Provides that persons with clotting protein deficiencies who are otherwise eligible for certain health insurance programs shall have access to reimbursement for certain treatments

Summary of provisions

Subdivision 7 of section 2510 of the public health law, as amended by section 21 of part B of chapter 109 of the laws of 2010, is amended to include:

*outpatient blood clotting factor products and other treatments and services furnished in connection with the care of hemophilia and other blood clotting protein deficiencies;

Paragraph a of subdivision 7 of section 2510 of the public health law, as amended by chapter 526 of the laws of 2002 is amended to include:

* outpatient blood clotting factor products and other treatments and services furnished in connection with the care of hemophilia and other blood clotting protein deficiencies;

Subparagraphs (xv) and (xvi) of paragraph (e) of subdivision 1 of section 369-ee of the social services law, subparagraph (xv) as amended and subparagraph (xvi) as added by chapter 526 of the laws of 2002, are amended and a new paragraph (xvii) is added to read as follows:

(xv) services provided to meet the requirements of 42 D.S.C. 1396d(r);

(xvi)hospice services; and

(xvii) outpatient blood clotting factor products and other treatments and services furnished in connection with the care of hemophilia and other blood clotting protein deficiencies as defined by the commissioner of health in consultation with the superintendent.

Paragraph 13 of subsection (d) of section 4326 of the insurance law, as added by chapter 1 of the laws of 1999 is amended to read as follows:

*blood and blood products furnished in connection with surgery or inpatient hospital services or outpatient services for hemophilia and other blood clotting protein deficiencies;

Justification

Hemophilia is a rare hereditary bleeding disorder affecting roughly 2,000 New Yorkers, resulting from a deficiency in blood proteins known as clotting factors. without an adequate supply of clotting factors, individuals can experience prolonged bleeding

following routine medical and dental procedures, trauma, and a range of physical activities. Additionally, individuals with hemophilia often experience spontaneous internal bleeding that can cause severe joint damage, chronic pain, and even death.

Prior to the 1970's, individuals with hemophilia seldom lived beyond 30. Early treatment consisted of whole blood and Plasma transfusions at hospitals. These treatments were difficult, time consuming and only minimally effective. The advent of commercially prepared blood treatment, both in terms of efficacy and convenience. Most importantly, these advances allowed for home infusion.

In addition to hemophilia, there are several other disorders resulting from blood protein deficiencies. These include Von Willebrand Disease (VWD) , the most common bleeding disorder, affecting approximately two million Americans. Individuals with the severest form of VWD rely on clotting factor treatments similar to those used by individuals with hemophilia.

Clotting factor products produced today {derived from plasma or recombinant technology) are very safe and highly effective medications. Access to therapies has vastly improved both the health outcomes and quality of life for the majority of patients and their families. Many patients today are on a prophylactic regimen to prevent bleeding episodes. This preventative regimen together with the coordinated care provided by hemophilia treatment centers have significantly reduced visits to emergency rooms, hospitalizations and joint damage. Further, the ability to manage hemophilia and other bleeding disorders outside of the hospital setting has improved attendance for school-aged-children, decreased absenteeism from work for adult patients and caregivers, vastly improved the ability of affected persons to join the work force, and minimized life disruptions for the entire family.

Child Health Plus, Family Health Plus and Healthy New York presently do not cover clotting factor therapies prescribed for use at home by individuals with hemophilia and other clotting protein deficiencies. moreover, New York state is the only state in the U.S. not currently providing coverage for outpatient clotting factor products used by individuals who are eligible for the State Children's Health Insurance Program (i.e., Child Health Plus). All three programs - Child Health Plus, Family Health Plus and Healthy New York - were created to improve access to health care for low-income individuals. Having a policy in place that prevents otherwise eligible individuals with hemophilia and other bleeding disorders from accessing lifesaving medications not only violates the spirit of the policy, it is discriminating against a selected group whose health care costs are deemed to be high and fundamentally undermines the programs' overall goal of ensuring that low-income children and families have access to the quality health care.

Prior legislative history

2011 Referred to Health 2012 Referred to Health

Fiscal implications

Unknown.

Effective date

This act shall take effect on the first of April next succeeding the date upon which it shall have become law, provided that the amendments to the subdivision 7 of section 2510 of the public health law made by section two of this act shall be subject to the expiration and reversion of such subdivision pursuant to subdivision 4 of section 47 of chapter 2 of the laws of 1998, as amended, when upon such date the provisions of section three of this act shall take effect.