October 2022 Policy Memo

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Memo: October 28, 2022

October is spooky season, but for us it’s just spooky how fast the year has flown by! Q4 is our time to start tying up our one-year projects and focus in on what can be done by the end of the year. This October, we’re gearing up to the midterm elections and continuing to conduct outreach related to current federal legislation. Our highlights below showcase where our focus was this month:

1. Sick Cells joined a meeting with key staff from the Agency for Healthcare Research and Quality (AHRQ).

a. The American Society of Hematology (ASH) circulated a sign-on letter in September encouraging federal leaders to include specific updates to their Medicaid Child Core Measure Set. According to ASH, these are:

i. NQF measure #2797:

1. “Assesses the percentage of children ages 2 through 15 years of age with sickle cell anemia who received at least one transcranial Doppler (TCD) ultrasonography screening within the measurement year.”

ii. NQF measure #3595:

1. “Assesses the percentage of children with SCD who were dispensed hydroxyurea for at least 300 days within the measurement year.”

2. Sick Cells prepared one advocate for an upcoming Medicaid coverage decision meeting

a. The meeting will occur on 11/2/2022 from 9am-3pm CT. For more information, visit the Wisconsin Medicaid website.

b. One advocate will provide oral comments at the meeting; Sick Cells will submit written testimony.

3. Sick Cells Ambassadors discussed “Measuring Value for Sickle Cell” at the October Priority Topic Meeting (PTM).

4. Additional updates:

a. The U.S. Food & Drug Administration (FDA) announced they are scheduling a Patient Listening Session for sickle cell disease for early 2023.

b. Sick Cells will be closed for the holidays on November 24 & 25, and will be closed from December 19 until January 2, 2023.

Please contact info@sickcells.org with questions.

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