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Policy & Legislation

The sickle cell community has historically been underrepresented
in policy and legislation.

Sick Cells is committed to educating the SCD community on policy advocacy
and incorporating the SCD voice into legislation. We partner with other sickle cell organizations and patient advocacy group to advocate for policies that allow people with SCD to access the high-quality, specialized care we need.

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June 2021 Policy Memo

Sick Cells is publishing Memos to keep you up to date with our policy priorities and explain what we’ve been focusing on. Check back for updates as we keep up our efforts to improve the policies that make a difference for the SCD community.

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May 2021 Policy Memo

Sick Cells is publishing Memos to keep you up to date with our policy priorities and explain what we’ve been focusing on. Check back for updates as we keep up our efforts to improve the policies that make a difference for the SCD community.

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2021 Congressional Hearing Request Letter

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.

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April 2021 Policy Memo

Sick Cells is publishing Memos to keep you up to date with our policy priorities and explain what we’ve been focusing on. Check back for updates as we keep up our efforts to improve the policies that make a difference for the SCD community.

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January-March 2021 Policy Memo

Sick Cells is publishing Memos to keep you up to date with our policy priorities and explain what we’ve been focusing on. Check back for updates as we keep up our efforts to improve the policies that make a difference for the SCD community.

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2021 Letter to the Biden Administration From the Sickle Cell Community

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.

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Equity in Allocation for COVID-19 Therapies Letter

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.

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Sickle Cell Appropriations Movement: #FundSickleCell

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.

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Sick Cells Co-authors Paper on Value Assessment Methods Exacerbating Health Inequities

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.

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Sick Cells Joins ASH and SCDAA Sign-On Letter During COVID Crisis

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.

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Part B Access for Seniors and Physicians (ASP) Coalition

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.

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