helps your regulators 6 enforce that. 7 SENATOR ROBACH: Thank you. 8 SENATOR SAVINO: Any -- just a few questions 9 for you, Charles. 10 And I think your experience, not just in 11 Colorado, but as a former federal prosecutor and a 12 DEA agent, is critically important in helping us 13 create a program that will survive the scrutiny of 14 the federal government. 15 As you are aware, earlier this year, the 16 Governor issued an executive order, that he feels 17 that the State should move forward without 18 legislation; we should move faster, not slower. And 19 he resurrected a piece of legislation that was 20 passed in the 1980s, that we recognize as 21 unworkable. 22 But one of the things that it provided for, 23 was that we would obtain medical marijuana from 24 other states, so that it could be distributed 25 through 20 hospitals in New York State. 1 Could you speak to what's wrong with that 2 proposal, and why the federal government would not 3 allow that? 4 CHARLES FELDMANN, ESQ.: One of the major 5 points of law enforcement, on the federal side, and 6 a lot of what I do is analyze that evolving federal 7 position when it comes around medical marijuana, is 8 you cannot have interstate trafficking. 9 So you can't -- and you look at the Colorado 10 model, you can't come to Colorado and purchase 11 medical marijuana, and then take it home with you. 12 It's got to stay within that state. 13 So until something drastically changes on the 14 federal level, that model just will not work. 15 You'll fly in direct contravention of what the 16 Executive Branch has told us that they're going to 17 allow to happen. 18 SENATOR SAVINO: In addition, I believe one 19 of the proposals was that, for hospitals in 20 New York State to distribute marijuana that was 21 seized in drug raids. 22 Meg, as a producer of medical-grade 23 marijuana, do you believe that that is something 24 that patients should be exposed to? 25 MEG SANDERS: Not at all. 1 Our product is tested at multiple levels. We 2 use the highest quality control in producing a very 3 professional grade, medical-grade product. 4 I can tell you that drug dealers that are 5 growing this on the street don't necessarily offer 6 or exercise that same control. 7 And that would be my concern, is: What's in 8 that product? What pesticides might have been used, 9 which would be a huge concern to me, to deliver that 10 to anyone with a compromised immune system or any 11 type of diseased state. 12 SENATOR SAVINO: Senator Hoylman. 13 SENATOR HOYLMAN: Thank you. 14 Thank you for being here. 15 And thank you, Senator Savino, for organizing 16 this, and for your advocacy on this bill. 17 I wanted to ask about the specifics regarding 18 medical-grade marijuana. 19 Who actually regulates that, or does anyone 20 at this point, in Colorado, in terms of quality 21 control? 22 MEG SANDERS: Right now, the regulation is -- 23 we're still working on that. 24 It's up to me, as a business owner, to test 25 my product. And it's up to me to vet who I'm 1 testing my product with. 2 And that is, right now -- we're seeing -- 3 we're seeing that change. 4 Connecticut has a strong testing method, or 5 testing methodology, in their bill. 6 And I would encourage New York to look at 7 that, as well. You know, making sure that any 8 testing laboratory is sanctioned by the State, and 9 is being certified by the State, as far as their 10 testing methodology. 11 One of the largest pieces that's missing in 12 Colorado right now is a standardized test sample 13 that everyone's calibrating their machine with. 14 And that just doesn't exist. 15 SENATOR HOYLMAN: And do you foresee the 16 federal government stepping in at some point, the 17 FDA, in terms of monitoring quality? 18 MEG SANDERS: Well, I would say, as far as 19 the actual dried product, this is more of a 20 plant-based medicine, instead of a 21 pharmaceutical-based which would fall more under 22 FDA. 23 Plant-based medicine, right now, falls more 24 under supplement guidelines, and I would say that 25 that's more accurate. 1 As long as we're clear on our labeling about 2 what this does and does not do, and how it's been 3 tested, and the research that's been done in order 4 to say this is specifically for that, we can't do 5 that. We would have to be very clear about 6 statements on our labeling. 7 SENATOR HOYLMAN: Thank you. 8 SENATOR GRISANTI: Just a quick question: 9 The -- can you explain a little bit, so this way 10 it's clear to those that are trying to get educated 11 on this, that the plant itself, the genetic splicing 12 of the CBD chemical that's used in the oil to treat 13 other -- the seizures, the individuals from my 14 district that are actually coming down to Colorado 15 to get residency? 16 Can you expand on that a little bit, and what 17 the level of THC is on that side of the oils? 18 MEG SANDERS: Well, I think what's important 19 to realize, is that there are multiple aspects of 20 this plant that treat all types of ailments. 21 And, yes, there are some specific anecdotal 22 data that we're seeing in Colorado with regards to 23 high CBD, low THC, strains, but, there are multiple 24 ways that this plant helps people. 25 And as you've heard testimony, as far as the 1 different pharmaceutical-grade products that were 2 given to patients prior to their access to medical 3 cannabis, are far more dangerous opiates and other 4 types of drugs that I would say, when you look at 5 cannabis as an alternative, it's a much, much better 6 alternative. 7 It is important that we look at all the 8 aspects, and make sure that we are providing high 9 CBD strains and high THC strains. 10 There's many aspects of this plant that are 11 important, and we want -- we don't want to get lost 12 into picking the plan apart. There's lots of ways 13 that the plant helps many types of ailments. 14 SENATOR GRISANTI: And with the -- it's 15 important what you said, because -- and what 16 Senator Savino said, because you do not want to have 17 the type of marijuana that has been confiscated 18 through DEA agents in one state and brought over 19 here, because you don't know what's in it. 20 MEG SANDERS: That's correct. And there's no 21 way to -- you know, if you're just somebody picking 22 up various flowers from -- that have been seized in 23 a drug raid, to know what those strains are. 24 The way we grow, we know what our strains 25 are. We test every single plant, every single 1 batch, as far as what that specific strain has in 2 its component makeup, as far as THC, CBD, and many 3 other factors of the plant that are very important. 4 So that would be almost an impossible thing 5 to do. You would, basically, have to test every 6 single flower before you could give it to the 7 patient. 8 That's not very realistic. 9 SENATOR GRISANTI: Okay. Thank you. 10 CHARLES FELDMANN, ESQ.: And I would add to 11 that, looking at their organization, I mean, this is 12 a white-lab-coat laboratory-type facility, where 13 this is grown, versus coming from DEA. 14 I mean, we often seized cannabis in meth 15 labs, so I can't even imagine what that has been 16 subjected to or been around, that you're going to 17 treat a patient with. 18 SENATOR SAVINO: Charles, can -- I want to go 19 back to a -- more of the security issue, because a 20 lot of the questions that have come up from members 21 over the course of this legislative process, is, you 22 know: 23 How do you prevent diversion? 24 How do you create a secure facility? 25 What does a medical marijuana grow-house look 1 like? 2 And how do we track the plant: the 3 seed-to-sale? 4 And can you describe what goes into, you 5 know, running one, securing it, and making sure that 6 that product stays in the streamline that we want it 7 to? 8 CHARLES FELDMANN, ESQ.: First, it takes a 9 lot of financial resources. 10 So, they have built a warehouse fortress. 11 We use special-forces security companies so 12 that you cannot actually get into that. Every 13 aspect to that warehouse has a camera on it. And 14 I mean, "every aspect." 15 It is more regulated than the alcohol or 16 gaming industry. 17 Our regulators have direct access to all of 18 that video. 19 All employees, all investors, all owners, 20 anyone with a financial component to the industry, 21 has a financial, a criminal history, and a 22 moral-character background check on that. 23 So that's just the beginning of limiting 24 who's going to participate in this industry, so that 25 you end up with a medical-grade. 1 From there, there's transportation manifests 2 that the regulators get every time you're going to 3 move medical marijuana from the grow to an actual 4 dispensary. It's weighed, it's measured, at 5 numerous points. 6 And then every plant, from the beginning 7 until the very end, has an electronic signature 8 attached to it. 9 That, Meg can walk into her warehouse, or a 10 State regulator can walk in unannounced, and with 11 the push of a button, code every plant in that 12 warehouse: where it's going, where it's been. 13 And that's been revolutionary. 14 That is the exact opposite of what California 15 has, which is why California has so much federal 16 involvement, and other states don't. 17 SENATOR SAVINO: And can you -- sorry. 18 Can you -- describe the dispensary, because 19 that's one of the questions I've gotten from many 20 people: We don't want people being able to walk in 21 off the street like it's a candy store. 22 So if you -- I've been to Colorado, I've been 23 to Jersey. I've seen somewhat of a difference 24 there. 25 But if you could describe for the members 1 what a dispensary looks like, and how you control 2 what goes on in the dispensary? 3 MEG SANDERS: Yes. 4 So our dispensaries have controlled-access 5 points. 6 So what that means is, prior to even being 7 into the area where there's medicine available, your 8 "red" card is -- your "red" card, which is your 9 patient card in Colorado -- is verified, along with 10 the picture ID, every single time you come in. 11 It's not, Hey, I know you now, come on in. 12 That's not how it works. 13 And then, once you're verified by our 14 front-office staff, then you're buzzed in to the 15 actual dispensing location. 16 At that point, our people behind the counter, 17 our consultants, would then bring your profile up 18 and ask you specific questions about, you know: 19 Do you have any concerns about medicine that 20 you received in the past? Or any question as far 21 as, how -- the effects that you had? 22 And then they would dispense prepackaged 23 medicine to you, that then is -- and that medicine 24 is in child-proof containers. It's then put in a 25 sealed bag, with your receipt, and then you're 1 off -- off you go outside to -- of the dispensary. 2 And all of this is done on camera, again, 3 which is kept -- this is one thing that we have to 4 do in Colorado, we keep all of our video for 40 days 5 so it can be reviewed at any time. 6 And that's part of our internal process, as 7 well as the state regulations. 8 SENATOR SAVINO: Yeah, that is pretty good. 9 Oh, one final question: As you know, 10 Colorado has made a lot of news on the marijuana 11 policy, yes, because of the change in the legality 12 of recreational use. 13 But, you know, people who are opposed to 14 marijuana use, whether it's recreational or medical, 15 often cite that if we allow people access to 16 marijuana, we're going to see an increase in DUIs 17 and DWIs. 18 Has that manifested itself in Colorado? 19 CHARLES FELDMANN, ESQ.: You know, I would 20 say the opposite of that. 21 It's funny that we just have that question, 22 because I was speaking to one of our local sheriffs, 23 a staunch Republican. He and I were both part of 24 the failed War On Drugs, as drug task-force 25 commanders. 1 And he just commented, he was like, "I wish 2 I had evidence to support, you know, my initial 3 position against medical marijuana." But he says, 4 "I've got something. I've seen no increase in any 5 sort of criminal activity." 6 Whether it's juvenile diversion, whether it's 7 DUIDs, we just have not seen any of that growth. 8 And, again, would I attribute that, not to 9 just luck, but a very strict regulatory model. We 10 really control it. 11 Our regulators would tell you it's more 12 controlled than the gaming industry, which, as 13 everyone knows, is as strict as it gets. 14 SENATOR SAVINO: Thank you. 15 Assemblyman Titone. 16 ASSEMBLYMAN TITONE: Thank you, Diane. 17 You had mentioned going to the dispensaries, 18 that the patient is asked several questions. 19 Is that mandated, those questions, that 20 dialogue? 21 MEG SANDERS: No, it's not mandated at all. 22 It's just part of our customer-service experience. 23 We want to make sure that if a patient has 24 any questions about any of our products, that they 25 get as much information as possible. 1 And then, that way, they're also able to 2 interact directly with their doctor, as far as any 3 specific questions they have on strain availability 4 or delivery methodology; and, so, you know: 5 Should I use a tincture? 6 Should I use a lozenge? 7 Should I vaporize the product, or should 8 I use an oil? 9 Those are many aspects of each product line 10 that you want to explain. 11 ASSEMBLYMAN TITONE: It's impressive to me, 12 because I think about me just going to, you know, my 13 drugstore, you know, a big-box store, and the 14 question I get is, you know, "What's your 15 insurance?" And there's no dialogue. 16 So I was just wondering about that, whether 17 it's mandated or not. And it seems to be an 18 important dialogue that -- whether pharmacists or a 19 dispensary should have with a patient. 20 MEG SANDERS: I think patient education is a 21 critical element of any successful medical-marijuana 22 program. 23 And because there isn't this vast amount of 24 documented research that we can all point to, it's 25 really the dialogues that are creating the 1 awareness, and that needs to continue. 2 You've heard testimony today. 3 It's critical that we hear from the patients 4 how this medicine is helping them. 5 ASSEMBLYMAN TITONE: Thank you. 6 SENATOR SAVINO: Senator Hassell-Thompson. 7 SENATOR HASSELL-THOMPSON: Forgive me if my 8 question is a little off from where you've been 9 discussing, but, I'm going to be holding a series of 10 town meetings, because there is a concern among the 11 religious community, and some leaders, that 12 marijuana poses a dangerous threat in many 13 communities, because they believe it's a gateway to 14 other drug use. 15 What I've tried to -- what I've tried to 16 impart is that the focus should not be on 17 medical-marijuana use, but recreational. 18 But how do I combat that as an issue? 19 I mean, even in my -- even in my office 20 yesterday, discussing the planning of this, there is 21 disparity in thinking about whether or not this is 22 true or not true. 23 And I guess I'm asking, because I don't get 24 the opportunity to sit before somebody who's had the 25 kind of experience that you have, that might be able 1 to help us with that aspect as well. 2 CHARLES FELDMANN, ESQ.: That's a great 3 question, a great issue. 4 I think the real issue, when you talk about, 5 from a War-On-Drug perspective, and gateway-drug 6 labeling, it's substance abuse by youth. 7 And everyone agrees, from top to bottom, that 8 that's an issue that has to be addressed 9 continually. 10 To single out medical marijuana as the 11 gateway drug to substance abuse by youth, I just 12 think is unsupported by the facts, it's unsupported 13 by the culture -- the law-enforcement culture that 14 I was a part of. 15 So I think when you really educate people to 16 what's happening, and what is not happening, you win 17 that argument. 18 And, medical marijuana that we've seen in 19 very controlled regulatory models, where you're not 20 allowed to have diversion. 21 And, again, it's similar to how we regulate 22 the alcohol industry. 23 We do ID checks. We actually care about 24 keeping alcohol out of underaged drinkers. 25 And it will be the same philosophy and the 1 same routine that you'll have to implement with 2 medical marijuana. 3 So it's a very the analogy is very close to 4 how we regulate the alcohol industry. 5 But what I've seen, coming from enforcement 6 perspective, it is just inaccurate to single out 7 medical marijuana as this devil of a gateway drug to 8 youth. 9 It just turns out not to be that. 10 MEG SANDERS: May I add one thing do that? 11 SENATOR HASSELL-THOMPSON: Sure, please. 12 MEG SANDERS: One thing in Colorado that 13 we've seen, obviously, marijuana is on the front 14 page every single day. 15 The "Denver Post" now has an actual marijuana 16 editor, that, just about every single day, you'll 17 find an article related to the industry, or to the 18 medicine, or to recreational, or -- I mean, you name 19 it. 20 The point being, is that it's a topic of 21 conversation at dinner tables every day. 22 This -- the discussion point, the education, 23 is a key element to awareness, and to preventing 24 teenager or underage use of any type of controlled 25 substance, whether it be prescription drugs or 1 medical marijuana or drugs from the street. 2 That is one thing I can say. 3 It's just amazing to me the conversations 4 that are happening, and I think that's a very 5 important point to realize, is that, as an industry, 6 as a state, Colorado has done a very good job about 7 educating its residents about this drug, as well as 8 many other things. 9 SENATOR SAVINO: Assemblyman. 10 ASSEMBLYMAN TITONE: Just an observation: 11 I'm not aware of any studies whatsoever that 12 prove the theory of gateway drugs. 13 In fact, if we were to talk about gateway 14 drugs, one over the other, my point has been, and 15 I maintain it, until otherwise proven incorrect by 16 science, is that if you're going to take the whole 17 theory of gateway drugs, you need to start, first, 18 with the kid rolling down a hill to get dizzy, and 19 then you can say that that's a gateway drug. 20 So I don't buy into the gateway-drug argument 21 or debate. 22 Thank you. 23 SENATOR SAVINO: And even if it were a 24 gateway drug, then the question is: What's it a 25 gateway to? The legal, highly addictive, dangerous 1 narcotics that you can get from your doctor. 2 But, do we have any other questions for Meg 3 and Charles? 4 No? Great. 5 Thank you very much. 6 [Applause.] 7 MEG SANDERS: Thank you. 8 SENATOR SAVINO: We are going to now hear 9 from -- because I heard a couple of times, questions 10 about: How do you package it? How do you keep it 11 child-proof? 12 We're going to hear from Dean Petkanis, who's 13 the founder, chairman & CEO, of KannaLife. He's 14 going to talk about the business of -- science of 15 packaging, and labeling, how detailed it should be, 16 and how we can make sure we don't divert it. 17 Session? 18 Oh, we're competing with the session right 19 now, so people will come and go. 20 DEAN PETKANIS: Good morning, Senator Savino, 21 members of the Senate and Assembly. 22 I want to thank you, and the family members 23 here, and the patients in this room, and the 24 children, for allowing us this opportunity to speak 25 before the Panel. 1 By way of background, I am the chairman, 2 chief executive officer, of KannaLife Sciences. 3 My co-founder and partner, Thomas Kikis, is 4 sitting here to my right. 5 And, we are the only company in the 6 United States within the industry that has a license 7 with National Institutes of Health, Office of 8 Technology Transfer, for the 507 Patent, which are, 9 cannabinoids is antioxidants and neuroprotectants. 10 We do have several facets of our business, 11 including drug development and discovery underneath 12 that patent, and the standardization practice, 13 quality-control and assurance in packaging of 14 medical marijuana. 15 My background in the industry goes as far 16 back as 1992, excuse me, where I was involved in the 17 finance of a company that developed paclitaxel. 18 That's a generic drug for the treatment of cancer, 19 and that came from the bark of the Pacific yew tree. 20 So here we have the instance where a plant, 21 that is a medicinally-purposeful plant, can be used 22 for compassionate care and treatment of a variety of 23 different disorders and maladies. 24 It's probably the most potent 25 pharmacologically active plant known in pharmacopeia 1 that has not been released for medical use, and has 2 been federally restrained by the 3 Controlled Substances Act. 4 So I applaud you for your efforts, and the 5 State's efforts, in bringing forth a medium in which 6 the product can be used for medical purpose. 7 We started this company 4 1/2 years ago, with 8 the scientific approach of standardization and 9 quality control and assurance of packaging. 10 And part of that was to bring forth what the 11 chemical substances are within the plant -- thank 12 you -- and to also build a monograph that would help 13 doctors look at the plant and the chemical 14 substrates and ratios to which the chemistry 15 operates within the plant, and allay it across a 16 pantheon of disease indications. 17 And everybody here may know that there have 18 been a variety of different diseases that have been 19 targeted for use of -- medicinal cannabis is used 20 for, you know, including migraines, irritable bowel, 21 MS, intractable pain from chemotherapy and cancer 22 treatment, nausea, wasting, appetite suppression, 23 appetite improvement. 24 How does a doctor and a clinician understand 25 what the methodologies and prescription methods 1 should be used for in regards to prescribing medical 2 marijuana? 3 So we've developed a database, as well as a 4 packaging solution, for the industry, so that 5 participants, such as Gaia, which stands head and 6 shoulders above others in the state of Colorado. 7 We also have formulary operations in Colorado 8 and in Vancouver. 9 So, we've identified some of the market 10 participants, and their ways, means, and methods on 11 how they approach their standards and practices, 12 because it's very much what Meg Sanders had said, in 13 terms of practice. 14 The FDA will look at botanical medicaments as 15 nutraceuticals and supplements. And they look at it 16 on label, and on panel, for Code of Federal 17 Regulations, Title 21: 18 What are you putting on that package? 19 What does a patient know they're consuming? 20 How does a doctor know what the patient is 21 consuming? 22 And much of that, I think, should come 23 together in the form of traditional health-care 24 models and Western-medicine medicinal practices. 25 And if you bring the two together in 1 standards and practices, then you'll have, I think, 2 a robust market for the methods and means of 3 treatment using medicinal-cannabis [unintelligible]. 4 We do have a sample of what we would call an 5 "early package solution" that was used by a market 6 participant in Colorado, a grower and dispenser. 7 On the front and the back are all of the 8 labeling requirements by the State, as well as a 9 body chart, to help doctors identify the hot spots 10 on the body, and the potency of the plant, so that a 11 doctor can actually get clinically involved, as 12 opposed to, just giving a patient a card to go and 13 into a dispensary, and have somebody in the 14 dispensary stick their hand in a jar, pull out some 15 bud or flower, put it in a bag and give it to a 16 patient. 17 So, 4 1/2 years ago we identified the needs 18 of a marketplace, and felt that we could much be a 19 participant in helping standards and practices, 20 certifying growers, certifying dispensaries, 21 certifying producers, in their goals towards 22 bringing medicine to the market. 23 And much of what you would find on that 24 package would be cataloged in a database -- in a 25 HIPAA-compliant database that doctors could go to, 1 and also use a soft clinical diary with their 2 patients on followup. 3 This will also help bring more knowledge and 4 experience to the marketplace in traditional 5 health-care models of treatment. 6 So, as a New York-based company, we're proud 7 to say that we're the only of our kind in the 8 country, with a license, but also with the 9 opportunity to help the State bring forth 10 adjustments, going forward, in compassionate care 11 and controls and methodologies that more align 12 themselves with the Western philosophical practice 13 of medicine, and also the FDA's "Guidance on 14 Botanicals" which was written in 2004. 15 In closing, I would pass on to Tom Kikas, if 16 he has any thoughts on the matter. 17 But as I look around the room, and I know 18 some of you here, you know, I have a real strong 19 burden for children. They rely so much on us and 20 our abilities to be sensible in helping them deal 21 with their maladies and disorders. 22 They didn't ask for this. 23 And my faith reminds me, in Matthew 19:14 and 24 Matthew 18:6, where the Great Physician talked about 25 children, and our responsibility in making sure that 1 they get what they need without any hinderance. 2 [Applause.] 3 SENATOR SAVINO: Thank you. 4 You're going to testify, too, or you're just 5 going to answer questions? 6 THOMAS KIKIS: No, I'm just going to answer 7 questions, I think. 8 SENATOR SAVINO: Okay. 9 First of all, thank you for that. 10 This -- I'm not sure if everybody can see 11 this, but one of the many concerns that have been 12 raised, and I think part of what is driving the 13 concern from people who have talked to you, is about 14 potential diversion, because I think there's a 15 misconception about what could happen with a 16 medical-marijuana dispensary, that you could go in, 17 I guess, buy it and have it in a paper bag, and then 18 it disappears. 19 So, I think it's very important that people 20 see these, this packaging that you use in your 21 dispensary, because it labels: The name of the 22 dispensary. The date it was packaged. The date it 23 expires. There's a bar code. 24 So -- and in addition, it's sealed. 25 Now, if I'm a patient in a state that has 1 medical marijuana, and I'm approved to use it, I'm 2 registered with the State, I have my "red" card, and 3 I need it for my particular condition, I'm only 4 going to get so much at a time; right? 5 DEAN PETKANIS: That's correct. 6 SENATOR SAVINO: And if I were, you know, 7 I guess, irresponsible enough to give it away, that 8 would have a problem -- I would have a problem then, 9 obtaining the medication that I need for my 10 condition? 11 DEAN PETKANIS: That's correct. 12 SENATOR SAVINO: And one of the ways we 13 control that is through these very strict packaging. 14 DEAN PETKANIS: That's correct, yes. 15 SENATOR SAVINO: You also have a patent, 16 don't you, from the National Institute for Health, 17 on how medical marijuana can treat traumatic brain 18 injuries. Is that true? 19 DEAN PETKANIS: Yes. 20 We're in two areas of encephalopathy right 21 now: One is on an exclusive basis. The other is 22 being driven right now on a nonexclusive basis. 23 We chose the disease pathology underneath the 24 patent that spoke to oxidated stress in the brain as 25 a result, ironically, to alcohol consumption and 1 ethanol toxicity. 2 Patients that have cirrhosis will develop 3 ammonia and ethanol toxicity in the brain. And it 4 has been scientifically, I would say, suggested in 5 an intramural research study at NIH, which is the 6 subject of the patent, that cannabinoids are 7 reasonably decent antioxidative stress relievers and 8 neuroprotectants. 9 So, we looked at the neuroprotectant side, 10 and glad to say that, in our preclinical studies, so 11 far, we've indeed assessed that we have some very 12 exciting drug discovery work on the way that 13 protects the brain. 14 Now we're moving into trauma, traumatic 15 injury, which is also a big subject now for families 16 that have children that play full-contact sports. 17 Concussive injuries is a serious issue now. 18 So the patent from -- oddly enough, the 19 United States government is the holder of this 20 patent, and we're a technology partner, with 21 National Institutes of Health have stepped up as a 22 commercially viable company to produce a drug 23 underneath that patent for patient use. 24 So, we chose those diseases. 25 It just shows the diversity of the means 1 cannabinoids in medical care. 2 THOMAS KIKIS: Actually, yesterday, 3 Sanjay Gupta has his -- a series, "Weed2," and he 4 actually mentions the patent, because it says: How 5 can the U.S. government have a patent on cannabis, 6 and then how can cannabis be illegal? 7 So he makes that argument. 8 And I think, you know, this is the actual 9 patent that we have. We have the 507 Patent, and 10 cannabinoids as antioxidants and neuroprotectants. 11 And I think, ultimately, it comes down to how 12 it's packaged, how's it seed-to-sale operations go, 13 per state. 14 And, I mean, I can have Dean speak to that, 15 actually. 16 DEAN PETKANIS: Well, I think Gaia hit it on 17 the nail -- the nail on the head, in terms of their 18 practices. 19 Colorado is now requiring RFID-chip 20 standards, so every plant and seedling is known from 21 the point that it's been planted, to the point of 22 harvest and delivery to the market. 23 We take it from that point in the packaging 24 solution that we offer for the participants in the 25 market. 1 But I did want to touch on something that's 2 really, I think, is interesting. 3 The detractors that talk about medical 4 marijuana not being proficient in use for patient 5 consumption are also the same detractors that don't 6 want economic growth or stimulate economic growth. 7 This is the second largest cash crop in the 8 United States. We have about 25 billion of illegal 9 product coming into this country untaxed. 10 I dare say that if I tried to bring mangos 11 home from South America, I'd be stopped at the 12 airport. 13 But in this instance, the packaging and 14 standardization of the domestic producers is 15 important, because it also offers jobs -- the 16 creation of jobs, a higher quality of skilled labor 17 in the scientific field, for testing -- laboratory 18 testing on site. 19 And, harvesting, the agricultural business in 20 the model, I think will be a boom for NYSERDA and 21 the state of New York, as well. 22 And when the Controlled Substances Act is 23 violated in on itself, and I think implodes on 24 itself, we will have, I think, a very interesting 25 pharmaceutical-grade naturopathic remedy that can go 1 across border. 2 I know Canada has just approved a health -- 3 the Health Canada initiative. 4 So, if there are products that can be 5 developed in a very innovative nation that we are, 6 scientifically, I think we could make export 7 products out of the field of cannabis. 8 So, I think there's a multiplier effect 9 that's involved here, as well. 10 SENATOR SAVINO: Senator Hassell-Thompson, 11 you had a question? 12 SENATOR HASSELL-THOMPSON: I was -- I, like 13 you, was examining the packaging. 14 And, how does it come? 15 I mean, this is an empty packet. 16 DEAN PETKANIS: Correct. 17 SENATOR HASSELL-THOMPSON: Okay. Is it -- is 18 it, uhm -- I keep wanting to -- you know, like, 19 sometimes coffee is -- 20 SENATOR SAVINO: Ground. 21 SENATOR HASSELL-THOMPSON: No, I'm not 22 talking about the grinding. 23 UNKNOWN SPEAKER: Vacuum-sealed. 24 SENATOR HASSELL-THOMPSON: Yeah, 25 vacuum-sealed. 1 Is it vacuum -- are those vacuum-sealed? 2 DEAN PETKANIS: I can take you through the 3 process. 4 We have a provisional patent that's filed on 5 the process method -- methodology behind us. 6 So, there's robotics equipment that will pick 7 and pack. At the same time, you have labeling 8 equipment. Then you have printing equipment for the 9 labels. 10 But on the robotics equipment, it depends on 11 how you're going to fill it. 12 You can fill it with flower, which has -- you 13 know, is fairly chunky, or you can fill it as 14 grinds. 15 In both cases, you could do a vacuum flush or 16 a nitrogen flush at the point of packaging, and bar 17 seal it, so you can create a hermetic seal within 18 the package. 19 Nitrogen flush is fairly -- it' fairly common 20 in other foods products that are packaged as such. 21 So you do have a bar seal at the end of it. 22 At the top will be a heat seal. And you can also 23 take away the notch there, or leave the notch there, 24 and have a resealable bag. 25 But, it's at the point of packing in the 1 robotics that you can add the hermetics of -- in 2 terms of hermetic sealing process, but doesn't 3 necessarily have to be. 4 SENATOR HASSELL-THOMPSON: Okay, I guess my 5 curiosity, like Diane says, it's almost 6 tamper-proof, which, you know, in looking at it 7 becomes very, very important. 8 Dosages, you know, I'm thinking about medical 9 doses. 10 So, I noticed that there's a coloration, 11 there's a brand. There is a, variety? 12 SENATOR SAVINO: Strains. 13 DEAN PETKANIS: Right, different strains. 14 SENATOR HASSELL-THOMPSON: Is it a variety or 15 a strain? 16 DEAN PETKANIS: Well, there are different 17 strains. 18 Anecdotally, the strains have these 19 wonderfully colorful names. Everybody goes and 20 assesses the value of the product based on the 21 strain name. 22 SENATOR HASSELL-THOMPSON: Right. 23 DEAN PETKANIS: What we are doing in our 24 monograph, is we're taking the chemicals in the 25 plant. We have a 32-point system, a testing system, 1 for third-party certification. 2 16 cannabinoids and 16 terpenoids are 3 assessed, along with the pesticide-control issue and 4 mold-control issues. 5 So, once all that comes into a database, it 6 gets filtered across a previous research white paper 7 that's been done on the use of cannabinoids for 8 medical treatment. 9 So, we'll probably be producing a more 10 accurate -- we'll be producing more accurate data on 11 the use, the medical use, rather than the anecdotal 12 model that says, Use bubble-gum cush for everything. 13 The number in sequencing that we provide on 14 the packaging is meant to provide doctors with an 15 idea where the hot spots on the body are right now, 16 but also to show doctors that, if they were to 17 prescribe something, by means of a treatment for 18 irritable bowel, you probably would not want to be 19 prescribing a high-grade sativa, which is one of the 20 phenotypes of the plant species. 21 You have three phenotypes: 22 You have a sativa, which is highly 23 psychoactive, very operative to the brain; 24 You have an indica, which is more operative 25 to the body; 1 And you have ruderalis, which is less 2 operative than either, but it's still used, 3 traditionally, in Russia as a means and method of 4 treatment, some -- more digestive. 5 So, ruderalis is closer to indica. 6 So with all hybrids of the strains that are 7 out, there one must look at the pharmacology of the 8 plant and try to break down the chemical components, 9 because, essentially, that's what drugs are 10 generally made from. 11 I have to go back to Taxol for a moment, 12 because it's important to note, when you're taking 13 plant-based medicines and you're synthesizing them, 14 ultimately, to make a full drug out of that that 15 goes through the FDA, those processes look at the 16 active ingredients in the plant, try to isolate and 17 purify them. 18 Similarly, we have a very complex plant here 19 in the flower, and doctors should know what the 20 ratio of those chemicals can and cannot do. 21 You don't want to have contraindications. 22 You don't want to give somebody who may be 23 slightly schizophrenic a high-grade sativa that 24 over-occupies the CB1 receptor. And in that 25 instance, you can have an abusive process of 1 medicine. Lack of knowledge. 2 So we look to improve on that. That's our 3 goal. 4 SENATOR HASSELL-THOMPSON: Okay, because that 5 was my curiosity, in terms of, when I look at the 6 package, for instance, I'm thinking about a 7 prepackaged medication, and I'm thinking of it in 8 terms of the doses. So the dose will be 9 50 milligrams, let's say. 10 But that's not what I heard you just 11 describing in terms of how medical marijuana works. 12 DEAN PETKANIS: It's a very good question, 13 Senator. 14 And I know I have some colleagues in the 15 industry that have formed solutions that already 16 have dosage regulation; however, that may not meet 17 the need of a doctor prescription. And, 18 administration is a challenge. 19 Say you have a patient that says, I just want 20 to smoke the flower, well, the doctor has to be 21 knowledgeable about weights and measures. 22 And based on what it's in that package, and 23 the potency of it, a doctor can say that 24 three-quarters of a gram will equal one cigarette, 25 and you need not smoke more than half of that 1 cigarette a day. 2 And that will give you the gram requirement 3 or the dosage milligram requirement, based of that 4 package, based on the cannabinoid structure. 5 And that's where, I think, the clinical 6 practice comes into play. Doctors have to 7 understand weights and measures when they're giving 8 a patient a prescription. 9 They do it now, but tablets are already in 10 the prescribable form. 11 But that's the flower. 12 Then you have products that are made as 13 infused products or capsuled products, or flowers 14 that have been dried and ground and encapsulated. 15 Those already have a body of weight to them, where 16 they will have a milligram dosage as prescribed. 17 But that's another matter, I think, for 18 industry growth. 19 Right now, from what I understand today, that 20 everybody's talkings about just the flower. 21 SENATOR HASSELL-THOMPSON: Just the flower. 22 DEAN PETKANIS: Yeah. 23 SENATOR HASSELL-THOMPSON: Okay. 24 All right, because, you know, many of us in 25 the Legislature are conversant, I guess, with the 1 legislative side of it, but very few of us are at 2 all conversant with the kinds of questions that 3 we're asking. 4 So, you know, we're not just asking to fill 5 up time. We're asking because we really need to be 6 able to understand it, particularly if we have to 7 "sell it" to our colleagues in terms of getting 8 their support for it. 9 So, I appreciate you answering the questions. 10 DEAN PETKANIS: My pleasure to do so. 11 SENATOR SAVINO: Thank you. 12 [Applause.] 13 SENATOR SAVINO: Next -- there's been not a 14 lot of discussion about what it takes to actually 15 finance a medical-marijuana business; and, so, we're 16 going to hear from Jake Schrader, who's co-president 17 of Articulated Investors, to talk about setting up a 18 business, and what it would look like. 19 Then we're going to hear from Jason Pinsky 20 from the cannabis industry. 21 And then we're going to shift back to 22 patients. 23 Before we start, Dean, can I keep this? Or 24 is there -- 25 DEAN PETKANIS: Yes. 1 SENATOR SAVINO: Yes? Thank you. I can show 2 it to people. 3 Thank you. 4 JAKE SCHRADER: Senator Savino, Roundtable 5 participants, and members of the audience: 6 My name Jake Schrader, and I am co-president, 7 along with Phil Gottlieb, of Articulated Investors, 8 a New York-based company that has been exploring, 9 researching, and recently investing in the 10 medical-marijuana industry throughout the 11 United States. 12 Prior to forming our company, I was a partner 13 at Cantor Fitzgerald in New York City. 14 I'm a born-and-bred New Yorker. I have never 15 lived anywhere else. I work here, and I am raising 16 my family here. 17 That is why I am pleased to support the 18 legislation that you have worked so hard at 19 crafting. 20 At Articulated, we have studied, researched, 21 and seen firsthand the medical-marijuana industry 22 and its associated parts, and we believe that the 23 New York program will be the best in the 24 United States should it become law. 25 As investors, and developers of support 1 products, and investors in existing businesses, our 2 discipline has always been to work to identify good 3 actors within the industry, and then apply our 4 capital in order to help them succeed. 5 Unfortunately, many states have programs that 6 are not nearly as thorough or well-regulated as what 7 New York is proposing; and, so, identifying the good 8 actors in those states can be very difficult, and 9 there are some states that we simply will not 10 consider working in. 11 With your legislation, New York will become 12 not only the state in which we live, but also one in 13 which we are able to work directly as opportunities 14 present themselves to us. 15 We see clearly that the framework you have 16 put together will allow for a tightly regulated, 17 controllable medical-marijuana program that benefits 18 the public health of New York and has safeguards 19 against diversion. 20 These are all integral to ensuring the 21 integrity of the program, and fall well within the 22 eight points as outlined in the August 29, 2013, 23 Department of Justice memorandum. 24 Further, the limited licensing model that you 25 have put forth will allow for adequate and efficient 1 enforcement and administration of the program by the 2 State of New York and the host communities. 3 The opportunities for economic benefit are 4 many. The State, the host communities, and 5 taxpayers stand to benefit, both from the new tax 6 revenues, and from cutting out the portion of 7 law-enforcement costs that is currently associated 8 with the thousands of New Yorkers forced to use the 9 black market to meet their medical needs. 10 In addition, thousands of direct and indirect 11 jobs will be created within the production 12 facilities and in the dispensing facilities, as well 13 as supporting them. These will comprise all types 14 of professionals; from cultivators, to executives, 15 accountants, lawyers, administrative, security, 16 marketing, digital media, researchers, and many 17 more. 18 In Colorado [laughing]. 19 Forgive me. 20 In Colorado, a state with approximately 21 one-quarter of the population of New York, 22 12,000 direct and 8,000 indirect jobs were created 23 under the medical-only model. 24 We see economic opportunities in technology, 25 which Articulated is developing, to assist with 1 cultivation, monitoring, and control; in real-estate 2 investment and construction; in research and 3 development; and we are also exploring an investment 4 in a consulting company focused on the industry. 5 Allowing for multiple delivery methods in 6 addition to the cannabis flower, such as oils, 7 infused products, tinctures, creams, and more, to 8 suit a patient's needs will also give patients more 9 choices, and the ability to determine, with their 10 doctor, what is best for them. 11 And it cannot be overstated that this also 12 means more jobs and economic benefit. 13 While the economics alone are compelling, 14 that is not the reason we got involved with this 15 industry, nor why I am here before you today. 16 The reason is, that the passaging of this law 17 will have a tremendously positive impact on the 18 health and well-being of hundreds of thousands of 19 New Yorkers for years to come. 20 The real opportunity here is to do well 21 financially by doing a really good thing for our 22 families and our neighbors. 23 Medical-marijuana patients will benefit from 24 not having to buy their medicine in the street where 25 they have no idea what they are getting or what 1 chemicals might have been used to produce that 2 product. 3 There is obviously no quality control or 4 safeguards for these patients who are at such a 5 difficult point in their lives that they are 6 currently willing to risk arrest for their 7 health care. 8 I, like everyone in this room, knows or knew 9 someone who could potentially benefit from using 10 medical marijuana. 11 In my case, my mother has long suffered from 12 sarcoma which has required a wide range of highly 13 invasive medical care. Most recently, she underwent 14 a major second major surgery on her scalp, and due 15 to the particular nature of her case, she is now 16 facing a course of aggressive chemotherapy. 17 While she has never been a cannabis user, she 18 is fully aware of what Articulated is set up to do, 19 and she has asked about the possibility of obtaining 20 some to offset the side effects of that chemotherapy 21 if they are as unpleasant as she fears. 22 She, too, is a lifelong resident of New York, 23 born in Queens, currently residing in a small town 24 called Philmont. 25 And it is with absolute conviction that I sit 1 here before you today and ask that she be given the 2 choice to use this medicine if it helps offset her 3 considerable suffering as she progresses through her 4 course of treatment. 5 [Applause.] 6 JAKE SCHRADER: I thank you again for the 7 opportunity to speak, and I ask again that you 8 please pass this legislation for the economic 9 benefits, for all New Yorkers who deserve another 10 option to discuss with their doctor, for my mother, 11 and because it is the right and compassionate thing 12 to do. 13 [Applause.] 14 SENATOR SAVINO: Thank you, Jake. 15 Thank you for, you know, sharing the personal 16 side of this, as well as the professional side of 17 it. 18 I do -- I would like you, though, to, 19 perhaps, for those who are listening on the live 20 stream, to kind of explain the difficulties of 21 raising money to begin to operate a 22 medical-marijuana program. 23 I don't think people really -- can't just go 24 to a bank and borrow money, because of the 25 restrictions by the federal government. 1 So, if you could just speak a little bit? 2 JAKE SCHRADER: Sure. 3 You can't even go to a bank and deposit 4 money, let alone borrow it. But, that's probably a 5 larger topic. 6 At this point, traditional avenues of capital 7 are entirely shut off to the medical-marijuana 8 industry. 9 And that provides an opportunity for 10 unregulated pools of capital, such as Articulated, 11 to come in and become a de facto investment bank, or 12 provide capital, that, in any other industry with 13 this sort of growth. 14 And I think the political and, sort of, 15 tailwinds that seem to be behind the industry, 16 typically, banks would be falling over themselves to 17 become involved, but because of the federal 18 prohibition, they're simply not able to make loans 19 at this point, or investments. 20 SENATOR SAVINO: It sounds somewhat like, in 21 the garment industry, they still have them, but they 22 used to rely very heavily on factors, as opposed to 23 banks, where -- that that's where they would be able 24 to go to get a line of credit, or sell their 25 liabilities or their receivables. 1 Is it similar to that? 2 JAKE SCHRADER: My grandfather is in the 3 garment industry, and he never really liked the 4 people who were his factors. 5 So I hope that we're providing a better 6 service than that, but the analogy is fairly true. 7 I think anytime the dynamics of a free market 8 are disrupted by a set of regulations or a set of 9 government intervention, then that free market 10 doesn't function as efficiently as it otherwise 11 would. 12 SENATOR SAVINO: Senator. 13 SENATOR HASSELL-THOMPSON: Thank you. 14 I heard you talk about the profitability of 15 the industry. 16 But it's interesting, I just left a press 17 conference before coming here, of people who are 18 deeply concerned about, as I am, the rise in the 19 numbers of cases of hepatitis C. 20 And -- but the good news is, for that 21 community, there is a cure. 22 But one of the gentlemen in the audience 23 said: You know, you're encouraging us to gain 24 access, and it's available, but it's not accessible 25 because the cost is prohibitive. 1 Because he said that he was part of a 2 demonstration program, so he was able to access the 3 drug and the treatment. 4 We need to be sure that if we're going to be 5 doing this, that price does not become a barrier, 6 you know. 7 And I know that people say, Well, people flew 8 to Mexico, and they flew here, and they flew there, 9 to access it. They can afford to pay. 10 Well, most people can't afford to pay. 11 If it -- if that would -- you know, if that 12 were not the case, then so many more people would be 13 able to access. 14 We need to be sure that our participation, 15 while it -- certainly, none of us have a problem 16 with people making money -- I don't. I mean, 17 I don't have a problem with people making money. 18 I want them to be rich, and I want them to be 19 philanthropic with that richness; so, that's not the 20 issue. 21 But the issue here, is to ensure that we 22 don't create a barrier for people to access it once 23 we have created the market. 24 And I don't hear any guarantees, and I'm not 25 sure that there's a way. 1 Yes, it's a free market, and I'm all for 2 that, but, I don't want us to have people become 3 disillusioned because we make it available through 4 legislation, but then it's not avail through cost 5 which we would then not control. 6 SENATOR SAVINO: That is such an important 7 question, and I can't believe we didn't put it to 8 Meg when she was here, so that's why I signaled for 9 her to come back down. 10 She can talk about the -- what does it cost? 11 What do patients pay? And how has the creation of a 12 legal medical-marijuana market affected the price of 13 marijuana in Colorado? 14 MEG SANDERS: I want to touch on a couple of 15 things. 16 This is an initial step. I mean, ultimately, 17 you know, we would love to see insurance, you know, 18 help cover the cost of medicine, especially 19 something as effective as medical marijuana. 20 This is a baby step. 21 So the first step is, let's make sure that 22 patients have access. 23 The second step is, obviously, keep pushing 24 the federal government to get on board with this 25 medicine, and make sure that insurance companies and 1 banks can help support this industry, and make sure 2 that everyone has access to it. 3 What I can speak to specifically, and I can 4 use my mother as an example, who's a -- you know, 5 she's a retired schoolteacher. She was on multiple 6 medications for arthritis and for high blood 7 pressure, and she became a patient last year. 8 And her medication, even though she has 9 insurance, and has a good pension from her many 10 years, 20-plus years, as a schoolteacher her 11 medication was still several hundred dollars a 12 month, and that's just for traditional pharma. 13 She's off of most of her medications, and is 14 using a topical, and a sublingual at nighttime, to 15 help her with her arthritis. 16 And the byproduct of it is, her 17 blood-pressure issues subsided, as well. 18 So part of the issue is that, in Colorado, 19 the cost of medical marijuana is probably the lowest 20 in the United States. We are very competitive 21 market. 22 The other part of this, as a responsible 23 business owner, we do allow for patients to have a 24 sliding scale. You know, we've made many, many 25 low-cost options available to people on fixed 1 incomes, to our veterans. 2 And we highly support and recommend that. 3 And that is one of our tenets, as business 4 owners, that we're able to offer reduced-price 5 product to patients that need it. 6 And believe me, there's many ways that we can 7 make that work in our business model, and I think 8 that that's important. 9 The other part that I want to touch on is, 10 this goes back to being able to actually use the 11 dried flower, which is probably the most economic 12 way to use the product at this point, in smokeable 13 form. 14 We often hear: Oh, this is smoking. It's 15 got to be bad. 16 Well, there are studies that are suggesting 17 that it's not. And vaporizing isn't always an 18 option. It's more of a -- it can be much more 19 expensive, as far as buying the oils and the actual 20 device to vaporize products. 21 So, by offering a range of product, you're 22 able to offer a range of prices. 23 But, also, by having responsible business 24 owners at the table, as part of their business plan, 25 showing how they're going to be able to offer 1 low- and reduced-cost medicine to patients that need 2 it, I think that that's another critical part of how 3 we, potentially, help choose business owners that 4 are going to be potential licensees in this market. 5 And then just to circle back around, we are 6 finding that patients that are using medical 7 marijuana aren't having to use their prescription 8 drugs, which often much, much more than medical 9 marijuana costs. 10 SENATOR HASSELL-THOMPSON: Well, you know, 11 I appreciate that, but, you know, there's a 12 difference between "available" and "accessible." 13 And when we talk about treatment being 14 available, that's one set of dynamics. 15 But, I would like to hope that, in New York, 16 we would adopt the model that you are describing, to 17 ensure that, through a sliding scale, through many 18 of the programmatic designs that you named, that we 19 will continue to make it, not only available, but 20 accessible, because that's a major concern for me. 21 MEG SANDERS: It is, and I completely agree 22 with you. 23 And I might suggest, as part of the 24 application process, that might be part of the 25 questioning, as far as: How are you going to 1 provide medicine so that it's accessible? 2 SENATOR SAVINO: And I think that's a 3 critical point that you raised, Senator. 4 One of the mistakes I think that was made in 5 New Jersey is, when they adopted the 6 medical-marijuana statute, adding in the length of 7 time it took them to actually implement it, they put 8 restrictions, by region, and they found, quickly, 9 that they were not going to be able to meet the 10 needs of the population. 11 So we have to be careful, as we do this, that 12 we don't put those limits. 13 There should be limited licensing, though. 14 We don't want them popping up everywhere, because 15 then you can't control it. 16 But we -- you know, New York is a very big 17 state with a huge diversity in population. 18 We need to make sure that product is 19 accessible, and also affordable, for the patients 20 that are going to need. 21 MEG SANDERS: I completely agree with you. 22 One other thing that I would add is, the 23 other importance of that is making sure that, when 24 you are selecting registered organizations to grow 25 this product, that they have significant experience 1 in the industry. 2 It is a unique plant. It's not like growing 3 a tomato. And growing indoors is a very challenging 4 environment to do this. 5 And, so, the experience helps ensure a steady 6 supply, which ultimately translates into 7 stabilization of price. 8 SENATOR SAVINO: Thank you. 9 SENATOR HASSELL-THOMPSON: Thank you. 10 MEG SANDERS: Thank you. 11 SENATOR SAVINO: Next we're going to hear 12 from Jason Pinsky from the cannabis industry. 13 [Applause.] 14 JASON PINSKY: Good afternoon. 15 SENATOR SAVINO: Good afternoon. 16 Is it afternoon already? 17 No, it's still morning; five to twelve. 18 JASON PINSKY: Good morning. 19 SENATOR SAVINO: It's afternoon somewhere in 20 the world. 21 JASON PINSKY: My name is Jason Pinsky. My 22 primary background is in technology. 23 I've been a cannabis consultant in medically 24 legal states and abroad since 1998. 25 I've recently come on board as CTO for 1 United Cannabis Corp. 2 I've been a New York State resident most of 3 my life, and currently reside in Brooklyn. 4 I've also been a cannabis user, enthusiast, 5 and activist for over two decades, with a focus on 6 botanical extraction, sciences, and technology. 7 United Cannabis Corp. was founded to provide 8 leadership for the medical-cannabis industry by 9 offering patient-driven solutions. 10 Since 2009, our founders have successfully 11 served over 15,000 patients per year, and currently 12 cultivate hundreds of medical-grade cannabis 13 strains, including more than 15 unique CBD-dominant 14 varieties. 15 Our proprietary, full spectrum cannabinoid 16 program, Act Now, currently manages over 17 200 sponsored patients suffering from chronic pain, 18 drug abuse, inflammation, glaucoma, PTSD, 19 neuropathy, multiple sclerosis, fibromyalgia, 20 Chron's disease, seizures, epilepsy, paralysis, 21 autoimmune, autism, tumors, HIV/AIDS, and many types 22 of cancers, as well. 23 While we support CBD-rich medicine, we do not 24 support CBD-only legislation. 25 The endogenous cannabinoid system, named 1 after the plant that led to its discoveries, is 2 perhaps the most important physiologic system 3 involved in establishing and maintaining human 4 health. 5 Endocannabinoids and their receptors are 6 found throughout the body and in the brain, organs, 7 connective tissues, glands, and immune cells. 8 In each cell and all tissues, the 9 endocannabinoid system performs different tasks, but 10 the goal is always the same: homoeostasis; the 11 maintenance of a stable internal environment, 12 despite fluctuations in the external environment. 13 Cannabis sativa, indica, ruderalis, and hemp 14 cultivars have been on our planet for over 15 35 million years. These plant species were one of 16 the first four plants on earth to reproduce via 17 airborne pollination methods. 18 As these plants spread throughout the globe, 19 they developed different compounds, including 20 cannabinoids, terpenoids, flavonoids, et cetera. 21 Cannabis sativa and cannabis indica created 22 over 800 landraces in this process and developed a 23 full spectrum of cannabinoids. 24 The genetic code for hemp and ruderalis 25 focused on survival traits and lacked the full range 1 of compounds in cannabinoids compared to indica and 2 sativa. 3 Utilizing all of the chemical compounds in 4 cannabis secures the greatest probability of success 5 in medical research and application, which is why we 6 favor full-spectrum cannabinoid therapies over 7 CBD-only alternatives. 8 The Act Now program is a comprehensive, 9 full-spectrum cannabinoid-therapy program that 10 utilizes the entire cannabis plant, controlling 11 specific cannabinoid ratios, accurate dosing, and 12 multiple delivery methods. 13 The Act Now program is designed to help 14 patients manage their pain, appetite, sleep, 15 inflammatory conditions, neuropathic dysregulation, 16 mood, digestive disorders, and improve their overall 17 cognitive function. 18 This full-spectrum cannabinoid program was 19 helped -- was designed to help restore the 20 communication pathways in the central nervous 21 system, immune system, and correct deficiencies 22 within the endocannabinoid system. 23 Our research partners, Dr. Brent Reynolds and 24 Dr. Dennis Stenler [ph.], have concurred with our 25 findings that CBD-only therapies restrict the 1 plant's full potential and limits the medicinal 2 properties offered by cannabis. 3 We have documented hundreds of case studies 4 with before and after results which prove that 5 full-spectrum cannabinoid therapies are able to 6 reach a wider bandwidth of patient conditions. 7 The Act Now program was able to help Karen 8 reach a complete remission stage within 120 days. 9 Karen was diagnosed with metastatic cancer, with 10 tumors in the breast, bone, and liver. 11 The Act Now program helped Chrissy [ph.], a 12 parent and nurse, manage her 11-year-old daughter's 13 conditions, including autism, a constant state of 14 seizures, epilepsy, closed spinal bifida, and severe 15 hip dysplasia. 16 The Act Now program was able to help this 17 11-year-old girl reduce her meds down to only 18 one pill. 19 In addition, the program improved her 20 cognitive-function test results by 200 percent, 21 reduced her seizures by 99 percent, controlled her 22 autism, reduced her paralysis by 80 to 90 percent. 23 This was accomplished within five months of 24 utilizing the full spectrum of cannabinoids used in 25 the Act Now program, and might not have been 1 possible if she was restricted to CBD-only 2 medication. 3 The Endocannabinoid Research Group is a 4 multidisciplinary research group established in 5 1995, and based in the laboratories of several 6 institutes and the Italian National Research 7 Council, and universities of Naples and Salerno 8 area. 9 The subjects of the scientific research 10 carried out by this group are endocannabinoids. 11 Raphael Mechoulam is an Israeli professor of 12 medicinal chemistry and natural products at the 13 Hebrew University of Jerusalem in Israel. 14 Professor Mechoulam is best known for his 15 work in the isolation structure, elucidation, and 16 total synthesis of delta-9-tetrahydrocannabinol, the 17 main active principal of cannabis, and for the 18 isolation and identification of the endogenous 19 cannabinoids, an anandamide from the brain, and 20 2-AG from peripheral organs. 21 These two works of research have merely 22 opened our minds to the endless possibilities of 23 full-spectrum cannabinoid therapies. 24 Accepted delivery methods include inhalation, 25 digestion, sublingual, and transdermal applications. 1 Inhalation is a fast-acting delivery method, 2 allowing controlled doses of cannabinoids to enter 3 the bloodstream within 15 minutes, and has already 4 been proven to decrease Chron's disease by 5 52 percent. 6 The endocannabinoid system is also located in 7 our digestive system, and the receptors located in 8 our peripheral organs require interaction to 9 stimulate the corresponding receptors in our brain. 10 Sublingual, the platform for 11 GW Pharmaceuticals, offers the fastest delivery 12 method into the bloodstream to help manage pain. 13 In 2014, our product-development team has 14 developed proprietary isolation techniques for 15 accurately-dosed transdermal delivery methods via 16 our skin. 17 The combination of these delivery methods, 18 and others in development, help in standardizing the 19 delivery of full-spectrum cannabinoid therapies. 20 Just a little bit about us: 21 Our president and board chairman is 22 Ernest Blackman. He's' a horticulturalist and 23 entrepreneur with over 20 years of experience, 24 including 5 years in the commercial cannabis 25 industry. 1 Mr. Blackman is currently an owner and master 2 grower at River Rock, Colorado, and is responsible 3 for the production, processing, workflow management, 4 just-in-time inventory control, security staff, and 5 training and recruiting. 6 Blackman has developed a proprietary grow 7 method, based on an organic standard, to aid and 8 stable chemical synthesis to limit side reactions 9 that diminish yield. 10 Tony Verzura currently runs day-to-day 11 operations of the Act Now program, patient-care 12 programs, product development, accredited training 13 protocols, QA, continued education, and oversees 14 marketing efforts. 15 Mr. Verzura has also been featured on "CNBC"; 16 "Money Talk"; "Washington Post"; and publications 17 and culture magazine, "THC Magazine" and 18 "High Times." 19 Our research, medical, and 20 product-development team includes 21 Brent Reynolds, Ph.D. 22 Dr. Reynolds received his Ph.D. in '94 from 23 the University of Calgary, during which time he and 24 Sam Weiss discovered the existence of a stem cell in 25 the adult central nervous system, challenging the 1 centrial [ph.] dogma that the adult brain was unable 2 to produce new neurons. 3 He co-founded NeuroSpheres, Limited, where he 4 was vice president of research. And in 1999, 5 published the first report on transdifferentiation 6 of cells derived from one germ layer into functional 7 cells of another germ layer. 8 Professor Reynolds holds 16 U.S. patents 9 related to neuro stem cells, and his lab is 10 currently focused on the development of 11 stem cell-specific assays and manipulation of neuro 12 stem cells, and understanding the role that 13 solid-tissue cancer stem cells play in the tumor 14 initiation in metastasis. 15 Dennis Stenler served as the executive 16 director of the McKnight Grant Institute of the 17 University of Florida, from 2004 to 2010, and is 18 currently with Joseph Bangor Schantz [ph.], 19 professor of medical research in the department of 20 neurological surgery for the University of Florida 21 College of Medicine. 22 The major research goal of Stenler's program 23 was to develop stem-cell therapies for the treatment 24 of debilitating neurological diseases. 25 He has wide interest in the use of stem cells 1 for cell-replacement therapies in human neurological 2 disease; however, we've only begun to appreciate the 3 cell and molecular biology of these cells which hold 4 great promise for transplantation of other 5 therapeutics. 6 Dr. Stenler's also using new molecular 7 approaches to characterize novel developmental genes 8 involving neurogenesis: cell survival and cell 9 death. 10 The main strategy of these studies is to 11 exploit well-known approaches for gaining access to 12 signaling pathways that direct cell survival, 13 proliferation, and fate determination. 14 As gene-expression profiles are refined, 15 future approaches can rely on stem cells as vehicles 16 for gene therapy in neurodegenerative disease. 17 Dr. Stenler is funded by grants from NIH. 18 He has also previously mentored graduate 19 training. 20 [Unintelligible] Walton, Ph.D., is the senior 21 scientist at the Estel's [ph.] Research of America 22 located at the University of Chicago. 23 Last night, Sanjay Gupta aired Part 2 of his 24 groundbreaking documentary on cannabis. 25 As more data comes to light, we're finally 1 seeing the mainstream media take a stance on 2 utilizing full-spectrum cannabinoids for a wide 3 array of conditions. 4 Gupta and Mechoulam refer to this as the 5 "entourage effect." 6 Think of it like this: 7 There are more than 480 natural components 8 found within the cannabis plant, of which 66 have 9 been classified as cannabinoids; those chemicals 10 unique to the plant, including 11 delta-9-tetrahydrocannabinol. There are, however, 12 many more, including CBG, CBC, CBD, CBDA, THC, THCA, 13 CBN, CBDL, CBL, CBE, CBT, and other miscellaneous 14 types. 15 Other constituents of the cannabis plant 16 include amino acids, proteins, enzymes, sugars, 17 hydrocarbons, acids, lactones, steroids, et cetera. 18 Mechoulam, along with our researchers, 19 believe that all of the compounds of the cannabis 20 plant exert a therapeutic effect more than any 21 single compound alone. 22 While science has not shown the exact role or 23 mechanism for all these various compounds, evidence 24 is mounting that these compounds work better 25 together than in isolation. 1 In closing, I want to thank you for your 2 time, and encourage you to pass the 3 Compassionate Care Act this session. 4 SENATOR SAVINO: Thank you, Jason. 5 We've been joined by Senator George Maziarz 6 from Western New York. 7 [Applause.] 8 SENATOR SAVINO: I have one question, because 9 you detailed quite a lot of research information 10 there. 11 Has anybody from the New York State 12 Department of Health reached out to you, or anybody 13 else that's testified today in the industry, to talk 14 to you about any of the research that you have 15 available, how a medical-marijuana program would 16 work? 17 JASON PINSKY: I have not been contacted, but 18 I'm certainly available. 19 SENATOR SAVINO: Has anybody else who 20 previously testified? 21 No? 22 Thank you. 23 Thank you. 24 JASON PINSKY: Okay. Thank you. 25 SENATOR SAVINO: We are going to shift back 1 to patients now. 2 We're going to have Dawn Carney from 3 Mount Vernon, and Susanne Truesdale from 4 Clifton Park. 5 Are you here? 6 Dawn and Susanne, are they here? 7 UNKNOWN SPEAKER: She'll be back. 8 UNKNOWN SPEAKER: They'll be back. They had 9 to step out. 10 SENATOR SAVINO: All right, so I'm -- then 11 I'm going to move forward to, we have a group of 12 veterans. 13 UNKNOWN SPEAKER: Susanne is here. 14 SENATOR SAVINO: Oh, okay. 15 The veterans, come down, and you'll be next. 16 So, Susanne Truesdale from Clifton Park. 17 Thank you. 18 SUSANNE TRUESDALE: Good morning. 19 SENATOR SAVINO: Good morning. 20 SENATOR MAZIARZ: Good morning, Susanne. 21 SUSANNE TRUESDALE: [Microphone turned off.] 22 For over five years, I have faced cancer 23 twice. I was first diagnosed in 2008, and then 24 again in 2009. 25 SENATOR SAVINO: Excuse me, Susanne. 1 SENATOR MAZIARZ: Susanne, I don't think your 2 mic is on. 3 Could you just hit that button there. 4 SENATOR SAVINO: Press the button. 5 SENATOR MAZIARZ: Is the red light on? 6 SUSANNE TRUESDALE: Yes, now it is. 7 SENATOR SAVINO: Okay. 8 SENATOR MAZIARZ: There it is. 9 SUSANNE TRUESDALE: I'm Susanne Truesdale, 10 and I live in Clifton Park. 11 In 2008 I had a cancer diagnosis, and it 12 returned in 2010. It was in my lymph nodes and it 13 was a very serious illness. 14 And through -- over two years of time post 15 that diagnosis, I suffered greatly. I had many, 16 many issues as a result of radical surgery, 17 radiation treatment, and chemotherapy treatments. 18 I developed over a two-year period many new 19 conditions, illnesses that I now had to manage, and 20 I was prescribed over a dozen different 21 pharmaceuticals which did not work for me. They 22 were ineffective, and they created further issues, 23 where my doctors wanted to prescribe additional 24 medications to manage the side effects of the 25 initial medications. 1 I had numerous issues, including an emergency 2 surgery -- actually, two emergency surgeries, 3 unexplained fevers, and hospitalizations, and 4 tremendous pain. 5 As a result of my radiation treatment, a year 6 later, I developed bilateral sacral fractures. 7 Basically, my sacrum was fractured. 8 And, the radiation treatment continues to 9 work for many months, and so it was a year later 10 after I had completed my radiation treatment that 11 I had sacral fractures. 12 And the treatments also weakened my bones, 13 and so at a very young age, I was diagnose 14 osteoporoses. And, I actually did have a rib 15 fracture that was very painful. And I was 16 prescribed very strong medications, hydrocodone. 17 And, you know, looking back on all of the 18 symptoms and suffering that I endured over 19 two years, I can't believe that, with all the 20 medications I could obtain, I could not obtain, 21 legally, medical cannabis. And I think that is a 22 downright shame. 23 We all know people who have had cancer. 24 I read a statistic the other day, 1 out of 4 25 people will be diagnosed in their lifetime. 1 So, no one is immune from illness, period. 2 And I support medical cannabis for a variety 3 of medical conditions, including cancer. 4 That's just my personal story, so that's why 5 I'm here today. 6 I thank you for co-sponsoring the New York 7 Compassionate Care Act, and I ask for immediate 8 vote, and passing this important legislation, so 9 that no more New Yorkers will suffer. 10 Thank you. 11 [Applause.] 12 SENATOR SAVINO: Thank you, Susanne. 13 SENATOR SAVINO: Next, we're going to move on 14 to, we have a group of young veterans: 15 Amy Reising, Leon -- 16 LEO FEIT: Leo. 17 SENATOR SAVINO: Leo? 18 -- Leo Feit. 19 So who -- I have on my list, four. 20 So tell me who's here. 21 Amy? 22 AMY REISING: [Microphone turned off.] 23 Amy, Kunle, and Leo. 24 There was a typo. They're my advocates 25 [unintelligible]. 1 My name is Amy Reising, and I'm a Global War 2 on Terror vet. 3 [Microphone turned on.] 4 My background: 5 I was a lobbyist for the Boeing Corporation, 6 and I left in 2010 to pursue veterans legislation 7 when I was denied VA care, because I made too much 8 money under the Bush Statutes. 9 In Delaware in 2010, I got posttraumatic 10 stress put back on the bill. 11 And I thank you for co-authoring this bill, 12 and using the Delaware legislative piece. That is 13 actually my piece. 14 So I started Veterans for Alternative Care 15 here in New York State, out of Ithaca/New York City. 16 And, we have an awesome studio and garden where we 17 do a lot of occupational therapy and 18 transformational healing from our war wounds. 19 And I am here today to talk about 20 posttraumatic stress, traumatic brain injury, and 21 limb loss due to action, for -- obviously, for 22 cannabis, and how cannabis can help. 23 And I was paying attention earlier when we 24 were talking about CBD-only legislation. 25 And I know that there have been some concerns 1 in New York State about CBD-only. 2 And I think, also, like others have 3 mentioned, it's a very wrong move to have a CBD-only 4 state or -- and -- to Senator Ball's statements 5 about inhaling, and being concerned about smoking, 6 I think, you know, for people with limb loss, 7 especially CBD ointments and different tinctures are 8 very helpful for them. 9 And I think that, for us, as veterans, so 10 many veterans are getting addicted, like you said, 11 to opiates and different pharmaceutical drugs. 12 And here we have our endocannabinoid system. 13 And when you have posttraumatic stress or you 14 go through an extremely situation, your body stops 15 producing, or doesn't produce as much, anandamide, 16 which is the chemical your brain makes that binds 17 your free endocannabinoids in your -- or, your 18 cannabinoids in your endocannabinoid system to your 19 CB1 receptors. 20 And for somebody like me, you know, I might 21 only be at 30 percent, where you might be at 22 100 percent; and, so, THC is actually the better 23 drug when it comes to your brain and function, 24 instead of CBD, and something like that. 25 So, like, for posttraumatic stress, you need 1 a better THC strain than a CBD. 2 And that's also, like, you know, something 3 that we talked about, and it's very disconcerting, 4 for a number of reasons, that people aren't really 5 taking veterans issues, and looking at cannabis as a 6 veterans issue, because these pharmaceutical 7 companies have multimillion-, sometimes 8 billion-dollar contracts, you know, with the 9 government. 10 And, for us, we have an opportunity, as 11 veterans, to come home and have some 12 transformational healing in gardens, and be able to 13 grow our own medicine, and have 100 percent -- a 14 360 program, if you will, where veterans can run 15 their own grow operation, and, you know, 100 percent 16 organic, everything else. 17 And then you could have transformational 18 healing, putting back, like, all of the trim or 19 whatever is left over of the plant matter, you can 20 turn it back into paper and make art of it. 21 And that's kind of what we do in Ithaca. You 22 know, we cut up combat uniforms and make paper, and 23 make new pieces of art out of acts of war. 24 And, so, that's something that we would 25 definitely love to do, is, like, add 1 food-and-medicine forests to our garden, 2 essentially, out there, and be able to be 3 100 percent veteran-owned and -run, and everything 4 else. 5 Because what happens for us is, a lot of 6 these VAs, they've started putting their own wings 7 for Operation Iraqi Freedom, Operation Enduring 8 Freedom, and Dawn veterans, because -- especially 9 women, because we have experienced such traumatic 10 instances. And going in public, and especially 11 going to the VA, is very, very daunting. 12 And, for us, I know, like, the VA is not 13 going to want to handle cannabis. 14 And most people don't know that the VAs 15 already backdoor legalized cannabis through the 16 federal government. 17 The VA issued an edict in 2010 that said 18 every patient who is getting care in a legal state 19 could still get care if they tested positive for 20 cannabis, because, up until then, up until 2010, if 21 you tested positive for cannabis in your drug test, 22 they would deny you care. 23 And I'm a mother of a 6-year-old child. I'm 24 a single mother. For me, I can't go home and take 25 narcotics, because I still have my son to contend 1 with. 2 And a lot of people haven't really thought 3 about single mothers and -- as being veterans, and 4 what that means for us, because, you know, are we 5 afraid to lose our children? Absolutely. 6 I've watched three personal, close friends of 7 mine get their children taken away from them due to 8 posttraumatic stress. 9 And this -- like -- especially, like, if you 10 give me a narcotic that is given to me by the 11 government, I can go home with that, legally. 12 But I still -- really, it's hard for anybody 13 to be under a narcotic and care for a child. 14 However, you know, it's illegal for me to 15 give myself care, and be able to care for my son. 16 And I feel like, for us, you know, in order 17 to stop the war, you know, essentially, we need to 18 stop the war, but we need to stop the War on Drugs 19 and the war on soldiers at home, because I'm 20 fighting this whole other war for care, when I've 21 already fought a war. 22 SENATOR SAVINO: Thank you. 23 You raised an important point, and I'm glad 24 you did, because I was going to ask about it. 25 Since many veterans receive their medical 1 care from the Veterans Administration, which is a 2 federally-run health-care delivery system, what 3 happens if you are in a state that has medical 4 marijuana, and you go to the VA, do they deny you 5 treatment? 6 AMY REISING: See, if they were denying -- 7 they were denying treatment to vets even after the 8 2010 edict. But in the last year and a half, we've 9 taken three states to court. Most recently was 10 Florida. 11 We testified to a Florida grand jury, we also 12 testified to an Arkansas grand jury, because, you 13 know, soldiers were being denied care in 14 right-to-use states. And, you know, obviously, the 15 only recourse is legal. 16 So, that's completely how we've taken on this 17 task. 18 And, moving forward, the government has to 19 give veterans care at the VA level, as well as, 20 like, receiving cannabis. 21 So, if New York -- like, for instance, if 22 New York State becomes a legal state, then the VA 23 has to administer care regardless, because of the 24 2010 edict. And if not, you know, obviously, you 25 take them to court. 1 SENATOR SAVINO: What's the traditional 2 treatment plan for posttraumatic stress? 3 What is the traditional -- 4 AMY REISING: Psychotropics. And there's, 5 like, a myriad. It's a Molotov cocktail. 6 And for us, personally, I know one person who 7 has overdosed on their medication. He died in 20 -- 8 right after -- yeah, in December of 2011, he passed. 9 And that's just, like, one small instance. 10 You know, like, New York State has one of the 11 highest veteran suicide rates, as well as 12 active-duty suicide rates, in the country. And 13 I don't think people are taking that into 14 consideration. 15 And, also, New York State, because of the 16 Mountain Division at Fort Drum, you know, we have 17 these guys going on "the gauntlet," they call it; 18 those back-to-back tours. It's five tours, and then 19 you're done, for good. 20 But, a lot of them come home maimed. And we 21 have a huge population of limb-loss, like -- 22 limb-loss survivors here in New York State that 23 could benefit from this bill; although, limb loss 24 and TBI haven't been articulated on it yet. 25 SENATOR SAVINO: Thank you. 1 Do you have any questions, Senator Maziarz? 2 SENATOR MAZIARZ: No. 3 SENATOR SAVINO: Senator Valesky? 4 SENATOR VALESKY: No. 5 SENATOR SAVINO: Thank you. 6 SENATOR MAZIARZ: Thank you. 7 Thank you for your service. 8 [Applause.] 9 SENATOR SAVINO: Next we are going to hear -- 10 Am I on? 11 I'm on. 12 Next we're going to hear from some parents 13 who brought -- come here with their children: 14 Kate Hintz, Missy Miller, and 15 Polly Vander Woude [ph.]. 16 [Applause.] 17 SENATOR SAVINO: We only have the room until 18 1:00. 19 SENATOR MAZIARZ: At 1:00, they're going to 20 turn the heat on, so, we have to leave. 21 [Laughter.] 22 SENATOR SAVINO: Can we do something about 23 that? It's freezing in here. 24 MISSY MILLER: Hi, I'm actually -- I'm 25 Missy Miller. I'm going to go first because I have 1 another meeting. Sorry. 2 Hi, I'm Missy Miller. I live in 3 Atlantic Beach, New York. 4 I'm here today because I am urging whoever is 5 still not supporting this Compassionate Care Act to 6 please pass this. 7 I have a son named Oliver, who's sitting 8 right over there, and he is the reason that this is 9 so important to me. 10 Oliver had a stroke in utero, and as a 11 result, he has a devastating brain injury. This 12 brain injury has resulted in many medical 13 complexities, among them, a severe seizure disorder 14 that has not responded to any pharmaceuticals or 15 traditional treatments. 16 He has endured many overwhelming illnesses, 17 hospitalizations, and setbacks in his young life. 18 He has struggled to overcome and emerge from 19 odds that were stacked against him. 20 Imagine trying to think, trying to focus on 21 something, trying to sit up or stand, while there is 22 an almost constant burst of seizure activity going 23 on in your brain. 24 He has had to fight all his life, often in a 25 haze of drugs used to try and control these 1 seizures. 2 When not in a postictal or drugged-up state, 3 Oliver is very funny and silly and happy. He is 4 loving and affectionate and accepting of everyone 5 that he meets. 6 In his world, there is no such thing as 7 judgment or negativity. His world is full of 8 dedicated loving family and friends who believe in 9 him. He is the bravest, happiest person I know. 10 But, we are losing him, day by day, seizure 11 by seizure. 12 Each seizure causes anxiety. 13 I worry, which is the seizure that has the 14 potential to take him from us? 15 Will this be the one that starts the cluster 16 of status seizures that do not stop? 17 Oliver has lost milestones in the past few 18 years. He's lost skills because of these constant 19 seizures. 20 After years of struggling and fighting to be 21 able to pull himself up to stand, he can no longer 22 do this. Even sitting has become hard for him. He 23 often gets slammed down by drop seizures. 24 Just this past weekend, he had a seizure 25 while in the bath tub and slammed his head. It took 1 myself and my 19-year-old daughter to try and keep 2 his convulsing body away from the sides of the tub 3 and to just keep his head above the water. 4 None of the medications, surgeries, or 5 treatments that we have tried have helped. 6 He is 14, and he is addicted to FDA-approved 7 and doctor-prescribed benzodiazepines and 8 barbiturates that don't work. 9 There is a strain of medical marijuana that 10 can help him, which we all know about, but we can't 11 have access to it because it's not legal here in 12 New York yet, and the Governor's very limited pilot 13 program will not provide the help that my son needs. 14 Passing the Compassionate Care Act in 15 New York will allow us to use this medical marijuana 16 to stop Oliver's seizures. It may very well save 17 his life. 18 Please look at my innocent child suffering 19 needlessly, and be the one that decides to make a 20 difference. 21 This should be a medical decision, not a 22 political one. 23 My son's doctors are fully in agreement that 24 he should be allowed access to medical marijuana. 25 Why does any politician have the power to 1 stand in the way of that? 2 Oliver doesn't have the time to wait for this 3 to be held up any longer. 4 [Applause.] 5 SENATOR SAVINO: Thank you. 6 SENATOR MAZIARZ: We may have questions, so 7 why don't you stay. 8 If you don't mind. I mean, if you have to go 9 back, go. 10 MISSY MILLER: I have an appointment. 11 SENATOR MAZIARZ: Okay. 12 SENATOR SAVINO: Are you going to lobby a 13 member? More important, go convince them. 14 KATE HINTZ: Hi, my name is Kate Hintz. I'm 15 from North Salem, New York. 16 I'm here today with my daughter Morgan, and 17 her nurse Carol. 18 I have to apologize in advance, as I'm very 19 emotional today, having, last night, just watched 20 that CNN documentary. It featured so many families 21 that are just like mine. 22 I'm heavily burdened with the choice my 23 husband and I have made. 24 We have decided not to move and not to 25 relocate. We have decided not to obtain medical 1 cannabis or attempt to obtain it illegally. 2 Instead, we have decided to stay and make 3 every effort to raise awareness about this 4 remarkable plant, and to fight to get this bill 5 passed here in New York. 6 We are taxpayers, we are homeowners. We 7 participate in government, we participate in our 8 community. 9 We have the absolute luxury to provide Morgan 10 with the best medical care available. 11 If we are not happy with a hospital, we 12 switch hospitals. 13 If we are not happy with our doctor, we seek 14 a second opinion. 15 Now, I'm aware that this is not the case for 16 most residents of New York, but the reason I mention 17 it is because, even with this luxury of choice and 18 option for Morgan's health care, it has failed to be 19 enough for her. 20 At only 9 weeks old, Morgan experienced her 21 first seizure. Luckily, we do live in one of the 22 best areas to receive state-of-the-art pediatric 23 care. 24 We headed straight to the hospital and hoped 25 for the best. 1 Morgan had seizure after seizure. Days turns 2 into weeks, and then into months. We tried drug 3 after drug, and nothing helped. 4 Finally, after numerous tests, we got a 5 diagnosis. Morgan has Dravet syndrome. 6 Dravet syndrome is a rare and catastrophic 7 form of epilepsy for which there is no cure. 8 Part of the reason why Dravet syndrome is 9 such an ominous diagnosis is because it is highly 10 resistant to medications, and usually requires a 11 cocktail of at least two to four separate 12 medications for any hope of seizure control. 13 I am not embellishing when I say that doctors 14 have tried almost every medication and treatment 15 available. 16 In her short 3-year life, Morgan has been 17 prescribed over 10 different medications in an 18 attempt to control her seizures. These include 19 phenobarbital, Keppra, Trileptal, Lamictal, 20 Depakote, Klonopin, Topamax, chloral hydrate, as 21 well as high dose of steroids. 22 Many of these are classified as narcotics and 23 are highly addictive, with endless side effects. 24 None of these medications are FDA-approved 25 for use in infants or young children, and, none of 1 these medications have worked. 2 The list of side effects is staggering. 3 Now at 3 years old, Morgan depends on a 4 feeding tube because she cannot eat by mouth. She 5 cannot sit or stand independently. She does not 6 speak. She cannot pick up a toy. 7 Even worse, she has been diagnosed with 8 kidney stones at only 16 months old. 9 At 20 months old, she was diagnosed with 10 ulcerative colitis. 11 And earlier this year, we noticed strange 12 physical changes happening to her body, and were 13 told that she has begun precocious, or early 14 puberty. 15 The line between side effects from 16 medications and her actual diagnosis is completely 17 blurred. We have no clue what is a result of 18 medications and what is a result of her diagnosis. 19 She requires a nursing level of care as 20 defined by New York State. She takes a cocktail of 21 11 medications and supplements 3 times a day; yet, 22 at her best, Morgan has only gone 4 weeks 23 seizure-free. 24 Each seizure causes more and more damage to 25 her brain, her heart, and her body. 1 Two weeks ago, Morgan experienced her first 2 full-body convulsive tonic-clonic seizure lasting 3 approximately 5 minutes. 4 Just when we think things cannot get any 5 worse, they continue to do so. 6 For the most part, Morgan does not leave our 7 home. All services are provided to her by the 8 wonderful State of New York, including numerous 9 therapies via early intervention, and private 10 nursing via a care-at-home medical waiver. 11 Even with this care in place, I would equate 12 her quality of life to that of someone living in 13 palliative or hospice care. 14 This is no way for a 3-year-old to live. 15 Waiting for an inevitable seizure to occur 16 puts a heavy burden on myself, my husband, and 17 I regret to say we are no longer the once vibrant 18 New Yorkers we used to be. 19 My reason for being here today is simple: 20 We have come too far this year for this bill 21 not to pass. 22 I cannot continue to watch my child suffer. 23 I'm tired of bearing my personal emotional struggles 24 to people who refuse to educate themselves; instead, 25 applying blanket rationalizations about substance 1 abuse and smoking. 2 This does not apply to suffering New Yorkers 3 with medical conditions. 4 Some Senators have told myself and other 5 mothers here today that they support my daughter, 6 and would do anything to help them; yet, they will 7 not support this bill. 8 These two statements simply cannot co-exist. 9 If you support our kids and you care about 10 the sick people in New York, you must support the 11 Compassionate Care Act. 12 It is time for our government to do the right 13 thing: to step forward, and to get this bill passed. 14 Thank you. 15 [Applause.] 16 POLLY VANDERWOUDE: Hello. 17 Senator Savino, and other Senators, thank you 18 so much for the opportunity to be here today. 19 My name is Polly VanderWoude. I live in 20 Larchmont, New York. 21 I'm here today with my 3 1/2-year-old 22 daughter Olivia, and her nurse Andrea, in support of 23 the Compassionate Care Act. 24 My daughter Olivia has something called 25 "Aicardi syndrome." There are less than 1 1,000 diagnosed cases of this rare genetic disorder 2 in the United States. It's something we had never 3 heard of until it became the most life-changing 4 two words in all of our lives. 5 At 2 months old, Olivia had her very first 6 seizure. We weren't sure what it was at the time, 7 but we knew enough to get to the hospital very 8 quickly. 9 The next 24 hours were a blur of tests and 10 doctors and lab work. 11 When we saw Olivia's brain MRI, you did not 12 need an M.D. to know that something was very 13 seriously wrong. 14 There were large gaps where brain tissue 15 should have been. And she is completely missing her 16 corpus callosum which connects the left and right 17 sides of her body. 18 She -- we learned that her eyes had scarring 19 on each retina and she would be visually impaired, 20 globally delayed, and likely suffer seizures every 21 day. 22 Children with Aicardi syndrome have an 23 average lifespan of 8 years old. 24 She is, and always will be, dependent on us 25 and other caregivers to perform even the most basic 1 daily tasks. 2 In other words, we were in the midst of every 3 parent's worst nightmare. 4 In the early days of the diagnosis, such as 5 Aicardi, your grief and agony over the loss of the 6 child you hoped to have balances out with hope in 7 modern medicine, that there will would be some 8 medication readily available to treat the God-awful 9 seizures that will not stop, and, somehow, your 10 child will end up on the higher-functioning scale of 11 a spectrum diagnosis. 12 I write about Olivia -- my experiences with 13 Olivia on a blog, and one of my early posts was 14 around Christmas, her first Christmas, in 2010. 15 I wrote that our greatest wish for Olivia was 16 to smile. 17 "Praying for smiles" became a common 18 catchphrase amongst our friends and family. 19 I believed it was only around the corner, 20 that something expected of a 6-week-old would be 21 within my daughter's cognitive and physical 22 capabilities; however, seizures and seizure 23 medications have stolen our daughter's personality 24 and development from us. 25 At the time when most parents experience this 1 precious first, we were applying our baby girl with 2 the best medicine science had to offer. 3 In her short life, we have tried 4 10 mind-numbing medications, a restrictive medical 5 diet, and she has an implanted electronic pacemaker 6 for the brain, a vagus nerve stimulator. 7 Even still, the seizures have been 8 relentless. 9 Since she was diagnosed at 2 months old, she 10 has had no more than 14 days without a seizure, not 11 consecutive. 12 It's heartbreaking and shocking to me to even 13 say that. 14 Currently, she's having 3 to 5 clusters of 15 seizures every day, and they last anywhere from 5 to 16 15-plus minutes. It amounts to approximately an 17 hour or more of seizures every day. 18 In addition, the numerous medications that 19 she has tried come with the debilitating side 20 effects that have negatively impacted her health. 21 These include risk of permanent vision loss, 22 permanent liver damage, decreased muscle tone, 23 increased risk of breathing abnormalities, and sleep 24 apnea. 25 Olivia now takes medication because she 1 cannot swallow her own saliva. She's lost the 2 ability to eat by mouth, and is 100 percent fed via 3 a G-tube directly into her stomach. 4 Last year, she was admitted to the hospital 5 14 times because her body was too weak to fight off 6 the common cold. 7 We are realistic enough to know, that while 8 we can't change her underlying brain structure and 9 the limitations that puts on her abilities, but we 10 believe very strongly that a life free from the 11 daily toll of seizures could and should be possible. 12 This would be a huge improvement in Olivia's 13 quality of life, and we believe that that would open 14 up the possibility for more development. 15 Early on, my husband and I said, that helping 16 Olivia realize her full potential and giving her the 17 best life we could would be our goal. 18 Ironically, to do this, we moved to the state 19 of New York in 2012. We were living in Chicago at 20 the time, far away from family, and we wanted to be 21 closer to our family. 22 It was very important to us to be able to be 23 in driving distance of cousins and relatives, to 24 take her on vacations, because flying with her, 25 frankly, is extremely difficult. 1 So we chose New York as our home state 2 because of the awesome services that the State 3 offers to people like my daughter. 4 The quality of her life has improved 5 tremendously while being here. 6 She's around people she loves. 7 We have nursing services and support that we 8 would never have gotten in the state of Illinois. 9 She goes to an amazing special-needs school 10 that she loves. It's the joy in her life. 11 And, we are in the process -- we bought a 12 home, and we are in the process of remodeling it 13 right now to make it fully handicapped-accessible 14 for her. 15 I cannot explain to you the guilt I feel 16 because I cannot physically go through another move. 17 I can't take her to Colorado. 18 I've spent the last year and a half 19 rearranging our whole life: the doctors, the 20 therapists, all of the services, are carefully put 21 in place and thought out. 22 Olivia's doctor does support this. She 23 would, if available, work in concert with us to give 24 her medical marijuana. She would love to see what 25 that would do for our daughter. 1 Like other parents here today, I've been in 2 contact with families with the exact same diagnosis 3 as my daughter. They're in legal states and this is 4 working for them. 5 You know, through their bravery, and 6 pioneering this novel treatment for epilepsy, it 7 gives me hope, that I have not had in a very long 8 time, that this will offer Olivia some improvement. 9 And while I come here today advocating for 10 Olivia, I also come here today advocating for all 11 the families touched by epilepsy, and especially 12 those children who have yet to have their first 13 seizure; the child whose epilepsy diagnosis awaits 14 them and their families. 15 Today, medical marijuana is being sought as a 16 treatment of last resort; however, in the near 17 future, I hope the promise of medical marijuana for 18 epilepsy is realized and it can be started much 19 earlier in that child's diagnosis. 20 These children will not have to cycle through 21 the countless medications to get freedom from 22 seizures, and their parents and families will have 23 the joy of never wondering what would their child be 24 like if it were not for the damage the seizures 25 caused to their child's developing brain. 1 New York is, at its core, a progressive state 2 on so many issues. 3 It's time for the Senate to listen to its 4 constituents and bring the Compassionate Care Act to 5 the floor to vote. 6 Children like Olivia do not have time for 7 politics. They are counting on you and your fellow 8 Senators to hear us here today, and take the 9 necessary action to bring this medical therapy to a 10 reality as quickly as possible. 11 My hope is that Olivia can enjoy more than 12 two weeks of her life free from devastating impact 13 of seizures, and I still hope and pray for smiles 14 for my daughter. 15 Thank you. 16 [Applause.] 17 Kathy Bent. 18 KATHY ANABO [ph.]: I first have to 19 apologize, because it was warm yesterday, so in 20 Syracuse, and my allergies kicked in. 21 So, I am so sorry. 22 Since we've been here, we've had 23 three seizures. And I say "we" because it is a 24 family affair. It takes mothers and fathers and 25 caregivers to wave the magnet, as Kaylee [ph.] has 1 VNS, or whatever needs to be done to care for 2 children. 3 So with that said: 4 My name is really Kathy Anabo [ph.]. I am a 5 devoted mother, loving to four beautiful children. 6 Kaylee, now 11, is the reason that I am here 7 today. 8 She, too, is born with Aicardi, so, you have 9 two of us sitting right here. 10 Anyway, I could have never imagined that such 11 exhilaration could have so quickly turned into 12 heart-wrenching pain. We would soon learn that 13 Aicardi is a rare neurological disorder, with 14 approximately 900 cases reported in the 15 United States. 16 It is a defect on the X chromosome, and has, 17 thus far, have been observed in females with, the 18 exception of males who have Klinefelter syndrome. 19 It involves a severe seizure disorder, brain 20 anomalies, abnormalities of the eyes, and many other 21 health-related conditions. 22 As I struggle with my words, and as 23 I struggle to find the right words, I do know that 24 what I can tell you, and that what has ruled our 25 life over the last 11 years, controlled our days, 1 taken away Kaylee's growing years, and until now, 2 had shattered any and all hope for a normal life: 3 seizures. 4 "Seizures." 5 Allow me to share Kaylee's story with you. 6 She was born on August 20, 2002. We welcomed 7 a beautiful baby girl into our lives. 8 As the diagnosis quickly followed, we were 9 told that Kaylee would not live past one. 10 As tears flowed down my face and I held her 11 in my arms, I knew that there was nothing wrong with 12 her and that everything was right. 13 You see, Kaylee is our angel, she was sent 14 from heaven. Her soul is perfect. 15 As we questioned the many medical conditions 16 that would soon arise, we did learn that Kaylee is 17 on the severe side of the syndrome. 18 Characterized by the agenesis of the 19 corpus callosum, Kaylee has complete absence, which 20 means that the band of white matter connecting the 21 two hemispheres in the brain have failed to develop. 22 She has intractable seizures that range in 23 form, from generalized, to complex partial, and are 24 a mix of heart-wrenching grand mal, myoclonic, 25 tonic-clonic, atonic, and absence. 1 If that's not enough, she has 2 Nissen fundoplication with a G-tube. She has a 3 left-eye coloboma, total retinal lacunae, that is 4 quite specific to the disorder. And morning glory 5 syndrome, which is an optic-disc cortex anomaly. 6 Many doctor appointments brought many more 7 disappointments. 8 Drug after drug, month after month, risking 9 one bad side effect for another, the only thing that 10 remained constant were her seizures, and hundreds of 11 them. 12 She regressed in all areas, along with her 13 ability to sit, eat, laugh, and engage in her world. 14 Walking and talking and any day-to-day task became 15 far out of reach. 16 Like many moms and dads, I've watched 17 thousands and thousands of her seizures. 18 I have felt electrical charges ravage through 19 her tiny body. And as I hold her and tell her 20 "It's going to be okay," in the end, I'm only left 21 with, What can I do to help my child? 22 Until now, it all felt hopeless, like there 23 were no answers. 24 I realized that, sometimes, by losing a 25 battle, you find a new way to win a war. 1 Like so many, we have battled 20 to 2 30 seizure meds, homeopathic and holistic remedies, 3 the ketogenic diet, the vagus nerve stimulator, 4 cranial psychotherapies, and, of course, prayer. 5 Sad to say, in this battle no one wins, and 6 it's only a matter of time before seizure could take 7 her life. 8 As elected officials, you are all in 9 positions to serve. 10 I thank you for the many endeavors you endure 11 on a daily basis, the tough decisions that you make, 12 and, at oftentimes, the very thankless task that you 13 complete. 14 I ask you to listen to one of the greatest 15 needs that we have: it's the need to live. 16 As I quote Dr. Gupta: "We all need to be 17 reminded that a true and productive scientific 18 journey involves a willingness to let go of 19 established notions and get to the truth." 20 Time is of the essence. We can't afford to 21 wait another day, let alone another year. 22 We need the Compassionate Care Act now. 23 I don't want to waste my time or yours on the 24 many medical uses of the cannabis plant, as I know 25 you know; or the medical research that was performed 1 in the late nineteenth century, or the benefits to 2 our medical, agricultural, textile, and industrial 3 industries. 4 I do, however, want to remind you that access 5 to effective medicine and quality health care are 6 listed as fundamental rights in the United Nations 7 Universal Declaration of Human Rights. 8 Medical use is specifically allowed by the 9 single convention treaty. 10 It is cruel to deny sick and dying people 11 this effective medicine, and inhumane to punish 12 patients whose very quality of life depends on 13 access to cannabis. 14 With that said, right here, right now, 15 Americans across -- or, I'm sorry -- patients across 16 America are still victims of government 17 law-enforcement officials who are practicing 18 medicine without a license. 19 A recent article -- oh, I'm sorry. I don't 20 want to talk about Charlotte's Web, because you guys 21 already know about that. 22 Sorry. 23 There's a lot of misinformation and emotion 24 on this issue; however, in the end, stories of 25 promise have emerged. 1 This is a state filled with loving, caring 2 parents who want what's best for their children. 3 Shouldn't they have the opportunity to decide 4 if medical marijuana, specifically, Charlotte's Web, 5 is the right choice for them? 6 If you were that mother or father, wouldn't 7 you want every option available? 8 As you hold your seizing child, I strongly 9 believe that you, too, would jump every puddle, 10 hurdle every river, or sail every ocean, instead of 11 wiping every tear that falls down your face, as you 12 watch and hold helplessly your child, and pray that 13 it's not going to be their last breath. 14 Thank you for the opportunity to be here 15 today. 16 I trust and believe, as you continue your 17 talks, meet with the people who have elected you 18 into office, listen carefully to the many stories 19 where hope is renewed, that you will do what is best 20 for New York. 21 But I promise you that if our voices are 22 heard today, your heart will rejoice, knowing, you 23 may have saved one more child from a sudden 24 epileptic death. 25 [Applause.] 1 SENATOR SAVINO: Thank you. 2 Next we're going to hear from Joe Fontana, 3 the legislative director from UFCW Local 338, and, 4 Ed Pichardo, on behalf of the Worker's Compensation 5 Alliance. 6 [Applause.] 7 UNKNOWN SPEAKER: Before we start: Folks, we 8 are running a little bit late on time. We have 9 limited time for the room. 10 We definitely want to hear from everybody. 11 If you could maybe summarize your statements 12 to as little as possible, I think that would help 13 get us out of here reasonably timely. 14 Thanks. 15 SENATOR HASSELL-THOMPSON: And I just have 16 one quick question. 17 Is Jake Schrader still here? 18 JAKE SCHRADER: Yes. 19 SENATOR HASSELL-THOMPSON: Oh, okay. 20 And, Jason Pinsky? 21 SENATOR SAVINO: No, he had to leave. 22 SENATOR HASSELL-THOMPSON: I wanted his 23 speech, 'cause -- 24 SENATOR SAVINO: We asked for a copy of the 25 PowerPoint that he had. 1 SENATOR HASSELL-THOMPSON: Right, okay. 2 And I apologize, but I've got constituents 3 who are up here on education, so they keep calling 4 me outside to meet them, 'cause they came all the 5 way by bus this morning. 6 And just to be -- to spread myself around, 7 I had to jump out to talk with them for a few 8 moments. 9 And then, in 10 minutes, I've got conference. 10 So, I want to try to hear as many of the 11 speakers as I can, but know that part of the reason 12 those of us who are here, are here to support this 13 effort. And we just need to be well-educated and 14 well-informed, because we're going to get the 15 questions and you're not going to be here to answer 16 them for us. 17 And so, when we debate, these are the kinds 18 of questions and things that we anticipate that we 19 will get on the floor. 20 So I just appreciate your indulgence with us. 21 Thank you. 22 JOSEPH FONTANA: Thank you, Senators. 23 My name is Joe Fontana. I'm the political 24 director for Local 338, RWDSU. 25 The RWDSU is part of the UFCW. It's the 1 largest council of the UFCW. And our local 2 represents over 19,000 members in the retail food 3 industry, drug/pharmaceutical store industry, and 4 other service industries in New York. 5 I'll try to shorten this up as best I can. 6 I'm just here to basically say: Local 338 7 proudly supports the Compassionate Care Act. We're 8 proud to be part of this effort. 9 The Compassionate Care Act will, both, 10 provide medical care for citizens in our state, but 11 it will also provide a positive economic impact. 12 We've head about the benefits of medical 13 marijuana, and the benefits really can't be argued, 14 so I'm not going to get into that. 15 But this legislation will create a highly 16 regulated industry that will create thousands of 17 middle-class jobs across this region -- across all 18 regions of our state. These jobs will involve 19 production, transportation, retail sales, of medical 20 marijuana. 21 Not only will this industry create thousands 22 of jobs, but it will also provide state and local 23 governments with millions of dollars in new tax 24 revenue. 25 As we continue this year's budget 1 negotiations, I know you are aware of how important 2 these funds can be to maintain and enhance the 3 services offered across our state. 4 The UFCW, nationally, has organized over 5 4,000 medical-marijuana workers in the 6 United States. These workers are well-paid, receive 7 health benefits, and a pension benefit. They have 8 the protections of collective-bargaining agreement. 9 New York has spent hundreds of millions of 10 dollars to attract and retain businesses in our 11 state; and the passage of this legislation will do 12 just that. 13 I've had the opportunity travel to Colorado, 14 and met with medical-marijuana workers who are 15 members of the UFCW. These workers are no different 16 than any other workers in production and retail 17 facilities that we represent in traditional 18 industries. They want a middle-class job that can 19 provide them -- so that they can provide for 20 themselves and their families. 21 Passage of this legislation will improve 22 health care for patients and improve the quality of 23 life for their families, while creating thousands of 24 middle-class jobs; jobs that will allow people the 25 lifestyle that New Yorkers deserve. 1 The new businesses that this legislation will 2 create, the products that those businesses will 3 produce, and the workers who are employed by them 4 will, together, produce millions in local and state 5 revenues. 6 It's time New York joins with 20 other states 7 in legalizing medical marijuana. 8 I just summarized, you know, for the sake of 9 time, but I did want to say, this is not just about 10 jobs. 11 The priority for Local 338 is the patients. 12 I don't know, I know Senator Savino knew 13 Steve Peznick [ph.], who was the predecessor in my 14 job. 15 Steve passed away last year from pancreatic 16 cancer. He was diagnosed, and within nine months he 17 passed away. He went from 220 pounds, down to, 18 I think he was 90 pounds when he passed. 19 And Steve -- you know, I remember Steve 20 telling me, about halfway through the struggle, 21 Steve said to me, he said: Joe, the biggest problem 22 is, I can't keep my strength up, I can't eat. 23 And, you know, I wonder if, you know, Steve 24 would still be fighting the fight if he was allowed 25 to eat and had the energy, and he was able to fight 1 the battle from a stronger base, having the ability 2 to eat. 3 And the one thing we know is, this medical 4 marijuana will allow patients to go through their 5 chemo treatments, and allows them to eat and keep up 6 their strength. 7 And that's something, you know, that sticks 8 with me, Steve saying that to me. And I'm just 9 wondering how much that drug would have helped 10 Steve. 11 So, thank you. 12 [Applause.] 13 EDWARD PICHARDO [ph.]: Good afternoon. 14 My name is Edward Pichardo. I'm here in 15 place of my colleague Richard Winsten [ph.] 16 We're here on behalf of the 17 Worker's Compensation Alliance. It's a statewide 18 coalition that protects the rights of injured 19 workers. 20 I'd simply just like to say that, the WCA 21 supports the Compassionate Care Act, urges its 22 passage, and its ultimate enactment. 23 Thank you. 24 SENATOR SAVINO: Thank you. 25 Short and sweet, thank you. 1 [Applause.] 2 SENATOR SAVINO: Do either of you have any 3 questions? 4 SENATOR THOMPSON: No, just a comment. 5 It's good to see you again, Ed. 6 EDWARD PICHARDO [ph.]: Yeah, nice to see 7 you, Senator. 8 SENATOR HASSELL-THOMPSON: We've worked 9 together on legislation in the past, and so I trust 10 all that experience will serve you well, in terms of 11 helping us to frame what's -- you know, we've talked 12 about the accessibility today, a little bit, to 13 patients, but, we also want to be sure that workers 14 receive appropriate accommodations in the workplace. 15 And how do you -- how do you define 16 "middle-class jobs"? 17 You keep -- I keep hearing the term 18 "middle-class jobs," as opposed to, what? 19 JOSEPH FONTANA: Well, you know, there's a 20 trend in New York. You know, job creation, you 21 know, starts with, you know, any job is considered 22 job creation. 23 Well, we don't look at it like that. 24 You know, low-wage, minimum-wage, jobs are 25 not middle-class jobs. 1 SENATOR HASSELL-THOMPSON: Okay, so you're -- 2 JOSEPH FONTANA: And, I don't have a 3 technical definition for you, but the truth is, the 4 jobs that the UFCW is providing are jobs where folks 5 are going to be able to afford a good living, 6 provide a better future for their children, have 7 pension benefits, have medical benefits. 8 And, you know, I can't put a dollar value to 9 it, but it's nowhere near minimum-wage jobs. 10 SENATOR SAVINO: Thank you. 11 SENATOR HASSELL-THOMPSON: Thank you. 12 [Applause.] 13 SENATOR SAVINO: Next we are going to hear 14 from Liz Dellureficio [ph.], Hillary Savoie [ph.], 15 and the Russo family. 16 How do you say your last name? 17 LIZ DELLEREFICIO: Dellureficio. 18 SENATOR SAVINO: Dellureficio. 19 LIZ DELLEREFICIO: Yeah. 20 Thank you so much, Senator Savino, and -- 21 SENATOR HASSELL-THOMPSON: And you're 22 Italian? 23 LIZ DELLEREFICIO: My husband's Italian. I'm 24 Jewish; Schwartz. 25 Thank you so much holding this, and allowing 1 us the possibility to speak. 2 I'm going to try to edit what I wrote. 3 I'm here to support my -- I'm here for my 4 daughter who is 17, and her name is Nika [ph.] 5 She began to get epilepsy when she was 6 5 months old. And, she's is 17, she still has 7 epilepsy. She can have as many as 800 seizures a 8 day. 9 That means one part of her body or not is 10 usually actively shaking. Those are the smaller 11 seizures. 12 She remains aware, and smiling and happy and 13 interactive while she's having these smaller 14 seizures that are not under any kind of control. 15 One time a week she has a large grand-mal 16 seizure, also known as a tonic-clonic, where her 17 whole body will shake violently for about 18 two minutes. 19 You wouldn't think that those two minutes 20 would create such a havoc for her life, but, they 21 do, because the recovery period from them, she needs 22 to sleep the entire day afterwards, and misses 23 school for the next two days. Takes it her three 24 days to recover from a grand-mal seizure, and this 25 happens week after week after week. 1 You know, you see around you that many 2 families are in the same position, and we've all 3 tried many medicines. She's been on so many. And 4 she's on, you know, four right now. 5 She takes 25 pills of medicines a day. 6 She's a beautiful, wonderful person. She's 7 very interactive. She uses an augmentative 8 communicative device to speak, where she looks at it 9 and it goes off, because the seizures stole her 10 speaking. 11 So, we're hopeful for medical marijuana. 12 It comes in various forms. You've probably 13 heard of Charlotte's Web. It has such a small 14 amount of THC, so there's no high. It comes in an 15 oil. You don't smoke it. And it's not a gateway 16 drug because this is medical marijuana. 17 We are not for legal -- I am not for 18 legalizing marijuana. This is medical marijuana for 19 people who need it. 20 And this can -- this has been shown to stop 21 seizures through the evidence of several hundred 22 people who are in Colorado. 23 I don't want to have to be forced to move. 24 I have job. I don't think I can replace my job. 25 And, I just want to sort of end by saying 1 that, the Epilepsy Foundation -- I want the quote 2 the Epilepsy Foundation. 3 They support the rights of patients and 4 families living with seizures and epilepsy to access 5 physician-directed care, including medical 6 marijuana. 7 Nothing should stand in the way of patients 8 gaining access to potentially lifesaving treatment. 9 If a patient and their health-care 10 professional feel that the potential benefits of 11 medical marijuana for uncontrolled epilepsy outweigh 12 the risks, then families need to have that legal 13 option now, not in 5 years or 10 years. 14 For people living with severe, uncontrolled 15 epilepsy, time is not on their side. 16 SENATOR SAVINO: Thank you, Liz. 17 Hillary. 18 HILLARY SAVOIE [ph.]: Hi. Thank you very 19 much for having me here today. 20 My name is Hillary Savoie. I am the mother 21 of a really spectacularly lovely 3-year-old daughter 22 who is adorable and funny. 23 She also has a long list of medical 24 diagnoses, including severe hypertonia. She has 25 failure to thrive. She's also fed with a G-tube, 1 like many of the children you've heard from today. 2 And, she has a diagnosis of a very rare form 3 of intractable epilepsy known as 4 "PCDH19 female-limited epilepsy." There are about 5 200 diagnosed cases in the world, currently, with 6 this disorder. 7 It causes severe drug-resistant clustering 8 seizures that have a tendency to be resistant to 9 drugs. And if they are reactive to drugs, 10 eventually, to stop being reactive to whatever drug 11 treatment the child's on. 12 Ezmay [ph.] started having seizures at 13 10 months. At her worst, she had approximately 14 20 clear, obvious seizures in a day over a 24-hour 15 period. She would have a week relief, and then she 16 would be back to seizing again. 17 She also has a number of tiny, little 18 seizures that we don't bother counting because 19 they're probably in the thousands. 20 I'm not sure how many of you have seen 21 someone have a seizure, especially a child, but 22 I can tell you that I've seen thousands. And every 23 time my child seizes, and she turns blue and she 24 shakes, it doesn't get any easier no matter how many 25 times you see it. 1 And I can tell you that I would do anything 2 to make her seizures stop, and give her an option 3 for a healthy and productive life. 4 Treatment of epilepsy is a little bit like a 5 toolbox. There's a bunch of drugs and they throw 6 them at you, and you hope. 7 You titrate the drug up, and you hope and you 8 hope and you hope. 9 In Ezmay's case, she's had several drugs that 10 didn't do anything to stop her seizures. She's had 11 several drugs that made her violently ill. 12 She's very tiny, she's failure to thrive. 13 And, one drug caused her to lose a pound in a week 14 and a half. She was 17 pounds at the time. 15 They have turned her into a zombie. 16 They have taken my child away for periods of 17 time. And some of them have worked, and then 18 they've stopped working. 19 We're very fortunate right now. We're on a 20 drug that has taken her seizures down to once a 21 month, to once every three months sometimes. 22 Although, like Morgan's mom was saying, my 23 daughter had her first tonic-clonic seizure about 24 three weeks ago. 25 So the drugs are helping, but they're not 1 stopping all of the seizures. 2 And to give you an idea, the drug that she's 3 on is a benzodiazepine. She's on a dose that is as 4 high as we can possibly go for her age and weight. 5 To give you an idea of how high that is, 6 I know other children who've been on this drug, who 7 weigh 120 pounds, and weren't even half of her dose. 8 And it still doesn't control her seizures. 9 And, we also know that, all things 10 considered, it's probably going to stop working at 11 some point. 12 And I can tell you that, as a mom, I'm doing 13 everything that I possibly can to help my daughter. 14 I am seeking the best medical care that 15 I possibly can. 16 I'm willing to drive her three hours once a 17 month to seek the best possible medical care that 18 I can get for her. 19 I've started a foundation to raise money for 20 research into her disorder, since it's drastically 21 underfunded. 22 But I can't -- I can't legalize this option 23 for her. Only you guys can do that. 24 And, you know, I've lived in New York State 25 almost all of my life. I love this state. I own a 1 home. My husband has a fantastic job here. 2 I brought him from abroad to live in our beautiful 3 state. 4 I started my foundation here. I received my 5 Ph.D. here. 6 I want to stay in New York, we want to stay 7 in New York, my family is here. But, I will do 8 anything that I need to do to keep my daughter safe. 9 And if that means that we have to go to 10 another state to pursue all available options, we 11 would. 12 And I'd really urge you to not put parents 13 like us in that kind of a situation. 14 So, thank you. 15 SENATOR SAVINO: Thank you, Hillary. 16 Mr. Russo. 17 MIKE RUSSO: [Microphone turned off.] 18 Hi, my name is Mike Russo. 19 This is my wife, Felicia; my daughter, 20 Antonella [ph.]; and this is my son, Anthony. 21 We've lived in New York State our whole 22 lives. 23 Anthony, at 8 weeks old, started having 24 seizures. We took him to the hospital, and we found 25 out, through EGs, that he was having over a 1 thousand seizures a day. 2 We gave him several different medications, 3 just like they went through, injections, and 4 nothing's working. 5 We finally had one medication called "SABRIL" 6 that is controlling his seizures right now, but the 7 side effect of SABRIL is it can cause blindness. 8 But we still give to it him because it 9 outweighs the damages that the seizures give him. 10 But it's going to come to a point where, the 11 longer he uses it, the higher his chance of becoming 12 blind from this. 13 And it just -- we've seen a line about the 14 Colorado medical marijuana. 15 And as a child that has -- he has a gene 16 defect that causes his seizures: the STXBP1 gene. 17 And there's a child that has the same rare 18 disorder, that was probably is in worse shape than 19 Anthony, and they started using the medical 20 marijuana. And, the child now is starting to talk, 21 using his hands, crawling. 22 Now, Anthony, right now, he can't walk, and 23 they told us he's not going to talk. 24 But there is hope through this medical 25 marijuana. 1 And, we're here for Anthony, to help him, but 2 also for the future Anthonys, because the biggest 3 thing is, to get the seizures under control as soon 4 as you can, to stop the damage that it could create. 5 Thank you. 6 SENATOR SAVINO: Anthony is very chatty. 7 I have a feeling that if he gets access to 8 treatment he'll be talking. 9 MIKE RUSSO: Yes, there's hope for Anthony. 10 Yes. Thank you. 11 SENATOR SAVINO: There's hope for all of your 12 children. There really is. 13 Yes. 14 [Applause.] 15 SENATOR SAVINO: Thank you so much. 16 Do you guys have any questions? 17 No? 18 Thank you. 19 We're going to shift slightly again, to some 20 medical professionals. 21 Lisa Kuprian [ph.], who is a registered 22 nurse; 23 Arielle Gerard [ph.], who is a current 24 medical student; 25 Then, Donna Schwier [ph.], who's also a 1 registered nurse, and a patient; 2 And Bishop Michael Clarke who's a faith 3 leader and caregiver. 4 We are getting down to the end now. 5 Arielle? 6 ARIELLE GERARD [ph.]: Yes. 7 SENATOR SAVINO: Donna? 8 DONNA SCHWIER [ph.]: Yes. 9 SENATOR SAVINO: Is Lisa Kuprian here? 10 UNKNOWN SPEAKER: [Unintelligible]. 11 SENATOR SAVINO: Okay. 12 What about Bishop Clarke? 13 No? 14 So it's just you two ladies. 15 DONNA SCHWIER [ph.]: [Microphone not 16 working.] 17 Hello, and thank you, Senator Savino, for all 18 your hard work. 19 And I want to thank the other Senators as 20 well for being here. 21 My name is Donna Schwier. I live out on 22 Long Island. I'm a registered nurse, and, I'm also 23 a patient. 24 In 2010, I was diagnosed with fibromyalgia. 25 And, a lot of people aren't too sure what 1 that means, so I'm just going to talk a little bit 2 about my symptoms, and such. 3 Fibromyalgia is basically characterized by 4 chronic widespread pain throughout the body. 5 There's trigger points. 6 SENATOR SAVINO: I think that one is out. It 7 keeps going out. 8 DONNA SCHWIER [ph.]: Okay, we won't use 9 that. 10 [Working microphone in use.] 11 DONNA SCHWIER [ph.]: Okay, so it's 12 characterized mainly by chronic widespread pain 13 throughout the body, above and below the waist, and 14 on both sides of the body. 15 I can tell you that it's just a miserable 16 condition. 17 I am on disability. I've lost my nursing 18 career to it. 19 I go to pain management. I get injections in 20 my back. And, also, I get prescribed Percocets, and 21 I hate taking them. 22 When I smoke marijuana, it takes off the pain 23 in a different -- completely different way. It 24 relaxes me, relaxes my muscles. It improves my 25 mood. It improves the quality of my life, because, 1 a lot of times, I can't do everything I need to do 2 through the course of the day: Taking care of my 3 apartment. It's hard to go get groceries, to do 4 laundry, and things like that. 5 I think that education is very important for 6 this bill. I think people need to really understand 7 the science behind medical marijuana. 8 And I also think that if you're -- you know, 9 if you're a senator, especially if you're a Senate 10 leader, I think everyone should at least be 11 interested and care about the science, and really 12 learn and be educated about it in order to form an 13 opinion. 14 And, you know, like, to heck with me. Just 15 look at one child in here. "One child." 16 Do we really need another reason after 17 looking at one child? I don't think so. 18 I used to care for children in similar 19 situations, so, it hits me in so many different 20 ways. 21 I'm in pain today, but, I come up to Albany a 22 lot, because I think this is really important, and 23 this bill needs to be passed this year. Not like 24 last year. This needs to go forward. 25 People can't be moving out of the state, 1 risking the kids' lives, and, just, people need a 2 better quality of life. 3 This bill really needs to go forward this 4 year. 5 SENATOR SAVINO: Thank you, Donna. 6 DONNA SCHWIER [ph.]: Thank you so much. 7 SENATOR GRISANTI: Thanks, Donna. 8 [Applause.] 9 SENATOR SAVINO: Arielle. 10 ARIELLE GERARD: Hi, my name is 11 Arielle Gerard. I'm a first-year medical student at 12 Albany Medical College. 13 And just for the record, I speak today as an 14 individual citizen, and not as a representative of 15 Albany Medical Center or Albany Medical College. 16 I graduated from Albany High School, and I've 17 been a New York resident for several years, so, I'm 18 one of your voters. 19 As you all know, Governor Andrew Cuomo 20 recently decided to allow the prescription of 21 medical cannabis under the Olivieri Law of 1980, 22 allowing for experimental use. 23 And while this is a positive step for 24 patients, and increasing research is always 25 important, access to be limited to thousands of 1 New Yorkers who could benefit from the use of 2 medical cannabis. 3 Sorry, I'm trying to move around 'cause 4 I know we're short for time. 5 More than 60 U.S. and international health 6 organizations support the use of medical cannabis 7 under the supervision of a physician. 8 Hundreds of doctors in New York support this 9 legislation. 10 Medical cannabis is supported by 88 to 11 89 percent of New York voters, according to a recent 12 Quinnipiac University Study, so, the support 13 transcends bipartisan divisions. 14 Cannabis is shown, by multiple case studies 15 and controlled scientific experiments, to alleviate 16 the symptoms of many illnesses and disorders, many 17 of which have been described today so I won't repeat 18 those. 19 There's also some research that has shown 20 that, in some cases, it might actually be able to be 21 used to suppress tumor-cell formation, but more 22 research needs to be done. 23 Cannabis has never resulted in death from 24 overdose, unlike other commonly accepted 25 medications, like codeine and morphine. It has a 1 very low risk for dependence. 2 While addiction to cannabis is possible, 3 there is no way of distinguishing psychological 4 versus physiological addiction, and you can be 5 psychologically addicted to basically anything. 6 Cannabis is less addictive than nicotine, 7 alcohol, and caffeine, which I think is a very 8 important thing to note. 9 Withdrawal symptoms from physiological 10 addiction to cannabis are also extremely mild, and 11 involve fatigue and anxiety. 12 It's also important to remember that all 13 medications do have side effects. And the health 14 risks due to cannabis use are extremely minimal, and 15 can be avoided by avoiding severe chronic use, and 16 by using and researching alternative delivery 17 options to smoking, such as oral and vaporization 18 administration methods. 19 According to the Institute of Medicine's 20 1999 Medical Cannabis Report, except for the harms 21 associated with smoking, the adverse effects of 22 marijuana are within the range of effects tolerated 23 for other medications, which is an extremely 24 important point to note. 25 As was discussed earlier, I believe that one 1 of the -- a large issue that everyone's facing is 2 worry that marijuana will lead to use of other drugs 3 through the gateway theory. 4 And, the gateway theory has never actually 5 been supported by science. 6 All research that has shown that it is 7 supported are co-relational studies. And as many 8 people learn in grade-school science classes, 9 co-relation does not imply causation, which, again, 10 is quite important. 11 Cognitive deficits with sensitive tests are 12 noticed with chronic use of cannabis. But, again, 13 these tests are extremely sensitive, and they might 14 not actually be indicative of normal functioning. 15 And, there's no brain atrophy caused by use 16 of cannabis if use begins in adulthood. 17 Oh, sorry. 18 In addition to the gateway-theory idea, the 19 reason why people can become -- come into contact 20 with other drugs is actually through use of 21 underground networks, which is how many people are 22 currently getting medical cannabis. And this 23 increases their chances of coming into contact with 24 other drugs, such as cocaine and heroin. 25 But, under this law, there will be a 1 regulation of the medicine, and we won't have to 2 have this worry. 3 Current medications, such as dronabinol, also 4 known as "Marinol," are currently insufficient. 5 Dronabinol and Marinol are actually only THC, which 6 is only one of the cannabinoids found in cannabis. 7 THC without other cannabinoids can be 8 extremely anxiety-inducing. 9 Other cannabinoids, such as cannabidiol and 10 cannabinol produce many of the health effects of 11 cannabis, and these medicines are also felt -- the 12 effects are felt much more slowly and dosage is very 13 difficult to control. 14 As is explained, the full plant compound is 15 necessary in order to attain the entourage effect 16 which gives the full therapeutic benefit of 17 cannabis. 18 Used in conjunction with other medications, 19 it can actually prevent tolerance and addiction to 20 other medications, as well. 21 Under regulation and supervision by a 22 licensed medical professional, medical-cannabis 23 prescriptions can decrease the pain and suffering of 24 thousands of New Yorkers inexpensively and with 25 minimal detrimental health impact, especially in 1 comparison to other common and accepted treatments. 2 This is a quality-of-life issue, and this a 3 fight for the right to medicine. 4 It is a matter of compassion, patience, 5 medicine, and science; not opinions, personal 6 morals, taboo, or politics. 7 Thank you. 8 SENATOR SAVINO: Thank you, Arielle. 9 We're going to send you over to the 10 Department of Health, and you can advise them. You 11 probably have more information than they do on this 12 subject right now. 13 [Laughter.] 14 ARIELLE GERARD [ph.]: Thank you. 15 SENATOR SAVINO: I'm not kidding about that, 16 either. 17 [Laughter.] 18 SENATOR SAVINO: Our next, and final panel, 19 are -- it's going to be a little bit of a mix. 20 Kira Coburn, Alexander Hardman, Dawn Carney. 21 And, then, when we get down to alternative 22 methods of delivery, we're going to have 23 Andrei Bogolubov, who's the executive vice president 24 of PalliaTech. 25 So, if all of you can come down, we can get 1 everyone in, and we'll get out of here just a little 2 late, but we started a little late. 3 So who do we have? 4 We have Dawn, Kira, and -- is Alexander -- 5 DAWN CARNEY: No, he's not here with us 6 today. 7 SENATOR SAVINO: Okay, then he's not here. 8 And then we have Andrei. 9 Are there any other patients or any other 10 parents that wanted to speak? 11 No? 12 Okay, this is it then. See? 13 Go ahead, Dawn. 14 DAWN CARNEY: Good morning, Senator. 15 SENATOR SAVINO: Now it's afternoon. 16 DAWN CARNEY: Good afternoon. 17 Thank you for having us here today. 18 My name is Dawn Carney. I'm from 19 Mount Vernon, New York. That's in 20 Westchester County. And, I've been diagnosed with 21 AIDS in 1992. 22 And, throughout those years, I call it a 23 positive journey, but it hasn't been so positive, in 24 a sense that, you know, with the medical and -- with 25 the medication, actually, because, in the beginning, 1 we had to go through trial periods. You had to find 2 out what, you know, fits you. 3 And -- but within that, you know, I went 4 through a lot of, say, nausea, headaches, and -- and 5 not wanting to live. I mean, I didn't know if I was 6 going to be able to go through this for the rest of 7 my life. 8 And then it got to the point, in 2004, and 9 I started to suffer, you know, wasting syndrome. 10 And that's when the AIDS, when it can no longer eat 11 at the fatty tissue and start to eat at your 12 muscles, and, you, pretty much, deteriorate. 13 And that's where I was at. 14 And like I said, I was giving up on life, and 15 my mother said to me: Well, you know, there's 16 others. Your family loves you. You're being very 17 selfish. 18 And at that point, I was, like, you know 19 what? Well, let me just give it another shot, you 20 know, as far as with medication and... 21 So then the doctor still had to give me 22 some -- the medical marijuana for me, for my 23 appetite, to help me to eat. Because you still have 24 to have food in your system, you know, with taking 25 all these medications. 1 So I've done that. And I can actually say 2 that I'm a 20-plus year survivor today. It's helped 3 me to live. 4 And, within going through that, you know, I'm 5 very well active, strong advocate in my community. 6 Also a board member with Vocal New York. I sit on a 7 [unintelligible] steering committee; I'm a voting 8 member. 9 In other words, this has given me a life 10 back. 11 And, I advocate on Compassionate Care Act, 12 because there's many people in my community that's 13 newly diagnosed with HIV and AIDS, and that may have 14 to go through the same journey that they wouldn't 15 necessarily have to, if we just passed the bill, the 16 Compassionate Care Act. 17 So I strongly support the Compassionate Care 18 Act. 19 And I hope that you will, and everyone else. 20 Thank you. 21 SENATOR SAVINO: Thank you, Dawn. 22 One question: You said your doctor helped 23 you get -- 24 DAWN CARNEY: I was on Marinol. 25 SENATOR SAVINO: Oh, Marinol. 1 DAWN CARNEY: Right. 2 And I heard the young lady before me, when 3 she was speaking about, you know, the treatment of 4 that. And, you know, because it doesn't work for 5 everyone, you know. 6 It had an effect on me. It did help 7 somewhat, but it's nothing like marijuana, you know. 8 And I have smoked it, and it has helped more 9 so in helping with my appetite. 10 But, I would rather have it medically, as 11 opposed to me going out in the street to get it. 12 And even today there's, sometimes, I still go 13 through ups and downs with the appetite, and -- you 14 know, but it's not as bad as it was. 15 So -- and, I'm doing much better. 16 Thank you. 17 SENATOR SAVINO: Thank you. 18 Thank God for that. Knock on wood. 19 Kira Coburn. 20 KIRA COBURN: Hi, I'm Kira Coburn. I'm 19, 21 and I'm from -- I was born in Upstate New York. 22 I've lived all over the state. And I currently live 23 in Manhattan. 24 And I have a bunch of different conditions: 25 neurological and autoimmune. And, also, one of the 1 most harder to treat ones that I have is called 2 "reflex synthetic dystrophy." 3 And what it is, is a degenerative nerve 4 disease that causes -- it causes different symptoms 5 for different people, but, it causes, for me, 6 chronic pain and muscle spasms and, like, atrophy to 7 my legs. 8 And, I've had a lot of surgery. And, like, 9 I've taken a lot of pain medication. 10 Like, even to this day, I'm 19 years old. 11 I shouldn't have to be on, you know, all the 12 morphine and stuff, just to be able to walk. 13 And when I was younger, when I was first 14 diagnosed when I was a kid, I was -- it got bad to 15 the point that I was in a wheelchair, and I was told 16 that I was never going to be able to walk again. 17 And, so, that was -- you know, that was my 18 life. 19 And -- but when I got a little older, 20 I smoked pot for the first time, and I just stood 21 up. Like, that is incredible. 22 Like, I was told I was never going to walk 23 again. And, like, I'm standing. 24 And to this day, I know I'm using a cane, 25 but, the fact that I'm even walking is beyond, like, 1 amazing, and miraculous. And it's due to the 2 cannabis use. 3 And it's definitely -- it needs to be -- we 4 need to have safe access, because even though 5 I have -- you know, I access it and I get it, 6 I would much rather be in a professional, you know, 7 safe setting. 8 And especially when you're in pain 9 management, you can't even, like, mention cannabis. 10 You can't mention it, because then your whole 11 treatment plan gets, like, eradicated, and you can't 12 continue any of the treatment plan. 13 And it's just very important. It needs to 14 be, you know -- we need to have safe access. 15 And it's -- thank you. 16 SENATOR SAVINO: You're absolutely right, we 17 shouldn't have patients placing their liberty in 18 jeopardy, as well as their health. 19 Absolutely right. 20 And, finally, Andrei Bogolub -- 21 ANDREI BOGOLUBOV: Bogolubov. 22 SENATOR SAVINO: Thank you. Bogolubov. 23 Everybody has hard names today. I don't know 24 what it is. 25 There has been a lot of talk about 1 alternative methods of dosing, and you have a 2 product that's one of them. 3 So, if want to describe the PalliaTech 4 method. 5 ANDREI BOGOLUBOV: Thank you to both of you, 6 and to the other members of the Panel, for this, and 7 for your leadership, Senator Savino. 8 I am with PalliaTech. We're a company based 9 in Long Island, and we're working on advancing the 10 science and practice of palliative care, 11 particularly in cannabis delivery -- cannabis -- the 12 delivery of cannabis therapies. 13 SENATOR SAVINO: Is that on? 14 ANDREI BOGOLUBOV: Yes. 15 SENATOR SAVINO: It is? 16 ANDREI BOGOLUBOV: We have -- I'll just sit 17 closer. Sorry. 18 We have a medical device that we are 19 building, that will deliver the whole dose in a 20 metered form, single dose, smokelessly. 21 We think this is a very important aspect. 22 We support the legislation, but it's an 23 important aspect that is missing and should be 24 included in the legislation. 25 I have today the testimony of 1 Dr. Steven Paterno, the co-director of the 2 Duke Cancer Center, who's on a number of our science 3 advisory board. 4 I will cut this back dramatically, and get 5 right to the point, and just read the relevant 6 excerpts. 7 What Dr. Paterno says, in his field of cancer 8 and pain management for cancer, that there's a lot 9 of interest in adding medical cannabis to their 10 symptom management [unintelligible]. 11 In his view, the debate's on over whether 12 there's efficacy. 13 The question is: How do you deliver that? 14 And his question is: 15 15 years after California first legalized 16 medical use, most physicians, and almost all, we 17 think all medical institutions, in California and 18 other medical-cannabis states, cannot and will not 19 recommend cannabis to most, if not all, of their 20 patients who might benefit from the treatment. 21 And the question is: Why is that so? 22 First, under current conventional methods of 23 administrations, doctors can go no further than 24 certifying that a patient has a qualifying condition 25 because they cannot deliver cannabis as a medicine 1 in a metered dose. 2 That's very important for doctors, for 3 liability reasons, and, because that is how they're 4 used to treating patients: to the dose-response 5 curve. 6 So unable to do that, all they can do is 7 suggest that their patients try cannabis and hope 8 for the best. 9 And that certainly works for many people. 10 You can get relief that way. 11 However, it's not the physician-guided care 12 envisioned in the legislation. 13 There is also a risk that a person with a 14 serious disease will be self-medicating to unknown, 15 uncontrolled, and widely variable levels that are 16 unacceptable to a doctor. 17 Certainly, people who have a serious disease 18 will take that option because the alternative is 19 unacceptable. 20 But for a physician, the tool is not there, 21 and that's an important problem. 22 The second obstacle is that the conventional 23 methods are not safe and clinically appropriate for 24 many people. Not all, again. 25 But for many patients, the primary method, 1 smoking, is unsafe for everyone, and is not an 2 acceptable alternative for many patients 3 populations, including thousands of New Yorkers. 4 Cannabis smoke has more tar than tobacco and 5 similar carcinogenic compounds, and similar 6 respiratory risks. And that's particularly 7 dangerous for people with compromised immune 8 systems, such as people with AIDS and cancer. 9 Edibles are not unsafe, but they have some 10 serious limitations as a form of treatment. 11 Obviously, people can get relief from them, 12 but, they take 45 minutes to get relief. They 13 deliver only 5 to 20 percent of the potential 14 bioavailability of the beneficial chemicals. 15 So, there's a wide fluctuation in what 16 patients are getting, and that creates a problem, 17 again, for doctors. 18 Also, an edible doesn't work for someone 19 who's, through pain or their treatment regimen, has 20 lost their appetite and has nausea and vomiting, 21 such as chemotherapy or in the late stage of any 22 disease where you have pain and you lose your 23 appetite. A brownie isn't going the work for you. 24 So, without some sort of an alternative, the 25 net effect, if you don't include that metered-dosed 1 option in the legislation, is that some people will 2 be left behind with no viable alternative, despite 3 the best of intentions. 4 These are patients who need rapid, consistent 5 relief without smoking: 6 Those who can't eat, as I've mentioned those; 7 Any terminal-stage patient who's 8 immunocompromised or has a declining cardiopulmonary 9 function; 10 Lost appetite, diversion of food. 11 Patients who have multidrug treatment 12 regiment and need the reduced dosage variability to 13 minimize the adverse effects, doctors need to know 14 what they're putting into that patient because 15 there's a range of other pharmaceuticals involved; 16 And people whose caregivers can't or won't 17 take the risk of having secondary smoke. 18 That's a lot of patients who need the help of 19 cannabis the most. They include: 20 Cancer patients getting aggressive 21 chemotherapy; 22 MS, AIDS, and Chron's disease patients in 23 advanced stages; 24 Patients with life-threatening and disabling 25 cardiovascular complications of diabetes; 1 Anyone with advanced diabetic neuropathy; 2 If you have [unintelligible] or 3 chemotherapy-induced nausea; 4 And those with cardiopulmonary functions. 5 So, we're talking about a lot of people here. 6 So what we're doing is, we'd like to 7 respectfully urge, maybe to include in your 8 legislation, a medical standard of care that works 9 for all of these patients. 10 We have a technology, the vaporization 11 technology, that delivers a smokeless dose and a 12 metered dose, but there's other things, as well. 13 Charlotte's Web is a smokeless metered-dose 14 option. It's in a measured dose of oil. 15 And, so, these are essential. This is an 16 essential option for all those patients who simply 17 say they can't smoke a joint or eat a brownie. 18 This option, also, from the State's point of 19 view, is very important, because it answers the 20 Drug Enforcement Administration's position on 21 cannabis, where they say that medical-cannabis 22 models, as they currently exist, and I'm quoting, 23 "have not dealt with ensuring that the product meets 24 the standards of modern medical, quality, safety, 25 and efficiency." 1 And they cite, specifically, smoke marijuana, 2 and the lack of standardized dosage and composition. 3 This goes to Senator Hassell-Thompson's 4 comments and questions on dosing. 5 So, therefore, we would like to submit and 6 request that you add a provision that specifically 7 includes and allows a metered smokeless form of -- 8 of all the forms, metered smokeless forms, of 9 administration. 10 Our view on why that's necessary is that, in 11 a context of federal prohibition, anything you don't 12 specifically allow, you've excluded, effectively. 13 No one's going to deliver that option; take 14 the time and the effort to try and enter the market, 15 and run the risk, if they're not afforded the 16 protection of state law, such as the other methods. 17 Thank you very much. 18 SENATOR SAVINO: Thank you. 19 And that -- thank you, everyone. 20 [Applause.] 21 SENATOR SAVINO: That concludes the 22 roundtable discussion. 23 And, again, I want to thank all of you for 24 sharing your personal stories, your testimony, and 25 your advocacy. 1 The day is young. There are Senators to be 2 hunted down. 3 Go get 'em. 4 Thank you. 5 And thanks, Senator Grisanti, for sitting 6 through most of it with me. 7 SENATOR GRISANTI: Thank you. 8 9 (Whereupon, at approximately 1:10 p.m., 10 the Compassionate Care Act Roundtable Discussion 11 held before the New York State Senate concluded, 12 and adjourned.) 13 14 ---oOo--- 15 16 17 18 19 20 21 22 23 24 25