New York A 1175: Creates the lupus research enhancement program and the lupus research enhancement fund

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A01175 Summary:

BILL NOA01175 

&nbsp

SAME ASSAME AS S06603

&nbsp

SPONSORPeoples-Stokes

&nbsp

COSPNSRSantabarbara

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MLTSPNSR

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Add Art 2 Title 4-A §§256 - 256-e, Pub Health L; add §95-l, St Fin L

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Creates the lupus research enhancement program; creates the lupus research enhancement fund.

Go to top A01175 Actions:

BILL NOA01175 

&nbsp

01/09/2025referred to health

01/07/2026referred to health

Go to topA01175 Committee&nbspVotes:

Go to topA01175 Floor&nbspVotes:

There are no Assembly votes for this bill in this legislative session.

Go to topA01175 Text:

 STATE OF NEW YORK
 ________________________________________________________________________

 1175

 2025-2026 Regular Sessions

 IN ASSEMBLY

 January 9, 2025
 ___________

 Introduced by M. of A. PEOPLES-STOKES, SANTABARBARA -- read once and
 referred to the Committee on Health

 AN ACT to amend the public health law, in relation to creating the lupus
 research enhancement program; and to amend the state finance law, in
 relation to creating the lupus research enhancement fund

 The People of the State of New York, represented in Senate and Assem-
 bly, do enact as follows:

 1 Section 1. Article 2 of the public health law is amended by adding a
 2 new title 4-A to read as follows:
 3 TITLE IV-A
 4 LUPUS RESEARCH ENHANCEMENT ACT
 5 Section 256. Short title.
 6 256-a. Legislative intent.
 7 256-b. Definition.
 8 256-c. Lupus research enhancement program.
 9 256-d. Lupus research advisory council.
 10 256-e. Lupus research enhancement fund.
 11 § 256. Short title. This title shall be known and may be cited as the
 12 "lupus research enhancement act".
 13 § 256-a. Legislative intent. 1. The legislature hereby finds the
 14 following:
 15 (a) Lupus is a serious, complex, debilitating autoimmune disease that
 16 can cause inflammation and tissue damage to virtually any organ system
 17 in the body, including the skin, joints, other connective tissue, blood
 18 and blood vessels, heart, lungs, kidney, and brain.
 19 (b) The Lupus Foundation of America, Inc. estimates that approximately
 20 1.5 to two million Americans live with some form of lupus; lupus affects
 21 women nine times more often than men and eighty percent of newly diag-
 22 nosed cases of lupus develop among women of childbearing age.
 23 (c) Lupus disproportionately affects women of color - it is two to
 24 three times more common among African-Americans, Hispanics, Asians and

 EXPLANATION--Matter in italics (underscored) is new; matter in brackets
 [ ] is old law to be omitted.
 LBD02986-01-5

 A. 1175 2

 1 Native Americans and is generally more prevalent in minority populations
 2 - a health disparity that remains unexplained. According to the Centers
 3 for Disease Control and Prevention the rate of lupus mortality has
 4 increased since the late nineteen seventies and is higher among older
 5 African-American women.
 6 (d) No new drugs have been approved by the U.S. Food and Drug Adminis-
 7 tration specifically for lupus in nearly forty years, and while current
 8 treatments for the disease can be effective, they can lead to damaging
 9 side effects.
 10 (e) The pain and fatigue associated with lupus can threaten people's
 11 ability to live independently, make it difficult to maintain employment
 12 and lead normal lives, and one in five people with lupus is disabled by
 13 the disease, and consequently receives support from government programs,
 14 including medicare, medicaid, social security disability, and social
 15 security supplemental income.
 16 (f) The estimated average annual cost of medical treatment for an
 17 individual with lupus can range between ten thousand dollars and thirty
 18 thousand dollars; for people who have the most serious form of lupus,
 19 medical costs can greatly exceed this amount, causing a significant
 20 economic, emotional and social burden to the entire family and society.
 21 (g) More than half of the people with lupus suffer four or more years
 22 and visit three or more physicians before obtaining a diagnosis of
 23 lupus; early diagnosis of and commencement of treatment for lupus can
 24 prevent or reduce serious organ damage, disability, and death.
 25 (h) Despite the magnitude of lupus and its impact on individuals and
 26 families, health professional and pu