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History
- Referred to finance
- Referred to finance
Companion bill
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Creates the lupus research enhancement program and the lupus research enhancement fund; appropriation
In Assembly Committee · Health · Sponsor Vanessa Gibson
Full text
The text isn't available here yet. Check nysenate.gov.
Sponsor's memo
Title of bill
An act to amend the public health law, in relation to creating the lupus research enhancement program; to amend the state finance law, in relation to creating the lupus research enhancement fund; and making an appropriation therefor
Purpose or general idea of bill
To promote basic and clinical research programs designed to reduce or prevent suffering from Lupus, by providing funding, if available, to state academic medical institutions within the state currently conducting or having an interest in conducting basic and clinical, social, translational, technological, epidemiological, and behavioral research on Lupus.
Summary of specific provisions
The Commissioner of Health shall establish within the department a Lupus research enhancement program through which the department shall make grants to state academic medical institutions within the state currently conducting or having an interest in conducting basic and clinical, social, translational, technological epidemiological and behavioral research on Lupus.
Read the full memo (621 words)
The Commissioner shall establish a multidisciplinary Lupus research advisory council to monitor progress and make granting recommendations to the department. The council shall be comprised of fifteen (15) members representing a broad range of expertise and experience. The council shall be comprised as follows:
* at least three individuals with Lupus
* no more than two representatives from the Department of Health;
* at least five individuals from Lupus nonprofit health organizations;
* at least five-scientists or clinicians with experience in Lupus and who participates in various fields of scientific endeavor but not limited to, the fields of biomedical research, social, translational, behavioral and epidemiological research, and public health.
* the commissioner will choose from among the fifteen council members one member to serve as chair.
An annual report shall be transmitted to the legislature on or before December 31 as specified in the legislation.
The secretary of the Lupus research advisory council may accept grants, services, and property from the federal government, foundations, organizations, medical schools, and other entities that may be available for the purpose of fulfilling the obligations of this program.
The secretary of the research advisory council shall seek any federal waiver or waivers that may be necessary to maximize funds from the federal government.
Justification
Lupus is a serious, complex, debilitating autoimmune disease that can cause inflammation and tissue damage to virtually any organ system in the body, including the skin, joints, other connective tissues, blood and blood vessels, heart, lungs, kidney and brain.
The Lupus foundation of America, Inc. estimates that approximately 1.5 to 2 million American live with some form of lupus; Lupus affects women nine times more often than men and 80 percent of newly diagnosed cases of Lupus develop among women of childbearing age.
Lupus disproportionately affects women of color - it is two to three times more common among African-Americans, Hispanics, Asians and Native Americans and is generally more prevalent in minority populations - a health disparity that remains unexplained. According to the Center for Disease Control and Prevention the rate of Lupus mortality has increased since the 1970's and is higher among older African-American women.
No new drugs have been approved by the U.S. Food and Drug Administration specifically for Lupus in nearly 40 years. While current treatments for the disease can be effective, they can lead to damaging side effects. Despite the magnitude of Lupus and its impact on individuals and families, health professional and public understanding of Lupus remains low; only one of five Americans can provide even basic information about Lupus, and awareness of lupus is lowest among adults ages 18 to 34 - the age group most likely to develop symptoms of Lupus.
Prior legislative history
2010 - S.3663 - Same as A.10139
Fiscal implications
None.
Effective date
Immediately.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.