S T A T E O F N E W Y O R K ________________________________________________________________________ 6626 2009-2010 Regular Sessions I N A S S E M B L Y March 6, 2009 ___________ Introduced by M. of A. GREENE, CASTRO, EDDINGTON, JAFFEE, PHEFFER -- Multi-Sponsored by -- M. of A. SWEENEY, WEISENBERG -- read once and referred to the Committee on Health AN ACT to amend the public health law, the tax law and the state finance law, in relation to providing for taxpayer gifts for lupus education and prevention, and establishing the lupus education and prevention fund and outreach program THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM- BLY, DO ENACT AS FOLLOWS: 1 Section 1. Legislative intent. The legislature hereby finds the 2 following: 3 (a) Lupus is a serious, complex, debilitating autoimmune disease that 4 can cause inflammation and tissue damage to virtually any organ system 5 in the body, including the skin, joints, other connective tissue, blood 6 and blood vessels, heart, lungs, kidney, and brain. 7 (b) Lupus research estimates that approximately one and a half to two 8 million Americans live with some form of lupus; lupus affects women nine 9 times more often than men and eighty percent of newly diagnosed cases of 10 lupus develop among women of childbearing age. 11 (c) Lupus disproportionately affects women of color -- it is two to 12 three times more common among African-Americans, Hispanics, Asians and 13 Native Americans and is generally more prevalent in minority populations 14 -- a health disparity that remains unexplained. According to the Centers 15 for Disease Control and Prevention the rate of lupus mortality has 16 increased since the late 1970s and is higher among older African-Ameri- 17 can women. 18 (d) No new drugs have been approved by the U.S. Food and Drug Adminis- 19 tration specifically for lupus in nearly forty years and while current 20 treatments for the disease can be effective, they can lead to damaging 21 side effects. EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD09772-02-9 A. 6626 2 1 (e) The pain and fatigue associated with lupus can threaten people's 2 ability to live independently, make it difficult to maintain employment 3 and lead normal lives, and one in five people with lupus is disabled by 4 the disease, and consequently receives support from government programs, 5 including Medicare, Medicaid, social security disability, and social 6 security supplemental income. 7 (f) The estimated average annual cost of medical treatment for an 8 individual with lupus can range between ten thousand dollars and thirty 9 thousand dollars; for people who have the most serious form of lupus, 10 medical costs can greatly exceed this amount, causing a significant 11 economic, emotional and social burden to the entire family and society. 12 (g) More than half of the people with lupus suffer four or more years 13 and visit three or more physicians before obtaining a diagnosis of 14 lupus; early diagnosis of and commencement of treatment for lupus can 15 prevent or reduce serious organ damage, disability, and death. 16 (h) Despite the magnitude of lupus and its impact on individuals and 17 families, health professional and public understanding of lupus remains 18 low; only one of five Americans can provide even basic information about 19 lupus, and awareness of lupus is lowest among adults ages eighteen to 20 thirty-four -- the age group most likely to develop symptoms of lupus. 21 (i) Lupus is a significant national health issue that deserves a 22 comprehensive and coordinated response by state and federal governments 23 with involvement of the health care provider, patient, and public health 24 communities. 25 S 2. Subdivision 1 of section 207 of the public health law is amended 26 by adding a new paragraph (g) to read as follows: 27 (G) THE DANGERS OF, INCLUDING WAYS TO PREVENT THE INCIDENCE AND SEVER- 28 ITY OF, LUPUS, A DEBILITATING AUTOIMMUNE DISEASE THAT CAN CAUSE INFLAM- 29 MATION AND TISSUE DAMAGE TO VIRTUALLY ANY ORGAN SYSTEM IN THE BODY, 30 INCLUDING THE SKIN, JOINTS, OTHER CONNECTIVE TISSUE, BLOOD AND BLOOD 31 VESSELS, HEART, LUNG, KIDNEY AND BRAIN, AND WHICH AFFECTS WOMEN, PARTIC- 32 ULARLY WOMEN OF COLOR, IN A DISPROPORTIONATE MANNER; PROVIDED THAT THE 33 PROGRAM SHALL INCLUDE AN ADVISORY COUNCIL UNDER THIS SECTION THAT SHALL 34 INCLUDE REPRESENTATIVES OF PEOPLE WITH LUPUS AND THEIR FAMILIES AND 35 HEALTH CARE PROVIDERS WHO SPECIALIZE IN TREATING LUPUS, AMONG OTHERS. 36 S 3. Subdivision 7 of section 207 of the public health law, as added 37 by chapter 414 of the laws of 2005, is amended to read as follows: 38 7. In addition to state funds appropriated for programs under this 39 section, the commissioner may accept grants from public or private 40 sources for these programs. The commissioner, in administering this 41 section, shall seek to coordinate the department's programs with other 42 public and private programs, and may undertake joint or cooperative 43 programs with other public or private entities, INCLUDING MAKING GRANTS 44 (WITHIN AMOUNTS APPROPRIATED THEREFOR AND CONSISTENT WITH APPLICABLE 45 LAW) TO PUBLIC OR NOT-FOR-PROFIT ENTITIES. 46 S 4. The tax law is amended by adding a new section 209-G to read as 47 follows: 48 S 209-G. GIFT FOR LUPUS EDUCATION AND PREVENTION. A TAXPAYER IN ANY 49 TAXABLE YEAR MAY ELECT TO CONTRIBUTE TO THE SUPPORT OF THE LUPUS EDUCA- 50 TION AND PREVENTION FUND. SUCH CONTRIBUTION SHALL BE IN ANY WHOLE DOLLAR 51 AMOUNT AND SHALL NOT REDUCE THE AMOUNT OF THE STATE TAX OWED BY SUCH 52 TAXPAYER. THE COMMISSIONER SHALL INCLUDE SPACE ON THE CORPORATE INCOME 53 TAX RETURN TO ENABLE A TAXPAYER TO MAKE SUCH CONTRIBUTION. NOTWITH- 54 STANDING ANY OTHER PROVISION OF LAW, ALL REVENUES COLLECTED PURSUANT TO 55 THIS SECTION SHALL BE CREDITED TO THE LUPUS EDUCATION AND PREVENTION A. 6626 3 1 FUND AND SHALL BE USED ONLY FOR THOSE PURPOSES ENUMERATED IN SECTION 2 NINETY-SEVEN-JJJJ OF THE STATE FINANCE LAW. 3 S 5. The tax law is amended by adding a new section 630-b to read as 4 follows: 5 S 630-B. GIFT FOR LUPUS EDUCATION AND PREVENTION. AN INDIVIDUAL IN ANY 6 TAXABLE YEAR MAY ELECT TO CONTRIBUTE TO THE LUPUS EDUCATION AND 7 PREVENTION FUND. SUCH CONTRIBUTION SHALL BE IN ANY WHOLE DOLLAR AMOUNT 8 AND SHALL NOT REDUCE THE AMOUNT OF STATE TAX OWED BY SUCH INDIVIDUAL. 9 THE COMMISSIONER SHALL INCLUDE SPACE ON THE PERSONAL INCOME TAX RETURN 10 TO ENABLE A TAXPAYER TO MAKE SUCH CONTRIBUTION. NOTWITHSTANDING ANY 11 OTHER PROVISION OF LAW ALL REVENUES COLLECTED PURSUANT TO THIS SECTION 12 SHALL BE CREDITED TO THE LUPUS EDUCATION AND PREVENTION FUND AND USED 13 ONLY FOR THOSE PURPOSES ENUMERATED IN SECTION NINETY-SEVEN-JJJJ OF THE 14 STATE FINANCE LAW. 15 S 6. The state finance law is amended by adding a new section 97-jjjj 16 to read as follows: 17 S 97-JJJJ. LUPUS EDUCATION AND PREVENTION FUND. 1. THERE IS HEREBY 18 ESTABLISHED IN THE JOINT CUSTODY OF THE COMMISSIONER OF TAXATION AND 19 FINANCE AND THE COMPTROLLER, A SPECIAL FUND TO BE KNOWN AS THE "LUPUS 20 EDUCATION AND PREVENTION FUND". 21 2. SUCH FUND SHALL CONSIST OF ALL REVENUES RECEIVED BY THE DEPARTMENT 22 OF TAXATION AND FINANCE, PURSUANT TO THE PROVISIONS OF SECTION TWO 23 HUNDRED NINE-G AND SECTION SIX HUNDRED THIRTY-B OF THE TAX LAW, AND ALL 24 OTHER MONEYS APPROPRIATED, CREDITED OR TRANSFERRED THERETO FROM ANY 25 OTHER FUND OR SOURCE PURSUANT TO LAW. NOTHING CONTAINED IN THIS SECTION 26 SHALL PREVENT THE STATE FROM RECEIVING GRANTS, GIFTS OR BEQUESTS FOR THE 27 PURPOSES OF THE FUND AS DEFINED IN THIS SECTION AND DEPOSITING THEM INTO 28 THE FUND ACCORDING TO LAW. 29 3. MONIES OF THE FUND SHALL BE EXPENDED ONLY FOR LUPUS EDUCATION AND 30 PREVENTION PROJECTS. AS USED IN THIS SECTION, "LUPUS EDUCATION AND 31 PREVENTION PROJECTS" MEANS EDUCATIONAL PROJECTS, INCLUDING GRANTS FOR 32 LUPUS EDUCATION AND PREVENTION PROGRAMS, WHICH ARE APPROVED BY THE 33 DEPARTMENT OF HEALTH. 34 4. MONIES SHALL BE PAYABLE FROM THE FUND ON THE AUDIT AND WARRANT OF 35 THE COMPTROLLER ON VOUCHERS APPROVED AND CERTIFIED BY THE COMMISSIONER 36 OF HEALTH. 37 5. TO THE EXTENT PRACTICABLE, THE COMMISSIONER OF HEALTH SHALL ENSURE 38 THAT ALL MONIES RECEIVED DURING A FISCAL YEAR ARE EXPENDED PRIOR TO THE 39 END OF THAT FISCAL YEAR. 40 S 7. This act shall take effect immediately.