Sickle Cell Research Makes an Impact in California
For the estimated 100,000 people in the United States who suffer from sickle cell disease, living with this potentially deadly blood disorder is a daily challenge. The most common inherited blood disorder in the United States, sickle cell disease can cause debilitating pain, infection, stroke and organ damage. It can be a life-threatening condition with a 20–30 year lower life expectancy for people with the most severe form of the disease.
But in the fight against the disease, medical professionals have been hampered by a frustrating lack of data on how, when and where patients are accessing care. This lack of data is creating social, economic, cultural and geographic barriers to comprehensive care.
Now, an initiative called the Sickle Cell Data Collection (SCDC) program is working to fill those gaps. Formed through a partnership between the CDC Foundation, CDC’s Division of Blood Disorders, Tracking California and the Georgia Health Policy Center, the SCDC program is gathering the data needed to inform a comprehensive and uniform care routine for those living with sickle cell disease.
“There is very little data on treatment, mortality, outcomes or access to care,” said Susan Paulukonis, program director at Public Health Institute, which runs the Tracking California program. “We knew that if we wanted to look at the population as a whole, we needed to gather all of this data together.”
Launched in 2015, SCDC’s data collection work is already making an impact. In 2019, California authorized $15 million over three years to establish five new clinics in underserved areas around the state. The funds will also be used to offer incentives to hematologists and primary care doctors who specialize in sickle cell care and to train health workers statewide on the intricacies of SCD care.
“The data we gathered helped to inform that legislation, so we are proud of that,” Paulukonis said.
In California, SCDC is using data to understand how, when and where sickle cell disease patients seek emergency care, which can highlight gaps in the healthcare system. Through similar research in Georgia, SCDC is working with hospitals and health departments to identify areas with limited sickle cell disease specialist coverage and training healthcare providers in those areas on this specialized care. Data collected from both states will ultimately be used to inform lawmakers who can advance sickle cell disease funding, as they did in California.
Under a CDC grant announced in 2019, seven additional states will also be trained on sickle cell data collection, so researchers there can begin similar programs if funding becomes available. Though SCD has often flown under the radar of federal funding agencies and medical researchers, recent years have seen reinvigorated interest in the disease and an increased understanding of its impact. Partnering with CDC and the CDC Foundation has been instrumental in building a strong data collection system through SCDC, Paulukonis said.
“CDC has understood from the beginning how enormous the lack of data was for sickle cell compared to other diseases, so they have really led the charge working with the CDC Foundation,” Paulukonis said.
Having been involved with sickle cell research since 2006, Paulukonis said the work is particularly compelling because the disease presents significant preventable health problems that are largely unaddressed. While funding for sickle cell research remains limited, successes like those seen in California will help significantly in the fight against the disease.
“It would be a huge measure of success for us if 10 years from now we could say those born with sickle cell disease would experience the same life expectancy as the general population,” Paulukonis said. “And I would say it’s not out of the realm of possibility.”
The Sickle Cell Data Collection program is working with partners to build the framework for collecting data about individuals in the United States with sickle cell disease in order to monitor their health outcomes, evaluate current systems of care and inform the development of a comprehensive care model to meet the needs of these individuals throughout their life. The Sickle Cell Data Collection project is supported by the CDC Foundation through cooperative agreement 6NU38OT000288, funded by the Centers for Disease Control and Prevention (CDC), with additional support from the Doris Duke Charitable Foundation, Global Blood Therapeutics, Pfizer Inc., and Sanofi. The CDC Foundation’s support from CDC included full funding of $150,000.