Policy & Legislation

This month’s updates include a Sick Cells-coordinated Hill meeting in New York, an Ambassador Priority Topic Meeting on data advocacy, and one sign-on letter we supported.

Sick Cells has composed a community sign-on letter to various leaders in the House, Senate, Energy & Commerce Committee, and Ways & Means Committee to request an annual oversight hearing on the 2020 NASEM report on sickle cell disease. Sick Cells is grateful to the almost 40 partner organizations that signed on to this effort and are dedicated to amplifying the message and joining us in this request.

While all recipient names are included in this final version, separate letters were addressed and distributed to the House, Senate, and Committees.

This month’s highlights include Sick Cells resources used in SCDAA Advocacy Days, updates from Illinois & Texas Medicaid coverage meetings, an Ambassador Priority Topic Meeting with CAPT David Wong (OMH) as a guest speaker, and three sign-on letters we supported.

Our first policy memo highlights the Sick Cells-led Biden Administration letter, a summary of our FY22 federal appropriations request, our annual Ambassador Policy Forum & Hill Day, a Medicaid coverage meeting in D.C. and three sign-on letters we supported.

Sick Cells has composed a letter to the Biden Administration with the help of the sickle cell community. This letter highlights the policy priorities that the Biden Administration can prioritize in order to improve the lives of the sickle cell community and all people living with sickle cell disease. We look forward to working with the administration to transform health outcomes for sickle cell disease patients across the country.

The U.S. Department of Health & Human Services calls for equity-focused resource allocation and distribution in light of the current Covid-19 pandemic and the current scarcity of resource allocation. Read the full letter here.

Sick Cells is partnering with Sickle Cell 101 to ask the members of the SCD community to reach out to their congressmen to request funding for sickle cell in the 2021 fiscal year. Click here for a full summary of this movement as well as all the resources and tools you need to take part in #FundSickleCell.

Sick Cells released the paper “Traditional Value Assessment Methods Fail Communities of Color and Exacerbate Health Inequities” alongside National Minority Quality Forum, Axis Advocacy and PIPC. The diversity of America is not captured in traditional cost-effectiveness and value assessment. Read about the inherent bias and flaws of metrics.

The American Society of Hematology (ASH) and the Sickle Cell Disease Association of America, Inc. (SCDAA) led a sign-on letter to Congressional leaders, including Speaker Pelosi, Leader McConnell, Leader McCarthy, and Leader Schumer, to encourage the leaders to include an amendment to the COVID-19 stimulus bill to improve care for individuals with SCD. This request was for the stimulus bill to authorize the Centers for Medicare and Medicaid Services (CMS) to quickly develop a program for Medicare/Medicaid dual eligible and Medicaid beneficiaries to improve access to comprehensive outpatient care for individuals with SCD.

The ASP Coalition represents a broad cross-section of US health care providers and patient advocacy organizations. These entities are committed to advancing life-saving innovation in the US. Sick Cells is active with this coalition because nearly 13 percent of the sickle cell population use Medicare as part of their benefits.