Budget Amendment ID: FY2023-S4-612-R1

Redraft EHS 612

Sickle Cell Anemia Study

Messrs. Collins and Crighton, Ms. DiZoglio, Mr. Brady, Ms. Lovely and Ms. Edwards moved that the proposed new text be amended by adding after section 56 the following section:-

“SECTION 56A. The executive office of health and human services shall study and publish a report on the needs of MassHealth enrollees with a diagnosis of sickle cell disease and the adequacy of available covered medications, treatments and health care services to meet those needs. The report shall include, but not be limited to, an examination of: (i) the extent to which health care transitional programs or services offered or covered by the division of medical assistance transfer and integrate children and young adults with a diagnosis of sickle cell disease into the adult care setting; (ii) the extent to which providers of emergency medical services to MassHealth enrollees are adequately trained and otherwise prepared to treat and manage enrollees with a diagnosis of sickle cell disease presenting with vaso-occlusive crises, including, but not limited to, the extent to which such providers follow clinically-validated algorithms and protocols regarding such treatment and management; and (iii) to the extent practicable, the number of enrollees with a diagnosis of sickle cell disease with 2 or more vaso-occlusive episode or pain crisis related hospitalizations or emergency department visits and the average length of stay for each such hospitalization or visit. The report shall also include a recommendation as to whether the division should seek to expand access to medication, treatment or health care services for MassHealth enrollees with a diagnosis of sickle cell disease and any other recommendations that would help address the unmet medical needs of such enrollees.

When conducting the study, the executive office shall solicit and consider input from the general public, with specific emphasis on receiving input from individuals diagnosed with sickle cell disease as well as persons or groups with knowledge, experience or specialized expertise in sickle cell disease treatment. The executive office shall hold at least 1 public hearing for the purpose of soliciting such input.

Not later than April 30, 2023, the executive office shall file the report with the clerks of the senate and house of representatives, the joint committee on health care financing and the senate and house committees on ways and means and the division shall make the report publicly available on the division’s website.”.