STATE OF NEW YORK ________________________________________________________________________ 736 2019-2020 Regular Sessions IN ASSEMBLY (Prefiled) January 9, 2019 ___________ Introduced by M. of A. L. ROSENTHAL -- read once and referred to the Committee on Health AN ACT to amend the public health law, in relation to establishing a lymphedema and lymphatic diseases research grants program; and to amend the state finance law, in relation to creating the lymphedema and lymphatic diseases research and education fund; and making an appropriation therefor The People of the State of New York, represented in Senate and Assem- bly, do enact as follows: 1 Section 1. The public health law is amended by adding a new section 2 208-b to read as follows: 3 § 208-b. Lymphedema and lymphatic diseases research grants program. 1. 4 The department shall, within available appropriations, establish the 5 lymphedema and lymphatic diseases research grants program, hereafter 6 "grants program." Such grants program funds shall be used to provide 7 financial assistance in the form of grants, not to exceed fifty thousand 8 dollars per grant, to New York state biomedical research institutions 9 for working capital to further new and emerging research and development 10 for the diagnosis and treatment of lymphedema and lymphatic diseases. 11 Such grants shall be awarded on a competitive basis to biomedical 12 research institutions responding to requests for proposals issued by the 13 foundation when funds are appropriated. 14 2. (a) "Biomedical research institution" shall mean a not-for-profit 15 university, college, hospital, private or federal research laboratory 16 located in New York state, or a consortium of such entities, that 17 conducts an intensive and ongoing program of research and development 18 directly related to lymphedema and/or lymphatic diseases research. 19 (b) "Lymphedema" shall mean an accumulation of lymphatic fluid in the 20 interstitial tissue that causes swelling, most often in the arms and/or 21 legs, and occasionally in other parts of the body, from any cause. EXPLANATION--Matter in italics (underscored) is new; matter in brackets [] is old law to be omitted. LBD03595-01-9A. 736 2 1 (c) "Lymphatic diseases" shall include but not be limited to: insuf- 2 ficiency of lymphatic circulatory function (to include all forms of 3 lymphedema), lipedema, complex congenital diseases of the lymphatic 4 vasculature, including lymphangiomatosis, lymphangioleio-myomatosis, 5 lymphangiectasias, lymphangiomas, cystic hygromas, Gorham's disease, 6 lymphangiosarcoma, and complex vascular/lymphatic malformations. 7 3. In addition to such other criteria as the department may adopt in 8 rules and regulations for the consideration of applications for grants 9 pursuant to subdivision one of this section, the foundation shall: 10 (a) determine that the applicant is unable to obtain sufficient fund- 11 ing on reasonable terms from other public or private sources to permit 12 the institution's planned investment to proceed without the required 13 assistance; 14 (b) give priority to those applications for assistance from biomedical 15 research institutions that secure private support for research or commit 16 new resources to the expansion of lymphedema and lymphatic diseases 17 research; and 18 (c) consider the potential long term economic benefits to the state of 19 awarding the specific grant and whether the grant will result in a 20 reasonable likelihood of success in meeting the purposes for which it 21 was sought by the applicant. 22 4. The department may apply to the national institutes of health, the 23 United States department of health and human services, and other appro- 24 priate federal, public, and private entities for funding. Such monies 25 shall be deposited into the lymphedema and lymphatic diseases research 26 and education fund, established pursuant to section ninety-nine-ff of 27 the state finance law. 28 5. The department shall submit to the governor, the speaker of the 29 assembly, the temporary president of the senate, and to any other state 30 legislator at his or her request, a report on the grants program by 31 September first, two thousand twenty-one and annually thereafter. Such 32 report shall include, for each grant awarded, the name and location of 33 the recipient, a description of the product, device, technique, system 34 or process being researched and developed, the recipient's relationship 35 to the research institution, the amount and use of the grant, the total 36 project cost, and such other information as the department shall deem 37 appropriate. Such report shall also include a list of all applicants and 38 their contact information, regardless of receiving a grant, in order to 39 help demonstrate the need for future funds. 40 6. Nothing in this section shall require the department to disclose 41 any matters involving confidential intellectual property or work prod- 42 uct, whether patentable or not, including any formula, plan, pattern, 43 process, tool, mechanism, compound, procedure, production data or compi- 44 lation of information, which is not patented, but which is known only to 45 certain individuals who are using it to fabricate, produce or compound 46 an article of trade or service having commercial value and which gives 47 its user an opportunity to obtain a business advantage over competitors 48 who do not know it or use it. 49 § 2. The state finance law is amended by adding a new section 99-ff to 50 read as follows: 51 § 99-ff. Lymphedema and lymphatic diseases research and education 52 fund. 1. There is hereby established in the joint custody of the commis- 53 sioner of taxation and finance and the comptroller, a special fund to be 54 known as the lymphedema and lymphatic diseases research and education 55 fund, hereafter the "fund".A. 736 3 1 2. Such fund shall consist of all monies appropriated, credited, or 2 transferred thereto from any other fund or source pursuant to law. 3 Nothing contained in this section shall prevent the state from receiving 4 grants, gifts or bequests for the purposes of the fund as defined in 5 this section and depositing them into the fund according to law. 6 3. Monies of the fund shall be expended only for lymphedema and lymp- 7 hatic diseases research and education projects approved by the depart- 8 ment of health. 9 4. (a) "Lymphedema" shall mean an accumulation of lymphatic fluid in 10 the interstitial tissue that causes swelling, most often in the arms 11 and/or legs, and occasionally in other parts of the body, regardless of 12 cause. 13 (b) "Lymphatic diseases" shall include but not be limited to: insuf- 14 ficiency of lymphatic circulatory function (to include all forms of 15 lymphedema), lipedema, complex congenital diseases of the lymphatic 16 vasculature, including lymphangiomatosis, lymphangioleio-myomatosis, 17 lymphangiectasias, lymphangiomas, cystic hygromas, Gorham's disease, 18 lymphangiosarcoma, and complex vascular/lymphatic malformations. 19 (c) "Lymphedema and lymphatic diseases research and education 20 projects" shall mean research by qualified researchers, as determined by 21 the department of health, to stimulate research on the pathogenesis and 22 new treatments for lymphedema and lymphatic diseases. Education projects 23 are those projects which promote and provide information on lymphedema 24 and lymphatic diseases including: prevention, diagnosis, treatment, 25 long-term chronic care, and/or research by qualified organizations as 26 determined by the department of health. 27 5. Monies shall be payable from the fund on the audit and warrant of 28 the comptroller on vouchers approved and certified by the commissioner 29 of health. 30 6. To the extent practicable, the commissioner of health shall ensure 31 that all monies received during a fiscal year are expended prior to the 32 end of that fiscal year. 33 § 3. The sum of two hundred thousand dollars ($200,000), is hereby 34 appropriated to the department of audit and control out of any moneys in 35 the state treasury in the general fund to the credit of the lymphedema 36 and lymphatic diseases research and education fund, not otherwise appro- 37 priated, and made immediately available, for the purpose of carrying out 38 the provisions of this act. Such moneys shall be payable on the audit 39 and warrant of the comptroller on vouchers certified or approved by the 40 commissioner of health in the manner prescribed by law. 41 § 4. This act shall take effect immediately.