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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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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Comments on CDC Opioid Guidelines

Sick Cells submitted a letter to the CDC with our comments on the proposed 2022 CDC Opioid Prescription Guidelines.

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March 2022 Policy Memo

This month’s highlights include Sick Cells’ annual Ambassador Policy Forum & Hill Day, the release of our new Medicaid Engagement White Paper, and updates from a Florida Medicaid coverage meeting.

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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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