Sickle Cell Disease Partnership

The Partnership released three statements on the complementary pieces of Sickle Cell Disease legislation that were introduced or advanced in Congress during September, #SickleCellAwareness Month. The Partnership deeply appreciates the efforts being made by the Congressional sponsors to help establish comprehensive and equitable care and treatment for individuals with Sickle Cell Disease. To see the full statements on each piece of legislation, please visit: https://lnkd.in/e_JuiFzE

SCD Partnership advisors, Clay Alspach and Elizabeth Hassett, MPH, were thrilled to join U.S. Department of Health and Human Services (HHS) leadership, Partnership members, and representatives from across the SCD community at the inaugural HHS #SickleCellDisease Summit. In recognition of National #SickleCellAwareness Month, the Summit highlighted progress in SCD policy, emphasized continued work to achieve full and equitable care for individuals with SCD, and celebrated leaders in the SCD community.

The Sickle Cell Disease Partnership proudly celebrates the month of September, National Sickle Cell Awareness Month. Sickle Cell Disease (SCD) affects more than 100,000 people across the country, and more work remains to ensure individuals with SCD have timely, sustained access to high-quality, equitable, and coordinated care and treatment. The Partnership envisions a day when every individual with SCD in the United States lives a long and healthy life to their fullest potential. With improvements to SCD policies and programs, we are progressing towards that day, but we have far yet to go. This month we renew our focus and rededicate our efforts to doing our part to help bring that vision to reality. We are honored to work with leading SCD and health care organizations across the country in this work: American Academy of Pediatrics, American Society of Hematology, AmeriHealth Caritas, Beam Therapeutics, bluebird bio, CSL Behring B.V., Editas Medicine, Pfizer, Phillip Sanders Sr., SICKLE CELL CONSORTIUM, Sickle Cell Disease Association of America, Inc. — National, Sickle Cell Disease Foundation, Vertex Pharmaceuticals, Wunmi Bakare

🤝In recognition of World Sickle Cell Day today, the Partnership releases a report that assesses the progress made from 2022 to 2024 on the recommendations in the National Academies’ 2020 Report on SCD. 📈"Progressing Forward: Improvements to Access to Care and Treatment for Persons with SCD” examines actions taken by Congressional and Administration officials to improve SCD policy and programs since the Partnership’s founding. 👏While the Partnership is pleased to have played a role in advancing SCD policy, it recognizes and applauds the leadership of the Partnership’s member organizations and other leaders in the SCD community. ⭐️On World Sickle Cell Day 2024, we celebrate the successes, recognize the many contributors, highlight the progress still needed, and rededicate ourselves to collaborating to advance health care for Americans with SCD.

👏 The Partnership applauds Reps. Michael Burgess, MD, and Danny Davis for introducing H.R. 7432, The Sickle Cell Disease Comprehensive Care Act. Thanks to Reps. Brett Guthrie and Anna Eshoo for including the legislation in today’s legislative hearing at the House Committee on Energy and Commerce, Health Subcommittee. 🩸 Sickle cell disease is a rare blood disease that impacts 100,000 Americans. This legislation will help incentivize state Medicaid programs to provide coordinated care through Health Homes. Medicaid Health Homes are a proven successful model that have been used in dozens of states and have been shown to improve quality and outcomes while curbing unnecessary spending due to fragmented care. The Partnership looks forward to working with members of the House Committee on Energy and Commerce and other members of Congress to advance this important bill through the legislative process. E&C hearing details: https://lnkd.in/ejXQ_SbR