A 11655: Establishes a rare kidney disease screening pilot program within the department of health to operate in at least two counties or regions in the state, targeting at-risk populations, to improve early diagnosis of RKD, connect patients with treatments and care, and evaluate the effectiveness and scalability of state-based RKD screening initiatives.

  
  STATE OF NEW YORK ________________________________________________________________________ 11655  IN ASSEMBLY July 29, 2026 ___________ Introduced by COMMITTEE ON RULES -- (at request of M. of A. Tapia) -- read once and referred to the Committee on Health AN ACT to amend the public health law, in relation to establishing a rare kidney disease screening pilot program; and providing for the repeal of such provisions upon expiration thereof 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 2 207-b to read as follows: 3 § 207-b. Rare kidney disease screening pilot program. 1. Definitions. 4 For the purposes of this section, the following terms shall have the 5 following meanings: 6 (a) "Rare kidney disease" or "RKD" mean, without limitation, the 7 following conditions: focal segmental glomerulosclerosis (FSGS), IgA 8 Nephropathy, C3 Glomerulopathy, Membranous Nephropathy, Alport syndrome, 9 and other non-diabetic, non-hypertensive forms of chronic kidney disease 10 identifiable through urinalysis, genetic testing, or related diagnos- 11 tics. 12 (b) "At-risk populations" means communities with statistically higher 13 incidences of RKD or kidney failure, including but not limited to Afri- 14 can American, Asian American, and Hispanic communities, and populations 15 with limited access to specialty care. 16 (c) "Program" means the rare kidney disease screening pilot program 17 established pursuant to subdivision two of this section. 18 2. Establishment. The department shall establish a rare kidney disease 19 screening pilot program, to operate in at least two counties or 20 geographic regions within the state, targeting at-risk populations. The 21 purpose of such pilot program shall be to improve early diagnosis of 22 RKD, connect patients with treatments and care, and evaluate the effec- 23 tiveness and scalability of state-based RKD screening initiatives. 24 3. Program components. The department shall incorporate the following 25 into the program: 26 (a) provision of the use of effective, low-cost RKD screening tools 27 including, but not limited to: EXPLANATION--Matter in italics (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD15943-01-6 
 A. 11655 2 1 (i) urinalysis for proteinuria and other markers; 2 (ii) genetic testing, where appropriate and clinically indicated; 3 (iii) blood tests assessing kidney function; and 4 (iv) other diagnostic technologies, as determined appropriate by the 5 department; 6 (b) provision of the use of mobile health screening units to conduct 7 community-based outreach, education, and testing, particularly in under- 8 served areas and schools; 9 (c) coordination with local healthcare providers, academic insti- 10 tutions, community health centers, and relevant non-profit organizations 11 to reach eligible participants; 12 (d) prioritization of participation from at-risk communities; and 13 (e) facilitation of culturally competent patient education, including 14 multilingual resources, to address health literacy and communication 15 barriers. 16 4. Data collection and reporting. (a) The department shall collect and 17 analyze data from the program, including but not limited to: 18 (i) the number of individuals screened; 19 (ii) demographic data of participants; 20 (iii) the number and types of diagnoses made; 21 (iv) referrals to specialty care; 22 (v) estimated impacts on health outcomes; and 23 (vi) potential cost savings to the Medicaid program and other payors. 24 (b) On or before January first, two thousand thirty, the department 25 shall submit a written report to the governor, the temporary president 26 of the senate, the speaker of the assembly, and the chairs of the health 27 committees of the senate and assembly. Such report shall include recom- 28 mendations regarding continuation, expansion, or modification of the 29 program and may include a legislative proposal for establishing a perma- 30 nent RKD screening initiative statewide. 31 5. Duration and funding. The program shall commence no later than 32 January first, two thousand twenty-eight, and shall operate until Janu- 33 ary first, two thousand thirty. Funds for the implementation and opera- 34 tion of the program may be appropriated from any source made available 35 for such purpose, including but not limited to state appropriations, 36 federal grants, and public-private partnerships. 37 6. Rules and regulations. The commissioner shall be authorized to 38 promulgate any rules and/or regulations necessary to implement the 39 provisions of this section. 40 § 2. This act shall take effect immediately and shall expire January 41 31, 2030 when upon such date the provisions of this act shall be deemed 42 repealed.