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| 1 | 1 | <STYLE><!--U {color: Green}S {color: RED} I {color: DARKBLUE; background-color:yellow} P.brk {page-break-before:always}--></STYLE> <BASEFONT SIZE=3> <PRE WIDTH="99"> <FONT SIZE=5><B> STATE OF NEW YORK</B></FONT> ________________________________________________________________________ 7431 2025-2026 Regular Sessions <FONT SIZE=5><B> IN SENATE</B></FONT> April 16, 2025 ___________ Introduced by Sen. HINCHEY -- read twice and ordered printed, and when printed to be committed to the Committee on Health AN ACT to amend the public health law, in relation to establishing a state frontotemporal degeneration advisory committee <B><U>The People of the State of New York, represented in Senate and Assem-</U></B> <B><U>bly, do enact as follows:</U></B> 1 Section 1. The public health law is amended by adding a new article 2 20-C to read as follows: 3 <B><U>ARTICLE 20-C</U></B> 4 <B><U>FRONTOTEMPORAL DEGENERATION ADVISORY COMMITTEE</U></B> 5 <B><U>Section 2020. Frontotemporal degeneration advisory committee.</U></B> 6 <B><U>2021. Reports.</U></B> 7 <B><U>§ 2020. Frontotemporal degeneration advisory committee. 1. The</U></B> 8 <B><U>department shall, within ninety days of the effective date of this</U></B> 9 <B><U>section, establish a frontotemporal degeneration advisory committee</U></B> 10 <B><U>which shall be charged with recommending to the department long range</U></B> 11 <B><U>objectives, goals and priorities. It shall also provide advice on the</U></B> 12 <B><U>planning, coordination and development of needed services. In making</U></B> 13 <B><U>such recommendations, the committee shall review and consider:</U></B> 14 <B><U>(a) rates of clinical diagnosis of frontotemporal degeneration by</U></B> 15 <B><U>county;</U></B> 16 <B><U>(b) how many records have been included and reported into the depart-</U></B> 17 <B><U>ment's frontotemporal degeneration registry;</U></B> 18 <B><U>(c) demographic information such as patients by age, gender and race;</U></B> 19 <B><U>(d) the number of new diagnoses in the preceding year;</U></B> 20 <B><U>(e) advancements in the treatment of frontotemporal degeneration;</U></B> 21 <B><U>(f) the availability and accessibility of resources for the care of</U></B> 22 <B><U>patients with frontotemporal degeneration and any disparities that may</U></B> 23 <B><U>exist in the regional availability of services;</U></B> 24 <B><U>(g) information related to the cost of care for frontotemporal degen-</U></B> 25 <B><U>eration disorders; and</U></B> EXPLANATION--Matter in <B><U>italics</U></B> (underscored) is new; matter in brackets [<B><S> </S></B>] is old law to be omitted. LBD11679-01-5 </PRE><P CLASS="brk"><PRE WIDTH="99"> S. 7431 2 1 <B><U>(h) frequency of and causes of misdiagnosis related to frontotemporal</U></B> 2 <B><U>degeneration disorders.</U></B> 3 <B><U>2. Members of the committee shall be selected by the governor, the</U></B> 4 <B><U>legislature and the commissioner. The governor, the temporary president</U></B> 5 <B><U>of the senate, the speaker of the assembly and the commissioner shall</U></B> 6 <B><U>each select two committee members and the minority leaders of the senate</U></B> 7 <B><U>and the assembly shall each select one committee member. Membership of</U></B> 8 <B><U>the committee shall include:</U></B> 9 <B><U>(i) a neurologist;</U></B> 10 <B><U>(ii) a speech pathologist;</U></B> 11 <B><U>(iii) a primary care provider;</U></B> 12 <B><U>(iv) a physician informaticist;</U></B> 13 <B><U>(v) a patient living with frontotemporal degeneration;</U></B> 14 <B><U>(vi) a caregiver of a patient living with frontotemporal degeneration;</U></B> 15 <B><U>(vii) a public health professional;</U></B> 16 <B><U>(viii) a population health researcher familiar with registries;</U></B> 17 <B><U>(ix) a frontotemporal degeneration researcher;</U></B> 18 <B><U>(x) a member of an organization that raises awareness about and</U></B> 19 <B><U>promotes research for the treatment of frontotemporal degeneration; and</U></B> 20 <B><U>(xi) anyone else the commissioner deems necessary.</U></B> 21 <B><U>3. The members of the committee shall receive no compensation for</U></B> 22 <B><U>their services, but shall be allowed their actual and necessary expenses</U></B> 23 <B><U>incurred in the performance of their duties hereunder, subject to the</U></B> 24 <B><U>approval of the commissioner.</U></B> 25 <B><U>§ 2021. Reports. 1. On or before January first, two thousand twenty-</U></B> 26 <B><U>seven, and every year thereafter, the department, in conjunction with</U></B> 27 <B><U>the advisory committee, shall report to the legislature and governor a</U></B> 28 <B><U>yearly program summary update on the rate of clinical diagnoses of fron-</U></B> 29 <B><U>totemporal degeneration disorders in the state. Such report shall</U></B> 30 <B><U>include:</U></B> 31 <B><U>(a) the incidence and prevalence of frontotemporal degeneration by</U></B> 32 <B><U>county;</U></B> 33 <B><U>(b) how many records have been included and reported into the regis-</U></B> 34 <B><U>try;</U></B> 35 <B><U>(c) demographic information such as patients by age, gender and race;</U></B> 36 <B><U>(d) the number of new diagnoses in the preceding year;</U></B> 37 <B><U>(e) a summary of advancements in the treatment and newly developed</U></B> 38 <B><U>treatments of frontotemporal degeneration;</U></B> 39 <B><U>(f) a list of resources for the families of patients diagnosed with</U></B> 40 <B><U>frontotemporal degeneration disorder, which shall include but not be</U></B> 41 <B><U>limited to support from the state or federal government, support groups</U></B> 42 <B><U>and helplines;</U></B> 43 <B><U>(g) the resources available for the care of patients with frontotempo-</U></B> 44 <B><U>ral degeneration by region;</U></B> 45 <B><U>(h) information related to the cost of care for patients who have been</U></B> 46 <B><U>diagnosed with frontotemporal degeneration disorder; and</U></B> 47 <B><U>(i) the number of patients diagnosed with frontotemporal degeneration</U></B> 48 <B><U>disorder who had previously received an incorrect diagnosis for their</U></B> 49 <B><U>frontotemporal degeneration related symptoms and the amount of time it</U></B> 50 <B><U>took to receive the frontotemporal degeneration disorder diagnosis.</U></B> 51 <B><U>2. The yearly report shall be published in a downloadable format on</U></B> 52 <B><U>the department's website and the designated New York state frontotempo-</U></B> 53 <B><U>ral degeneration registry website.</U></B> 54 § 2. This act shall take effect on the thirtieth day after it shall 55 have become a law. |