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2026 Session

Budget Amendments - HB30 (Member Request)

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Chief Patron: Hayes
Medicaid & CHIP Participation in Cell & Gene Therapy Access Model for Sickle Cell Disease Treatment

Item 291 #2h

Item 291 #2h

First Year - FY2027 Second Year - FY2028
Health and Human Resources
Department of Medical Assistance Services FY2027 $3,496,496 FY2028 $3,490,689 GF
FY2027 $3,940,205 FY2028 $3,871,012 NGF

Language
Page 334, line 48, strike "$28,934,352,589" and insert "$28,941,789,290".
Page 334, line 48, strike "$30,476,743,886" and insert "$30,484,105,587".

Page 370, after line 8, insert:

"QQQQQ.1. Effective July 1, 2026,  the Department of Medical Assistance Services shall seek any necessary waivers and/or State Plan for Medical Assistance amendments under Titles XIX and XXI of the Social Security Act to provide coverage for sickle cell treatments for Medicaid enrollees through the Cell and Gene Therapy Access Model in partnership with the federal Centers for Medicare and Medicaid. The department shall have the authority to implement these changes upon federal approval and prior to completion of any regulatory process undertaken in order to effect such change.

2. The Department of Medical Assistance Services shall have the authority to separate the cost of a sickle cell disease drug from the cost to administer the drug for the purposes of participating in the Cell and Gene Therapy Access Model."



Explanation

(This amendment adds funding and language to add Medicaid, Medicaid Children's Health Insurance Program (M-CHIP) and Family Access to Medical Insurance Security (FAMIS) coverage for sickle cell treatments through a specific model of care in partnership with the federal Centers for Medicare and Medicaid (CMS). In 2025, CMS announced that 33 states, along with the District of Columbia and Puerto Rico, will be participating in the Cell and Gene Therapy (CGT) Access Model, including Virginia. The initial focus of the model is on access to gene therapy treatments for people living with sickle cell disease, a genetic blood disorder. The Cell and Gene Therapy (CGT) Access Model aims to improve the lives of people living with rare and severe diseases by increasing access to potentially transformative treatments. It is a multi-year, voluntary model for states and manufacturers to test whether a CMS-led approach to developing and administering outcomes-based agreements (OBAs) for cell and gene therapies increases Medicaid beneficiaries’ access to innovative treatment, improves their health outcomes, and reduces health care costs and burden to state Medicaid programs. Language also provides the agency with authority to unbundle the cost of the drugs from the cost of administer the drugs.)