Bill H.5086

FILED ON: 7/22/2022

HOUSE . . . . . . . . . . . . . . . No. 5086

The Commonwealth of Massachusetts

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In the One Hundred and Ninety-Second General Court
(2021-2022)

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An Act relative to sickle cell disease.

Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority of the same, as follows:

SECTION 1. (a) There is hereby established a special legislative commission pursuant to section 2A of chapter 4 of the General Laws to examine and make recommendations regarding Sickle Cell Disease in the Commonwealth.

(b) The Commission shall consist of the following 20 members: the house and senate chairs of the joint committee on public health or their designees, who shall serve as co-chairs; three members of the general public affected by Sickle Cell Disease, at least one of whom must have the disease and two of whom must be the parent of a child with the disease ; one medical professional from each of the major Sickle Cell Disease treatment centers in the Commonwealth, including Massachusetts General Hospital, Brigham and Women’s Hospital, Boston Medical Center, Boston Children’s Hospital, and University of Massachusetts Memorial Health Center; the Executive Director of the Greater Boston Sickle Cell Association or their designee; the Executive Director of the Massachusetts Association of Community Health Workers or their designee; the President of the Massachusetts Chapter of the National Association of Social Workers or their designee; two members appointed by the co-chairs, one of whom shall be an expert on the biology of the disease, and one of whom shall be an expert on the psycho-social aspect of the disease ; one member of the Black and Latino Caucus; one member of the Asian Caucus; and one representative appointed by the Governor with a background in racial health disparities. The co-chairs may appoint up to two additional members to fulfill the purpose and goals of the Commission.

Members of the special commission shall have evidence-based or lay knowledge, expertise or experience related to Sickle Cell Disease and racial health disparities and shall reflect broad racial and geographic diversity in the Commonwealth. All appointments shall be made not later than 30 days after the effective date of this act. The Commission shall convene its first meeting not later than 60 days after the effective date of this act.

(c) The Commission shall investigate and report on: (i) a standard of basic, multidisciplinary care for patients across the Commonwealth; (ii) the creation of a statewide resource website that would include disease information, information on how to access treatment centers and providers, listings of providers across the state representing multiple disciplines who have an expertise in the care of Sickle Cell Disease, a statewide hotline, and online communication options; (iii) the usage of Community-based Participatory Research to determine how many patients are living with Sickle Cell Disease, their level of access to medication, primary care, subspeciality care, morbidity and mortality rates, geographic distribution, access to transportation, other complications such as depression, anxiety, hypertension, low birth weight, infant mortality, heart disease, aging, advanced care planning, and any other information deemed important; (iv) resources for pediatric patients, including, but not limited to genetic counseling, family planning and childcare resources for schools; (v) forging partnerships by building relationships with other healthcare centers specializing in Sickle Cell Disease within New England, setting a standard for a national approach to Sickle Cell Disease care and identifying and seeking out federal resources and support; (vi) the creation of an awareness campaign, including, but not limited to an initiative to promote Sickle Cell Disease information, resources and philanthropic sourcing and guidance; (vii) the availability of mental health care related to the disease, including, but not limited to, expanding access to social workers in clinical settings and a community social work pilot program ; (viii) community care, including, but not limited to, expanding access to community health workers in culturally appropriate settings and crisis response teams for acute care and; (ix) any other factors that the commission considers relevant, including but not limited to housing access, transportation resources, and education programs for students with Sickle Cell Disease.

(d) No later than 1 year after the effective date of this act, the Commission shall submit a report of its findings and recommendations, together with drafts of legislation necessary to carry out those recommendations, to the secretary of health and human services, and file the same with the clerks of the house of representatives and the senate, the house and senate committees on ways and means, the joint committee on health care financing and the joint committee on public health. The commission shall also, at all meetings, provide updates on the status of its findings and recommendations.