Sickle Cell Disease Comprehensive Care Act

(1) in subsection (a), by inserting (and, beginning January 1, 2025, to eligible individuals with sickle cell disease (as described under subsection (c)(5))) after chronic conditions; and

(2) in subsection (c)—

(A) in paragraph (1), by inserting and each eligible individual with sickle cell disease after chronic conditions; and

(B) by adding at the end the following new paragraph:; and

Beginning January 1, 2025, the Secretary may approve a State plan amendment under this section that is designed to provide health home services primarily to eligible individuals with sickle cell disease (in this section referred to as a sickle cell disease-focused State plan amendment).

In the case of a State with a sickle cell disease-focused State plan amendment, such State shall, at the end of the first 8 fiscal year quarters that such State plan amendment is in effect, submit to the Secretary a report on the following, with respect to eligible individuals with sickle cell disease provided health home services under such State plan amendment: For purposes of this subparagraph, the Secretary shall specify all applicable measures for determining quality, access, and expenditures.

(i) The quality of health care provided to such individuals, with a focus on outcomes relevant to the recovery of each such individual.

(ii) The access of such individuals to health care.

(iii) The total expenditures of such individuals for health care.

Not later than June 30, 2025, the Secretary shall make publicly available on the internet website of the Centers for Medicare & Medicaid Services best practices for designing and implementing a sickle cell disease-focused State plan amendment, based on clinical practice guidelines for sickle cell diseases developed by medical specialty societies and in consultation with sickle cell disease providers and patient advocacy organizations.

For purposes of this section:

The term eligible individual with sickle cell disease means, with respect to a State, an individual who satisfies all of the following:

(I) The individual is eligible for medical assistance under the State plan or under a waiver of such plan.

(II) The individual has sickle cell disease.

(III) The individual may or may not have previously received health home services under any other State plan amendment approved for the State under this section by the Secretary.

The term sickle cell disease means an inherited blood disorder affecting red blood cells that occurs when an individual has inherited a sickle cell gene from each parent, as identified by a newborn screening or other genetic test.

(3) in subsection (h)—

(A) in paragraph (4)(A)—

(i) by striking the period at the end and inserting; and;

(ii) by striking means comprehensive and inserting means—; and

(i) with respect to eligible individuals with chronic conditions, comprehensive

(iii) by adding at the end the following new clause:; and

(ii) in the case of a State that provides for dental services and vision services (as defined by such State), with respect to eligible individuals with sickle cell disease, the services described in clause (i), dental services, and vision services.

(B) in paragraph (5), by inserting or a health home for eligible individuals with sickle cell disease after chronic conditions.