Assembly Bill A11655

                             
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   11655
 
                           I N  A S S E M B L Y
 
                               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:
 
   Section  1.  The  public health law is amended by adding a new section
 207-b to read as follows:
   § 207-B. RARE KIDNEY DISEASE SCREENING PILOT PROGRAM. 1.  DEFINITIONS.
 FOR  THE  PURPOSES  OF  THIS SECTION, THE FOLLOWING TERMS SHALL HAVE THE
 FOLLOWING MEANINGS:
   (A) "RARE KIDNEY DISEASE"  OR  "RKD"  MEAN,  WITHOUT  LIMITATION,  THE
 FOLLOWING  CONDITIONS:  FOCAL  SEGMENTAL  GLOMERULOSCLEROSIS (FSGS), IGA
 NEPHROPATHY, C3 GLOMERULOPATHY, MEMBRANOUS NEPHROPATHY, ALPORT SYNDROME,
 AND OTHER NON-DIABETIC, NON-HYPERTENSIVE FORMS OF CHRONIC KIDNEY DISEASE
 IDENTIFIABLE THROUGH URINALYSIS, GENETIC TESTING,  OR  RELATED  DIAGNOS-
 TICS.
   (B)  "AT-RISK POPULATIONS" MEANS COMMUNITIES WITH STATISTICALLY HIGHER
 INCIDENCES OF RKD OR KIDNEY FAILURE, INCLUDING BUT NOT LIMITED TO  AFRI-
 CAN  AMERICAN, ASIAN AMERICAN, AND HISPANIC COMMUNITIES, AND POPULATIONS
 WITH LIMITED ACCESS TO SPECIALTY CARE.
   (C) "PROGRAM" MEANS THE RARE KIDNEY DISEASE  SCREENING  PILOT  PROGRAM
 ESTABLISHED PURSUANT TO SUBDIVISION TWO OF THIS SECTION.
   2. ESTABLISHMENT. THE DEPARTMENT SHALL ESTABLISH A RARE KIDNEY DISEASE
 SCREENING  PILOT  PROGRAM,  TO  OPERATE  IN  AT  LEAST  TWO  COUNTIES OR
 GEOGRAPHIC REGIONS WITHIN THE STATE, TARGETING AT-RISK POPULATIONS.  THE
 PURPOSE  OF  SUCH  PILOT  PROGRAM SHALL BE TO IMPROVE EARLY DIAGNOSIS OF
 RKD, CONNECT PATIENTS WITH TREATMENTS AND CARE, AND EVALUATE THE  EFFEC-
 TIVENESS AND SCALABILITY OF STATE-BASED RKD SCREENING INITIATIVES.
   3.  PROGRAM COMPONENTS. THE DEPARTMENT SHALL INCORPORATE THE FOLLOWING
 INTO THE PROGRAM:
   (A) PROVISION OF THE USE OF EFFECTIVE, LOW-COST  RKD  SCREENING  TOOLS
 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
 
   (I) URINALYSIS FOR PROTEINURIA AND OTHER MARKERS;
   (II) GENETIC TESTING, WHERE APPROPRIATE AND CLINICALLY INDICATED;
   (III) BLOOD TESTS ASSESSING KIDNEY FUNCTION; AND
   (IV)  OTHER  DIAGNOSTIC TECHNOLOGIES, AS DETERMINED APPROPRIATE BY THE
 DEPARTMENT;
   (B) PROVISION OF THE USE OF MOBILE HEALTH SCREENING UNITS  TO  CONDUCT
 COMMUNITY-BASED OUTREACH, EDUCATION, AND TESTING, PARTICULARLY IN UNDER-
 SERVED AREAS AND SCHOOLS;
   (C)  COORDINATION  WITH  LOCAL  HEALTHCARE  PROVIDERS, ACADEMIC INSTI-
 TUTIONS, COMMUNITY HEALTH CENTERS, AND RELEVANT NON-PROFIT ORGANIZATIONS
 TO REACH ELIGIBLE PARTICIPANTS;
   (D) PRIORITIZATION OF PARTICIPATION FROM AT-RISK COMMUNITIES; AND
   (E) FACILITATION OF CULTURALLY COMPETENT PATIENT EDUCATION,  INCLUDING
 MULTILINGUAL  RESOURCES,  TO  ADDRESS  HEALTH LITERACY AND COMMUNICATION
 BARRIERS.
   4. DATA COLLECTION AND REPORTING. (A) THE DEPARTMENT SHALL COLLECT AND
 ANALYZE DATA FROM THE PROGRAM, INCLUDING BUT NOT LIMITED TO:
   (I) THE NUMBER OF INDIVIDUALS SCREENED;
   (II) DEMOGRAPHIC DATA OF PARTICIPANTS;
   (III) THE NUMBER AND TYPES OF DIAGNOSES MADE;
   (IV) REFERRALS TO SPECIALTY CARE;
   (V) ESTIMATED IMPACTS ON HEALTH OUTCOMES; AND
   (VI) POTENTIAL COST SAVINGS TO THE MEDICAID PROGRAM AND OTHER PAYORS.
   (B) ON OR BEFORE JANUARY FIRST, TWO THOUSAND  THIRTY,  THE  DEPARTMENT
 SHALL  SUBMIT  A WRITTEN REPORT TO THE GOVERNOR, THE TEMPORARY PRESIDENT
 OF THE SENATE, THE SPEAKER OF THE ASSEMBLY, AND THE CHAIRS OF THE HEALTH
 COMMITTEES OF THE SENATE AND ASSEMBLY. SUCH REPORT SHALL INCLUDE  RECOM-
 MENDATIONS  REGARDING  CONTINUATION,  EXPANSION,  OR MODIFICATION OF THE
 PROGRAM AND MAY INCLUDE A LEGISLATIVE PROPOSAL FOR ESTABLISHING A PERMA-
 NENT RKD SCREENING INITIATIVE STATEWIDE.
   5. DURATION AND FUNDING. THE PROGRAM  SHALL  COMMENCE  NO  LATER  THAN
 JANUARY  FIRST, TWO THOUSAND TWENTY-EIGHT, AND SHALL OPERATE UNTIL JANU-
 ARY FIRST, TWO THOUSAND THIRTY. FUNDS FOR THE IMPLEMENTATION AND  OPERA-
 TION  OF  THE PROGRAM MAY BE APPROPRIATED FROM ANY SOURCE MADE AVAILABLE
 FOR SUCH PURPOSE, INCLUDING BUT NOT  LIMITED  TO  STATE  APPROPRIATIONS,
 FEDERAL GRANTS, AND PUBLIC-PRIVATE PARTNERSHIPS.
   6.  RULES  AND  REGULATIONS.  THE  COMMISSIONER SHALL BE AUTHORIZED TO
 PROMULGATE ANY RULES  AND/OR  REGULATIONS  NECESSARY  TO  IMPLEMENT  THE
 PROVISIONS OF THIS SECTION.
   §  2.  This act shall take effect immediately and shall expire January
 31, 2030 when upon such date the provisions of this act shall be  deemed
 repealed.