The Bloodline Newsletter: Summer 2021
Mission: To improve quality of life, life expectancy, and health among people living with sickle cell disease (SCD).
Summer 2021 Issue
- CDC shared SCD camp counselor stories and information about SCD summer camps ahead of World Sickle Cell Day, which happened on June 19.
- During Sickle Cell Awareness Month in September, CDC shared resources on surveillance, stories from the SCD community, common complications of SCD, and more. Follow @CDC_NCBDDD on Twitter to stay updated.
- A new fact sheet, “5 Steps to Safer Blood Transfusions” was added to CDC’s “Steps to better health for people with sickle cell disease” toolkit. In addition, the toolkit is now available in Spanish.
- SCDC Indiana created a new plain language handout explaining the SCDC program, its purpose, and benefits to the SCD community. This resource was handed out during SCDC Indiana’s Sickle Cell Awareness Month activities.
- SCDC Michigan sent out the first issue of their Multidisciplinary Team Newsletter in July 2021. The newsletter includes updates on data, publications, communications activities, and more.
- SCDC California published a new data brief highlighting emergency department utilization among those with SCD in the state and factors that may be associated with higher utilization.
Trainings & Webinars
“Integrating Nutrition as a Management Option in Sickle Cell Disease: A Call to Action” (July 2021): Claudine Mathews, a health and wellbeing dietitian, presented an overview of existing scientific literature on the role of nutrition in SCD. She also shared new research perspectives to understand nutrition as a management option in sickle cell and the nutritional implications, problems, and management of SCD.
Wong TE, Valle J, Paulukonis S. Concurrent use of hydroxyurea and deferasirox in Californians with sickle cell disease. Health Sci Rep. 2021;4:e323. doi: 10.1002/hsr2.323.
In the Community
Members of the U.S. Senate, including those from SCDC states, provided signed support for implementing the Sickle Cell Research, Surveillance, Prevention, and Treatment Act. The legislation requested $25 million for the SCDC program in the FY2022 federal budget.
SCDC Georgia provided SCDC surveillance data to the following:
- A community clinic in Columbus, GA received prevalence, demographic, and utilization data on people with SCD in surrounding counties. These data will help the clinic assess the need for a dedicated SCD clinic to improve access to care for people with SCD who are uninsured or do not have regular care.
- A national community-based organization received prevalence data on people with SCD in Georgia, Metro Atlanta, and Gwinnett County to inform their outreach and support for families living with SCD.
SCDC California provided SCDC surveillance data to the following:
- SCD advocates used data to explore access to quality care in Los Angeles County. They also used preliminary data to support the development of an educational campaign so providers in emergency rooms can understand basic information about SCD.
- Katherine Cooney, a fellow at University of California San Francisco (Benioff Children’s Hospital) used California SCDC data to develop a pilot program to look at alternative payment models for Californians with SCD insured by Medi-Cal (Medicaid). This plan was presented to multiple policy audiences in California and at the SCDC program quarterly meeting.
Presentations & Meetings
- CDC provided updates on the SCDC program to the following:
- Foundation for Sickle Cell Disease Research annual meeting attendees (May 28, 2021)
- Sickle Cell Foundation of Georgia’s Board of Directors (June 10, 2021)
- Pacific Sickle Cell Regional Collaborative (September 1, 2021)
- Mary Hulihan (CDC) and Emily Meier (SCDC Indiana) presented information about SCD and SCDC to Indiana Medicaid’s Quality Group on June 29, 2021. Members of the group then shared information about those with SCD whom they serve and discussed ways to improve outreach and quality of care to these individuals moving forward.
- SCDC Georgia hosted its Stakeholder Advisory meeting on June 30, 2021, with participation from clinicians, community-based organizations, staff from the Georgia Department of Public Health, and public health experts. The group discussed data, research, and policy priorities for SCDC Georgia.
- SCDC North Carolina’s Advisory Council gathered for its first bi-annual meeting on June 30, 2021 to establish a communication plan with stakeholders and discuss prioritization of data analyses. Attendees included SCD researchers and clinicians, Sickle Cell Educator Counselors, representatives of the Governor’s NC Appointed Council on Sickle Cell Disease and Other Blood Disorders, people living with SCD and their family members.
- SCDC California presented at the National Heart, Lung, and Blood Institute’s Sickle Cell Disease Research meeting on August 18, 2021 as part of the National Alliance of Sickle Cell Centers Symposium. They presented data from the California program and examples of uses for the data, highlighting the importance of SCD surveillance in the absence of a registry.
- SCDC Georgia’s Dr. Angela Snyder presented surveillance data on people with SCD on August 19, 2021 at the Georgia State Capitol for the Georgia Sickle Cell Anemia Study Committee. Dr. Snyder shared healthcare utilization data (hospital admissions and emergency department visits) for patients receiving Medicaid. Her presentation highlighted access to care issues for people with SCD across the state.
- SCDC Principal Investigators of California, Georgia, and Michigan virtually presented, “Challenges and Opportunities in SCD Surveillance” during a meeting with the Texas Sickle Cell Task Force on August 20, 2021. The presentation covered the evolution of SCD surveillance in the United States, the importance of multi-source data for surveillance, description of the SCDC methodologies, and examples of uses for the surveillance data across states.
- Sickle Cell Foundation of Minnesota hosted the series, “SCD: A Public Health Emergency” throughout September. The following individuals presented on the SCDC program: Mary Hulihan; Beverley Francis-Gibson and Dr. Lewis Hsu (SCDAA); and Jay Desai and Jennifer Hauser (SCDC Minnesota).
- CDC held the SCDC program’s fourth quarterly meeting on September 9, 2021. The meeting covered policy and communications updates, community-based organization workgroup activities, optional and core component activities, and what’s ahead for the program.
- SCDC California’s Niani Coker and Susan Paulukonis presented SCDC data to the Cayenne Wellness Foundation Educational Symposium on September 16, 2021 as part of a panel on changing state policy on SCD.
- SCDC North Carolina participated in the Governor’s North Carolina Appointed Council on Sickle Cell Disease and Other Blood Disorders strategic planning meeting September 17−18, 2021.
In The News
This section is shared to provide awareness of articles on SCD currently presented in the media. Linking to a nonfederal site does not constitute an endorsement by CDC or any of its employees of the sponsors, information, and products presented on the site.
- Sickle cell research chair named for state Rep. Smyre threatened by budget squeeze (includes Georgia SCDC statistics presented by Dr. Angela Snyder to the legislative study committee)
- Longer hydroxyurea tied to improved sickle-cell heart issues
- I’m haunted by sisters with sickle cell: Two thrived. Two suffered.
- Pioneering gene therapy freed her of sickle cell. Is a cure at hand?
- Red Cross launches sickle cell initiative
- Helping those with sickle cell disease
- National Sickle Cell Awareness Month: Understanding the disease
- CRISPR: A guide to the health revolution that will define the 21st century
- Commentary: Black Breastfeeding Week: Sickle cell anemia disease and breastfeeding
- City of Charleston to proclaim September as Sickle Cell Awareness Month
- Physician use of stigmatizing language in patient medical records
- Overview of sickle cell disease
- Adolescents and young adults with sickle cell disease need standardized sexual and reproductive health counseling
- Living with sickle cell: ‘I don’t think anyone gets even 5% of what it means’
- Sickle cell disease may up risk for poor COVID-19 outcomes
- Continuity of sickle cell care could promote long-term retention in adult care
- Sickle cell disease tied to COVID-19 mortality, hospitalizations
- Commentary: Sickle cell disease and a pivotal moment to end health inequality
Stay tuned for a webinar about exercise and SCD in November hosted by SCDC California. Join the email list to receive announcements about upcoming webinars.