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April 2022 Policy Memo

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Memo: April 29, 2022

April showers bring May flowers…but they also bring blossoming opportunities for policy and advocacy! From conducting follow up related to our March Ambassador Policy Forum & Virtual Hill Day to helping advocates prepare public comments for a Medicaid DUR Board meeting, Sick Cells staff has started Q2 off strong. Here is what we were up to this month:

1. Sick Cells submitted FY23 federal appropriations requests to offices contacted as part of our Hill Day on March 23.

a. A summary of our requests can be found here.

2. Sick Cells submitted public comments to the Proposed 2022 CDC Clinical Practice Guideline for Prescribing Opioids

a. We were grateful to see the changes incorporated into the 2022 guidelines and shared three requests with the review committee:

i. The CDC should specifically request feedback from the SCD community

ii. The CDC should include the reasoning to exclude SCD

iii. The CDC should continue to underscore how provider bias impacts interpretation of the CDC guidelines

b. Read our full comments on our website here or on the CDC website here.

3. Sick Cells hosted our Q1 Policy Debrief on April 20, 2022

a. This 30-min event summarized our recent policy activity both at the state and federal levels, and outlined our focus for the rest of the year.

b. Watch the recording on our YouTube page here.

4. Ashley Valentine, Sick Cells Co-Founder & President spoke at a virtual briefing of the Congressional Personalized Medicine Caucus: Promoting Innovation and Delivery of Cell and Gene Therapies on April 28

a. Ashley’s comments centered around barriers faced by individuals with SCD and their families when accessing care, and how these barriers will impact the landscape of emerging gene therapies.

5. Sick Cells conducted outreach related to two Medicaid coverage decision committee meetings

a. Oregon (4/7/2022)

i. The committee reviewed all SCD treatments on the formulary

ii. Sick Cells conducted outreach to local organizations regarding the meeting

iii. Recommendations and final decision TBD.

b. Texas (4/22/2022)

i. The committee reviewed all SCD treatments on the formulary

ii. Sick Cells worked with two advocates to prepare to give public comments

iii. The committee recommended no changes to the formulary (all listed SCD drugs will be kept as “preferred,” no changes to prior authorization or step therapy requirements.) Adakveo remains unlisted.

6. This month’s Ambassador Priority Topic Meeting focused on the topic of Community Health Worker (CHW) Programs

a. Guest Speakers were: Jeanette Nu’Man, Director of Operations; Karen Schaack, Program Coordinator; Danina Battle, CHW Atlanta at the Sickle Cell Foundation of Georgia, Inc. They shared insight into their CHW Program and building capacity.

b. Other resources shared in the PTM include:

i. Living Well with Sickle Cell: Community Services for People with Sickle Cell – Sickle Cell Foundation of Georgia, Inc.

ii. Summary of Evidence for CHWs in Managed SCD Care – 2020 NASEM Report

iii. The Critical Role of CHWs in Access to Care for SCD – Avalon Health Economics & SCDAA (April 2022)

iv. Community Health Workers, Often Overlooked, Bring Trust to the Pandemic Fight – Kaiser Health News

v. Building A Community Health Worker Program: The Key to Better Care, Better Outcomes, and Lower Costs – CommunityHealth Works

vi. CHW Research Results from 50-State Medicaid Survey for 2021-2022 – Kaiser Family Foundation

Please contact info@sickcells.org with questions.

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