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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March 2023 Policy Memo

This month’s highlights include a recap of Rare Disease Week, the final report from the National SCD Policy Forum, and conversations with HHS and the CDC about the importance of data.

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February 2023 Policy Memo

With new legislators getting settled on the Hill, February brought a flurry of activity and opportunity. The Sick Cells team kept busy preparing for the National SCD Policy Forum (March 2023) and connecting with federal agencies and Hill offices to learn about their 2023 plans. This month’s highlights include the launch of event registration, two meetings with CMMI, an HHS event, and a few meetings on the Hill.

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January 2023 Policy Memo

This month’s highlights include an event announcement, meetings with CMMI and the E&C Committee, and more.

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December 2022 Policy Memo

This month’s highlights include working on wrapping up items from 2022 and planning exciting things for 2023.

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November 2022 Policy Memo

This month’s highlights include conversations with staffers, a Wisconsin Medicaid meeting, and an HHS roundtable.

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October 2022 Policy Memo

This month’s highlights include a meeting with AHRQ and prep work for a Medicaid coverage meeting.

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September 2022 Policy Memo

This month’s highlights include a visit to the Hill to introduce new legislation and meetings with two government agencies.

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August 2022 Policy Memo

This month’s highlights include our participation in a Tennessee P&T Meeting and the release of our Medicaid research final report.

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July 2022 Policy Memo

This month’s highlights include a meeting with HHS staff and an Ambassador Priority Topic Meeting on the advocacy of letter writing.

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June 2022 Policy Memo

This month’s highlights include a meeting with the HHS Office of Intergovernmental & External Affairs, a community workshop co-hosted with SCDAA, support of the Sickle Cell Care Expansion Act, and more!

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May 2022 Policy Memo

This month’s highlights include outreach to the Personalized Medicine Caucus, signing a letter of support for the Sickle Cell Disease Comprehensive Care Act, and an Ambassador Priority Topic Meeting on Advocacy in the ER.

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April 2022 Policy Memo

This month’s highlights include Sick Cells’ FY23 federal appropriations requests, our public comments on the 2022 CDC Clinical Practice Guideline for Prescribing Opioids, our Q1 Policy Debrief, and Medicaid coverage meetings in Oregon & Texas.

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