The Bloodline Newsletter: Fall 2019

The Bloodline. Sickle Cell Data Collection (SCDC) Program Quarterly Newsletter

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

Fall 2019

Communications Corner

Sickle Cell Has Many Faces video title screen

Trainings & Webinars

SCDC California’s webinars:

Unite SC: Collaboration and Community in Sickle Cellexternal icon” (September 2019): Dr. Nik Abdul Rashid and Ms. Linetta Barnes presented on how a clinical group and community-based organization in Nevada work together to improve care and quality of life for people living with SCD. Ms. Mary Brown and Ms. Jennifer Fields from the Sickle Cell Disease Foundation of California (SCDF) presented on how SCD data can help a community-based organization follow up with patients.

Adult Health Care for Sickle Cell Disease: How to Make it Betterexternal icon” (November 2019): A panel discussed the barriers and challenges with adult health care for SCD and how to overcome them. The panel included two clinicians, Natalie Merilus, RN, BS, and Ted Wun, MD; and an adult living with SCD, Kamilah Bailey.

Recent Publications

SCDC California worked with Mariam Kayle of Duke University to analyze data on the impact of the Affordable Care Act on Medicaid enrollment for those with SCD in California. SCDC California submitted this analysis to Pediatric Blood and Cancer.

Up-to-Data

SCDC Georgia’s 2010–2015 annual reports are now available.

SCDC website screen shot

Data to Action

  • SCDC Georgia provided a literature review about the costs of care for SCD to the Sickle Cell Foundation of Georgia, which the Foundation used to support discussions about the state’s 1115 Medicaid Waiver application.
  • SCDC Georgia responded to data requests from the Health Law Partnership, which is exploring a possible study with Children’s Healthcare of Atlanta to assess supplemental security income (SSI) eligibility criteria for children with SCD.
  • SCDC Georgia provided insights to Washington University in St. Louis on how to use medical claims data to build a retrospective cohort for researching academic support for youth with SCD.
  • SCDC Georgia partners, Dr. Jim Eckman and the Sickle Cell Foundation of Georgia, used local SCDC data as part of a SCD management training for clinic and health center primary care providers in Savannah.

Presentations & Meetings

  • SCDC California’s Susan Paulukonis presented “Older Adults with SCD” at the Sickle Cell Disease Association of America’s (SCDAA) Annual National Convention in Baltimore, MD, in October 2019.
  • CDC’s Mary Hulihan presented “Hospitalizations Among Older Adults with SCD” at SCDAA’s Annual National Convention in Baltimore, MD, in October 2019.
  • Bi-weekly sessions for the Capacity Building for SCD Surveillance project (DD19-1906) began on November 7, 2019. Learn more about this project here.
SCDC presentation screen shot

Contact

For any questions about the SCDC program, contact Mary Hulihan (ibx5@cdc.gov) or Mandip Kaur (wvx6@cdc.gov).

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