Congressmen Dunn & Davis Unite to Advance Care for Patients with Sickle Cell Disease

WASHINGTON, DC - Today, Congressman Neal Dunn (Florida-02) and Congressman Danny K. Davis (Illinois-07) introduced the Sickle Cell Disease Comprehensive Care Act, legislation that would drastically improve the quality of care for patients living with sickle cell disease who rely on Medicaid for their health care. Currently, patients who are diagnosed with sickle cell disease are seeing their quality of life improve when they receive coordinated and comprehensive care. However, many do not receive the care that can enhance their quality of life and healthcare outcomes.

The Sickle Cell Disease Comprehensive Care Act would allow states to submit a State Plan Amendment (SPA) to establish Health Homes for patients with SCD as the single qualifying condition. Health Homes are a proven care delivery model in Medicaid that Congress has successfully expanded for other patients, like children with complex medical conditions.

"Patients living with sickle cell disease can see drastic improvement in their healthcare outcomes when they receive coordinated care by a connected team of providers. Unfortunately, many receive a patchwork of disorganized care that can lead to avoidable complications that impact their quality of life," said Congressman Dunn. "Coordinating care by establishing sickle cell disease health homes and streamlining care with a single team of providers will improve clinical outcomes for countless patients. Crucially, streamlining care for patients with sickle cell disease on Medicaid will also save the program money. I'm proud to join Congressman Davis in introducing this important legislation that will benefit Medicaid and the patients it serves."

"I want to thank Congressman Dunn who is my bipartisan partner in this effort to continue helping tens of thousands of Americans who suffer from this dreadful sickle cell disease. This legislation would allow state Medicaid programs to cover home health services and instruct the Centers for Medicare and Medicaid Services (CMS) to issue best known practices for states to advance comprehensive care to sickle cell warriors," said Congressman Davis.

"For the approximately 100,000 Americans living with sickle cell disease, access to comprehensive, high-quality care remains a critical yet sometimes unmet need, and we commend Representatives Dunn and Davis for their leadership and commitment to advancing legislation that seeks to close this gap," said Belinda Avalos, MD, President of the American Society of Hematology (ASH). "This bill seeks to improve outcomes for individuals with sickle cell disease who rely on Medicaid for their health care. If enacted, this bill would bring a new level of coordination to the specialized, primary, and preventive care they need to manage their condition and prevent debilitating pain crises. ASH looks forward to continuing to work with Representatives Dunn and Davis and other members of Congress to improve care for those living with this life-threatening disorder."

"The Sickle Cell Disease Association of America thanks Representatives Dunn and Davis for their leadership in introducing the Sickle Cell Disease Comprehensive Care Act. This bill would help to expand access to Medicaid health homes for individuals living with sickle cell disease. Access to quality, reliable healthcare is critical for the sickle cell community. SCDAA looks forward to working to advance this important legislation," said Regina Hartfield, President and CEO, Sickle Cell Disease Association of America, Inc.

"The Comprehensive Care Act moves sickle cell care from fragmented crisis response to coordinated, whole-person care - a long overdue shift that saves lives and restores dignity," said Maia Z. Laing, Chief Policy Officer, Sick Cells.

"The Sickle Cell Disease Partnership, a multi-sector public policy and advocacy alliance of individuals with SCD, patient advocacy organizations, clinicians, and others, applauds the bipartisan reintroduction of the Sickle Cell Disease Comprehensive Care Act in the House. Called for by state Medicaid directors to improve access to care and coverage for individuals with SCD, this legislation smartly builds on the existing Medicaid Health Home model that has been proven to create efficiency in care, reduce unnecessary expenditures, and improve health outcomes," said Josh Trent, CEO, Leavitt Partners and Advisor to the Sickle Cell Disease Partnership.

Background:

The Sickle Cell Disease Comprehensive Care Act would also ensure that patients receive coordinated care from a single "designated provider," which can be a physician, a team of professionals linked to a designated provider, or a community health team. Designated providers will provide comprehensive care management, care coordination, comprehensive transitional care, family support, and referrals to community and social support services.

States that establish a sickle cell disease health home will receive federal medical assistance percentage (FMAP) equal to 90% for eight fiscal quarters to provide medically necessary services to treat patients.

Out of all the rare blood disorders that are funded by the Department of Health and Human Services (HHS) and support groups, sickle cell disease receives the least funding. Passing the Sickle Cell Disease Comprehensive Care Act is an important step toward advancing innovative new therapies and medications for patients with rare blood disorders that will improve patient outcomes and put us on a path to a cure for sickle cell disease