Sick Cells and Avalere Health want to thank our Dialogue attendees for sharing so many interesting ideas which helped us create a Roadmap on how to advance care for individuals with SCD.

Read the Roadmap

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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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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Sickle Cell Treatment Act of 2018

Congress passed sickle cell disease legislation in 2018.  House Bill HR2410, the Sickle Cell Disease Treatment Act of 2017, was co-sponsored by Representatives Burgess and Davis. It passed the House in February while Sick Cells and 44 other sickle cell advocates were in Washington, DC. In February, Senators Scott and Booker introduced the Senate companion bill S.2465 the Sickle Cell Disease Treatment Act of 2018.

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Rare Disease Week

In 2018, Sick Cells worked with SCD volunteers to recruit and prepare over 40 SCD patient advocates who came to Washington, DC and lobbied for rare disease and sickle cell disease legislation. Sick Cells became active in rare disease week during 2018.

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Illinois Fair Care Coalition

The IL Fair Care Coalition is a group of patient advocacy organizations that work in a coalition to ensure access to medication for Illinoisans with disabilities. The coalition is led by the US Pain Foundation and worked to pass House Bill 4146. The bill ensures that individuals receive prescription drug coverage by limiting mid-year drug formulary changes by insurers. 

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CFF Letter to Senators to Protect Medicaid

Proposals to phase out Medicaid expansion and implement per capita caps or block grants, like those included in the American Health Care Act (AHCA), HR 1628, threaten the ability of Medicaid to provide critical health care services to many of our most vulnerable citizens. These proposals aim to achieve billions of dollars in cost savings at the expense of tens of millions of patients and consumers who rely on Medicaid for life-sustaining care. We vehemently oppose converting Medicaid’s financing into a capped funding structure, as well as phasing out Medicaid expansion, and will not accept any policy that cuts costs at the expense of patient and consumer access to care.

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