A 8243: Establishes a state frontotemporal degeneration advisory committee which shall be charged with recommending to the department long range objectives, goals and priorities, and provide advice on the planning, coordination and development of needed services.

  
  STATE OF NEW YORK ________________________________________________________________________ 8243 2025-2026 Regular Sessions  IN ASSEMBLY May 5, 2025 ___________ Introduced by M. of A. PAULIN -- read once and referred to the Committee on Health AN ACT to amend the public health law, in relation to establishing a state frontotemporal degeneration advisory committee 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 article 2 20-C to read as follows: 3 ARTICLE 20-C 4 FRONTOTEMPORAL DEGENERATION ADVISORY COMMITTEE 5 Section 2020. Frontotemporal degeneration advisory committee. 6 2021. Reports. 7 § 2020. Frontotemporal degeneration advisory committee. 1. The 8 department shall, within ninety days of the effective date of this 9 section, establish a frontotemporal degeneration advisory committee 10 which shall be charged with recommending to the department long range 11 objectives, goals and priorities. It shall also provide advice on the 12 planning, coordination and development of needed services. In making 13 such recommendations, the committee shall review and consider: 14 (a) rates of clinical diagnosis of frontotemporal degeneration by 15 county; 16 (b) how many records have been included and reported into the depart- 17 ment's frontotemporal degeneration registry; 18 (c) demographic information such as patients by age, gender and race; 19 (d) the number of new diagnoses in the preceding year; 20 (e) advancements in the treatment of frontotemporal degeneration; 21 (f) the availability and accessibility of resources for the care of 22 patients with frontotemporal degeneration and any disparities that may 23 exist in the regional availability of services; 24 (g) information related to the cost of care for frontotemporal degen- 25 eration disorders; and EXPLANATION--Matter in italics (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD11679-01-5 
 A. 8243 2 1 (h) frequency of and causes of misdiagnosis related to frontotemporal 2 degeneration disorders. 3 2. Members of the committee shall be selected by the governor, the 4 legislature and the commissioner. The governor, the temporary president 5 of the senate, the speaker of the assembly and the commissioner shall 6 each select two committee members and the minority leaders of the senate 7 and the assembly shall each select one committee member. Membership of 8 the committee shall include: 9 (i) a neurologist; 10 (ii) a speech pathologist; 11 (iii) a primary care provider; 12 (iv) a physician informaticist; 13 (v) a patient living with frontotemporal degeneration; 14 (vi) a caregiver of a patient living with frontotemporal degeneration; 15 (vii) a public health professional; 16 (viii) a population health researcher familiar with registries; 17 (ix) a frontotemporal degeneration researcher; 18 (x) a member of an organization that raises awareness about and 19 promotes research for the treatment of frontotemporal degeneration; and 20 (xi) anyone else the commissioner deems necessary. 21 3. The members of the committee shall receive no compensation for 22 their services, but shall be allowed their actual and necessary expenses 23 incurred in the performance of their duties hereunder, subject to the 24 approval of the commissioner. 25 § 2021. Reports. 1. On or before January first, two thousand twenty- 26 seven, and every year thereafter, the department, in conjunction with 27 the advisory committee, shall report to the legislature and governor a 28 yearly program summary update on the rate of clinical diagnoses of fron- 29 totemporal degeneration disorders in the state. Such report shall 30 include: 31 (a) the incidence and prevalence of frontotemporal degeneration by 32 county; 33 (b) how many records have been included and reported into the regis- 34 try; 35 (c) demographic information such as patients by age, gender and race; 36 (d) the number of new diagnoses in the preceding year; 37 (e) a summary of advancements in the treatment and newly developed 38 treatments of frontotemporal degeneration; 39 (f) a list of resources for the families of patients diagnosed with 40 frontotemporal degeneration disorder, which shall include but not be 41 limited to support from the state or federal government, support groups 42 and helplines; 43 (g) the resources available for the care of patients with frontotempo- 44 ral degeneration by region; 45 (h) information related to the cost of care for patients who have been 46 diagnosed with frontotemporal degeneration disorder; and 47 (i) the number of patients diagnosed with frontotemporal degeneration 48 disorder who had previously received an incorrect diagnosis for their 49 frontotemporal degeneration related symptoms and the amount of time it 50 took to receive the frontotemporal degeneration disorder diagnosis. 51 2. The yearly report shall be published in a downloadable format on 52 the department's website and the designated New York state frontotempo- 53 ral degeneration registry website. 54 § 2. This act shall take effect on the thirtieth day after it shall 55 have become a law.