Sickle Cell Data Collection program to continue key initiatives with $2.5M funding increase
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Sickle cell disease affects about 100,000 people in the United States, but the exact incidence is unknown and rates vary from state to state.
Much remains to be learned about sickle cell disease, including how patients access the health care system and social determinants that may impact outcomes. Additionally, people with this disease are now living longer and, as a result, face other age-related health problems and potential long-term complications.
To better understand this inherited blood disease, the CDC established the Sickle Cell Data Collection (SCDC) program, which gathers data on the complications, treatments, health outcomes and health access of individuals with sickle cell disease in 11 states. President Joe Biden’s proposed federal budget for the 2023 fiscal year included a request for a $2.5 million increase to fund the SCDC program compared with the amount committed to the program in fiscal year 2022.
Mary Hulihan, DrPH, health scientist in the epidemiology and surveillance branch of the division of blood disorders at CDC’s National Center on Birth Defects and Developmental Disabilities, spoke with Healio about the need for ongoing sickle cell disease surveillance, the potential value of data being collected through the SCDC program, and the commitment of the Biden administration to this cause.
Healio: How did the SCDC program come about?
Hulihan: The SCDC program builds on previous sickle cell disease surveillance carried out under the CDC and NHLBI’s Registry and Surveillance System for Hemoglobinopathies (RuSH) pilot project and the CDC’s Public Health Research, Epidemiology, and Surveillance in Hemoglobinopathies (PHRESH) initiative.
Healio: How can the program help to improve access to care for people with sickle cell disease?
Hulihan: The SCDC program can be used to develop maps that show where people with sickle cell disease live and where health care providers or facilities are located. These maps can help identify the geographic challenges patients with sickle cell disease face in accessing care and address disparities and inequities. Specific questions regarding patient location that can be answered with SCDC data include the following:
- Where (by city or ZIP code) are people with sickle cell disease located?
- Which facilities are seeing people with sickle cell disease and in what setting (eg, county hospitals vs. private hospitals, ED vs. outpatient clinics)?
- Are people being seen in multiple care facilities?
- Are there nearby sickle cell treatment centers that may better serve these patients?
- What are the target areas for sickle cell disease outreach?
- What are the differences in access to care by distance across different locations, and how does this differ by age and health insurance?
- How does availability of transportation impact access to care?
- How do environmental factors impact patient health and outcomes?
Healio: What kinds of symptoms and increased health care utilization occur during the transition from pediatric to adult care?
Hulihan: During this transition, people with sickle cell disease often experience more frequent complications related to the disease. Teens and young adults with sickle cell disease have more frequent pain episodes, chronic pain and avascular necrosis, in particular, than younger children with sickle cell. These changes are likely due to multiple factors, including a decrease in close medical follow-up and preventive care due to psychosocial factors, disease progression and access-to-care issues.
Healio: How does the program help address the challenge of identifying Hispanic people with sickle cell disease?
Hulihan: CDC research has shown that one in 10 people with sickle cell disease in the United States are Hispanic. SCDC information can shed light on the challenges of identifying sickle cell disease among Hispanics, which includes those born outside of the U.S. Coding of race and ethnicity in administrative and even clinic and newborn screening data can be inconsistent, which adds to the complexity of this task.
Healio: Why is it important to collect data on common comorbidities among older people with sickle cell disease?
Hulihan: People with sickle cell disease are living longer, making it more important to use SCDC information to study common health problems — not just those related to sickle cell disease — that people experience as they age. A research study showed most older people who received care at a sickle cell disease clinic did not undergo routine cancer screenings and that a high number had comorbidities, such as hypertension and diabetes, and early-onset complications, such as chronic renal disease, iron overload and cardiovascular disease. SCDC can provide important data for health care providers on how comorbidities might differentially impact people with sickle cell disease; improve the ability to identify and follow these older people using administrative data; and improve and expand standards of care.
Healio: How has the program helped gather information about use of health care services, such as EDs, by patients with sickle cell disease?
Hulihan: SCDC is uniquely able to identify health care utilization patterns among people living with sickle cell disease, including use of hospital, ED and outpatient services, and to look for patterns of utilization over time. Additionally, the surveillance system has the capacity to look at events or complications that precede and succeed periods of high utilization. Among the changes in policy, practice and outcomes that may result from this work are a greater understanding of the factors that trigger periods of high health care utilization, as well as the strategies needed to prevent the complications that lead to an increase in use of health care services.
SCDC data can be used to increase education of ED providers on the importance of timely and adequate relief for sickle cell pain crises to prevent readmissions and for post-ED follow up. It can also be used for workforce development efforts to increase the availability of knowledgeable and trained providers to help ensure that patients with sickle cell disease have adequate access to outpatient and preventive services. SCDC data can also be used to look at changes in health care utilization, including the use of telemedicine during the COVID-19 pandemic.
Healio: How will the funding increase proposed in the president’s fiscal year 2023 budget help improve the SCDC program?
Hulihan: With the additional $2.5 million, CDC plans to continue certain activities such as expanding data collection and analysis to address important issues such as pregnancy-related death; exploring key data modernization initiatives to make data more accessible; and improving science and program support activities such as project management, subject matter expertise in epidemiology, health communications and science translation. Adding additional states to the SCDC network would be an impactful step to strengthen the foundation for multisector initiatives for sickle cell disease.
References:
CDC. Centers for Disease Control and Prevention FY 2023 president’s budget. https://www.cdc.gov/budget/documents/fy2023/FY-2023-CDC-Budget-Detail.pdf. Published March 28, 2022. Accessed May 6, 2022.
CDC. FY 2023 congressional justification. https://www.cdc.gov/budget/fy2023/congressional-justification.html. Published: March 28, 2022. Accessed: May 6, 2022.
CDC. Sickle cell disease research. https://www.cdc.gov/ncbddd/hemoglobinopathies/data-reports/2018-summer/priorities.html. Published: Feb. 2, 2021. Accessed: May 6, 2022.
For more information:
Mary Hulihan, DrPH, can be reached at Centers for Disease Control and Prevention, 1600 Clifton Road, MS E64, Atlanta, GA 30320; email: ibx5@cdc.gov.
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