Bill Text: NY A06430 | 2021-2022 | General Assembly | Amended
Bill Title: Creates the sickle cell disease detection and education program.
Spectrum: Partisan Bill (Democrat 9-0)
Status: (Vetoed) 2022-11-23 - tabled [A06430 Detail]
Download: New_York-2021-A06430-Amended.html
STATE OF NEW YORK ________________________________________________________________________ 6430--B Cal. No. 210 2021-2022 Regular Sessions IN ASSEMBLY March 17, 2021 ___________ Introduced by M. of A. HYNDMAN, GALEF, DICKENS, PERRY, PAULIN, GLICK, JACKSON, SIMON, ANDERSON -- read once and referred to the Committee on Health -- reported and referred to the Committee on Ways and Means -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee -- ordered to a third reading, amended and ordered reprinted, retaining its place on the order of third read- ing AN ACT to amend the public health law, in relation to creating the sick- le cell disease detection and education program The People of the State of New York, represented in Senate and Assem- bly, do enact as follows: 1 Section 1. Article 24 of the public health law is amended by adding a 2 new title 1-C to read as follows: 3 TITLE I-C 4 SICKLE CELL DISEASE DETECTION AND EDUCATION PROGRAM 5 Section 2415. Sickle cell disease detection and education program; 6 establishment. 7 2416. Grants to approved organizations. 8 2417. Grants to community-based organizations. 9 2418. Annual report. 10 2419. Advisory council. 11 § 2415. Sickle cell disease detection and education program; estab- 12 lishment. 1. There is hereby created within the department the sickle 13 cell disease detection and education program, hereafter referred to in 14 this title as the "sickle cell disease services program" or "the 15 program", to promote screening and detection of sickle cell disease, 16 especially among unserved or underserved populations; to educate the 17 public regarding sickle cell disease and the benefits of early 18 detection; and to provide counseling and referral services. For purposes 19 of this title, "unserved or underserved populations" means people having 20 inadequate access and financial resources to obtain sickle cell disease EXPLANATION--Matter in italics (underscored) is new; matter in brackets [] is old law to be omitted. LBD08538-05-2A. 6430--B 2 1 screening and detection services, including people who lack health 2 coverage or whose health coverage is inadequate or who cannot meet the 3 financial requirements of their coverage for accessing detection 4 services. 5 2. The program shall include: 6 (a) establishment of a statewide public education and outreach 7 campaign to publicize evidence based sickle cell disease screening, 8 detection and education services. The campaign shall include: general 9 community education, outreach to specific underserved populations, 10 evidence based clinical sickle cell disease screening services, and an 11 informational summary that shall include an explanation of the impor- 12 tance of clinical examinations and what to expect during clinical exam- 13 inations and sickle cell disease screening services; 14 (b) provision of grants to approved organizations under sections twen- 15 ty-four hundred sixteen and twenty-four hundred seventeen of this title; 16 (c) compilation of data concerning the program and dissemination of 17 such data to the public; and 18 (d) development of health care professional education programs includ- 19 ing the benefits of early detection of sickle cell disease and clinical 20 examinations, the recommended frequency of clinical examinations and 21 sickle cell disease screening services, and professionally recognized 22 best practices guidelines. 23 § 2416. Grants to approved organizations. 1. The commissioner shall 24 make grants within the amounts appropriated to approved organizations 25 for the provision of services relating to the evidence based screening 26 and detection of sickle cell disease as part of this program. The 27 services shall include but not be limited to: 28 (a) promotion and provision of early detection of sickle cell disease, 29 including clinical examinations and sickle cell disease screening 30 services; 31 (b) provision of counseling and information on treatment options and 32 referral for appropriate medical treatment; 33 (c) dissemination of information to unserved and underserved popu- 34 lations, to the general public and to health care professionals concern- 35 ing sickle cell disease, the benefits of early detection and treatment, 36 and the availability of sickle cell disease screening services; 37 (d) identification of local sickle cell disease screening services 38 within the approved organization's region; 39 (e) provision of information, counseling and referral services to 40 individuals diagnosed with sickle cell disease; and 41 (f) provision of information regarding the availability of medical 42 assistance, including medical assistance under title eleven of article 43 five of the social services law, to an individual who requires treatment 44 for sickle cell disease. 45 2. The commissioner shall give notice and provide opportunity to 46 submit applications for grants under the program. In order to be consid- 47 ered for a grant, an applicant must show evidence of the following, 48 relating to the services the applicant proposes to provide: 49 (a) ability to provide and to ensure consistent and quality services 50 under the program; 51 (b) expertise in providing the service; 52 (c) capacity to coordinate services with physicians, hospitals and 53 other appropriate local institutions or agencies; 54 (d) ability to provide the service to unserved or underserved popu- 55 lations; andA. 6430--B 3 1 (e) ability to provide the service in accordance with the standards 2 specified in subdivision three of this section. 3 Applications shall be made on forms provided by the commissioner. 4 3. The commissioner shall develop standards for the implementation of 5 grants under the program by approved organizations, which shall ensure 6 the following: 7 (a) integration of the approved organization with existing health care 8 providers; 9 (b) maximizing third party reimbursement; 10 (c) provision of services to unserved or underserved populations. 11 4. Within the amounts of state or federal funds appropriated for the 12 program, approved organizations may be authorized by the department to 13 provide such services for populations served under this title. Services 14 may include evidence based screening, patient education, counseling, 15 follow-up and referral. 16 § 2417. Grants to community-based organizations. 1. The commissioner 17 shall make grants within amounts appropriated for community-based organ- 18 izations to provide post diagnosis counseling, education and outreach 19 programs for persons diagnosed with sickle cell disease based upon 20 criteria to be developed by the commissioner. 21 2. For the purposes of this section, "community-based organizations" 22 shall mean free-standing organizations in which sickle cell disease 23 survivors hold significant decision-making responsibility, and which 24 offer a broad range of sickle cell disease education and support 25 services free of charge. 26 3. The commissioner shall provide notice and opportunity for communi- 27 ty-based organizations to submit applications to provide post-diagnosis 28 sickle cell disease counseling, education and outreach programs. Such 29 applications shall be on forms established by the commissioner. 30 4. Every organization receiving grants under this title shall submit 31 to the commissioner, on or before October first of each year, a report 32 of such organization's activities, including an assessment of the organ- 33 ization's programs and such data as the commissioner deems relevant and 34 necessary to accomplish the purposes of the program. 35 § 2418. Annual report. The commissioner shall submit on or before 36 December first of each year, an annual report to the governor and the 37 legislature concerning the operation of the program. The reports shall 38 include the experience of the program in providing services under this 39 title. The annual report shall include strategies for implementation of 40 the sickle cell disease awareness program and for promoting the aware- 41 ness program to the general public, state and local elected officials, 42 and various public and private organizations, associations, businesses, 43 industries, and agencies. Organizations receiving grants under this 44 title shall provide data and assessments as the commissioner may require 45 for the report. The report shall include any recommendations for addi- 46 tional action to respond to the incidence of sickle cell disease in this 47 state. 48 § 2419. Advisory council. 1. There is hereby established in the 49 department the sickle cell disease detection and education program advi- 50 sory council, for the purpose of advising the commissioner with regard 51 to the program. 52 2. The advisory council shall advise and make recommendations to the 53 commissioner regarding the promotion and implementation of programs 54 under this title. 55 3. The commissioner shall appoint twenty-one voting members of the 56 advisory council, which shall include representation of health careA. 6430--B 4 1 professionals, consumers, patients, with one voting member who shall be 2 a person who has or has had sickle cell disease. The commissioner shall 3 appoint one member as a chairperson. The members of the council shall 4 receive no compensation for their services, but shall be allowed their 5 actual and necessary expenses incurred in performance of their duties. 6 4. A majority of the appointed voting membership of the board shall 7 constitute a quorum. 8 5. The advisory council shall meet at least twice a year, at the 9 request of the department. 10 § 2. Subdivision 1 of section 207 of the public health law is amended 11 by adding a new paragraph (q) to read as follows: 12 (q) sickle cell disease including but not limited to screening, 13 prevention, and treatment information. The program shall include an 14 advisory council under this section that shall include patients with 15 sickle cell disease and their families and health care providers 16 specializing in treating sickle cell disease, among others. 17 § 3. This act shall take effect immediately.
