Sickle Cell Disease

Policy Recommendations for Sickle Cell Disease

  • Support the “Sickle Cell Disease Treatment Centers Act of 2022” that would fund treatment centers for people with sickle cell disease, while also funding hospitals that provide specialized care for patients with this disease.
  • Support the bill titled “Sickle Cell Disease Comprehensive Care Act” that would provide better access to nonemergency services for people living with Sickle Cell Disease.
  • Increase access to chronic pain management services, especially those supported by CMS (Centers for Medicare and Medicaid Services), helping patients with sickle cell disease receive holistic chronic pain care.
  • Increase access to innovative therapies for Sickle Cell Disease, specifically those developed using the Cell and Gene Therapy Access Model. This model would establish partnerships between CMS, manufacturers and state Medicaid agencies to help Sickle Cell patients with Medicaid gain access to potentially life changing, high cost treatment.
  • Promote awareness to patients with Sickle Cell Disease of promising therapies that are covered under Medicare who participate in approved clinical studies.
  • Support funding for researchers to explore gene therapies to identify new treatments or a cure for Sickle Cell Disease.
  • Support and promote the 18 recommendations developed by the American Society of Hematology to address the broad array of acute and chronic pain symptoms experienced by people with Sickle Cell Disease.
  • Continue to support funding to assess quality of care among people with Sickle Cell Disease.
  • Promote funding to identify and mitigate racial/ethnic disparities among people with Sickle Cell Disease.
    • Here are public figures with Sickle Cell Disease or the Sickle cell trait.

References

Survey