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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February 2022 Policy Memo

This month’s highlights include updates from a listening session with the CMS Administrator, the release of our 2022 federal priorities, and more.

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January 2022 Policy Memo

This month’s highlights include information on our policy workgroups for the year and three sign-on letters we supported.

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January 2022 – Special Issue

SPECIAL MEMO: The purpose of this memo is to provide updates about the 2022 Sick Cells Ambassador Policy Forum.

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October & November 2021

Highlights from these two months include updates from a Wisconsin Medicaid coverage meeting and Ambassador Priority Topic Meetings focused on state legislation and working with the media.

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October 2021 Special Memo – Orphan Drug Tax Credit

SPECIAL MEMO: The purpose of this memo is to outline Sick Cells’ opposition to the proposed cuts to the Orphan Drug Tax Credit included in the Build Back Better Act of 2021.

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September 2021 Policy Memo

This month’s highlights include Medicaid coverage meetings in Minnesota and Pennsylvania, three sign-on letters we supported, and an Ambassador Priority Topic meeting about state legislation.

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August 2021 Policy Memo

This month’s highlights include follow-ups from Sick Cells’ Congressional Hearing Request and one sign-on letter we supported.

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July 2021 Policy Memo

This month’s highlights include updates from Sick Cells’ ongoing Hill meetings, notes on our participation in external policy meetings, and one sign-on letter we supported.

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June 2021 Policy Memo

This month’s highlights include the release of the Sick Cells-led Congressional Hearing Request, updates on a Wisconsin Medicaid coverage meeting, and two sign-on letters we supported.

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May 2021 Policy Memo

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.

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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

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.

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