The Bloodline Newsletter: April 2022

Mission: To improve quality of life, life expectancy, and health among people living with sickle cell disease (SCD).

April 2022 Issue

Communications Corner

• CDC’s “Steps to better health for people with sickle cell disease toolkit”, which includes downloadable fact sheets and social media resources about the common complications of SCD and how people living with SCD can manage their health, is now available in Spanish and French.
• SCDC Colorado conducted a short assessment to SCD stakeholders, including those living with SCD and their family members, healthcare providers, advocates, community-based organizations (CBOs), and policy makers. The purpose of the survey is to assess baseline knowledge about the epidemiology and healthcare utilization patterns of SCD. SCDC Colorado plans to administer the survey annually to guide communication, dissemination, and education efforts. Click here to complete the assessment if you live in Colorado.
• SCDC California worked with the California Department of Health’s Genetic Disease Screening Program and Sickle Cell Anemia Awareness San Francisco to send out a short survey in March 2022 to hematologists in the state about their care of people living with SCD. If you live in California and want more information on how healthcare providers can provide important input to the state, please contact info@TrackingCalifornia.org.
• SCDC Michigan sent out its most recent issue of the Multidisciplinary Team Newsletter in March 2022. The newsletter includes updates on data, publications, communications activities, and more. To subscribe, email Mary Robinson: RobinsonM31@michigan.gov.

Trainings & Webinars

• SCDC California hosted “Addressing school-related inequities for individuals living with SCD during the COVID-19 pandemic and beyond” in February 2022. Authors Kaitlin Murtagh and Trudy Tchume-Johnson from the Children’s Hospital of Philadelphia presented on building and supporting the academic and social competencies of students living with SCD.
• SCDC California will host the webinar “COVID-19 outcomes among individuals with sickle cell disease” on May 12, 2022, 2:30pm–4:00pm EST. The webinar will focus on the COVID-19 outcomes among people living with SCD compared to those who do not have SCD. Risk factors for severe COVID-19 illness for the SCD population will also be discussed. Register here.
• CDC and the American College of Emergency Physicians (ACEP) will co-host the webinar, “Breaking down barriers to emergency department (ED) care for people with SCD” on June 16, 2022, 2:00pm–3:00pm EST. The webinar will feature a panel of people living with SCD who share their experiences with care in the ED. Create an account here to register (ACEP membership not required). Registration is free but limited to the first 1,000 people.

Up-to-Data

SCDC Georgia responded to requests for SCDC surveillance data:

• An SCD CBO requested aggregate data of COVID-19 cases within the SCD population in Georgia. SCDC Georgia worked with the Georgia Department of Public Health (GDPH) and responded to this request. The CBO also requested results of a provider needs assessment [PDF – 2 pages] performed in 2013 regarding access to appropriate information for patients and providers on hydroxyurea, immunizations, and transcranial doppler screening.
• A clinical provider requested SCDC data on the percentage of ED and in-patient visits for Children’s Healthcare of Atlanta (CHOA) pediatric SCD patients in 14 metro counties between 2017 and 2019. This data will help providers understand how many pediatric SCD patients are captured by the CHOA database.

Presentations & Meetings

• Stakeholders from SCDC Georgia provided testimony to the Georgia Sickle Cell Anemia Study Committee during Summer and Fall of 2021. In December 2021, the Georgia State Senate released “The final report of the Senate Study Committee on sickle cell anemia [PDF – 7 pages].”
• SCDC Georgia hosted its Stakeholder Advisory meeting on February 27, 2022, with participation from clinicians, CBOs, staff from the GDPH, and public health experts. The group discussed data, research, and policy priorities including future analyses on topics such as telemedicine use by people with SCD before/during COVID-19 and exploring CDC’s Social Vulnerability Index within the Georgia SCD population.
• CDC held the SCDC program’s quarterly meeting on March 8, 2022. The meeting covered policy, communications, and CBO workgroup updates; the Social Vulnerability Index and SCDC; and publication overviews.
• CDC presented an overview of the SCDC program to the U.S. Department of Health and Human Services (HHS) SCD Interagency Workgroup on April 6, 2022.
• CDC presented an overview of the SCDC program to Adm. Rachel Levine, Assistant Secretary for Health for HHS, during her visit to the Atlanta campus on April 13, 2022.

In The News

This section is shared to provide awareness of articles on SCD currently presented in the media. Linking to a non-federal site does not constitute an endorsement by CDC or any of its employees of the sponsors, information, and products presented on the site.

• New gene therapy could provide cure for sickle cell disease, according to UAB study
• Are we about to cure sickle-cell disease?
• Black teen with sickle cell disease first gene therapy patient at Texas Medical Center
• The importance of donating blood in the Black community
• Sickle cell patients work to educate others about the disease
• Local mom with sickle cell disease says national blood shortage is ‘scary’
• Gene therapy shows promise as potential cure for sickle cell disease
• Katy teen becomes first sickle cell disease patient in Texas Medical Center to become her own donor
• For sickle cell warriors, battle never ends
• Why I started advocating for blood donations
• Most children not getting suggested treatments, screenings, study finds
• Medical interview: The blood crisis is a huge concern
• Blood vessel narrowing, reduced flow, may drive SCD pain crises
• ‘It saves lives’: Triangle Red Cross in need of blood donations for sickle cell patients

Announcements

• The Office of Management and Budget recently released the FY23 President’s Budget request for the US Government. Although this document is not intended to provide program level budget detail, it does mention “…to advance health equity, the Budget invests in CDC programs related to viral hepatitis, youth mental health, and sickle cell disease.” Congress will still need to pass a budget before we know the actual appropriated funding levels for the upcoming fiscal year.
• The CDC FY23 congressional justification (CJ) [PDF – 565 pages]is now live on the web and includes a proposed budget increase to the SCDC program. A breakdown of the funding lines can be viewed in CDC’s FY23 budget detail table. Additionally, the FY23 CJ [PDF – 565 pages] on page 548 is CDC’s response to language in House Report 117-96 [PDF – 524 pages], page 93 on CDC’s SCD surveillance program. In the “Action taken or to be taken section,” CDC indicates the FY21 status of the program, how CDC would use funds proposed in the FY22 House report, and how CDC would use funds proposed by the FY23 president’s budget.

The Michigan Department of Health and Human Services:

• Released its Fiscal Years 2023–2027 Strategic Plan, [PDF – 4 pages] including a public health investment for SCD: “Assure sickle cell disease newly funded activities are appropriated to accomplish their intended purpose.” SCDC data will be used to support this investment and to help with its evaluation.
• Expands coverage to adults with sickle cell disease. SCDC Michigan received additional funds to use SCDC data to help identify people living with SCD in Michigan newly eligible for these expanded benefits.

Contact

For any questions about the SCDC program, contact Mary Hulihan or Mandip Kaur.

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