Sickle cell experts say the future of a critical data collection program is in flux after staff at the CDC’s Division of Blood Disorders and Public Health Genomics were placed on administrative leave without a clear future plan.
(JHVEPhoto/Adobe Stock)
Sickle cell disease experts are worried that recent staffing changes at the Centers for Disease Control and Prevention will impact a program thatcollects dataabout the genetic disease and how it impacts more than 100,000 patients across the country.
In March, the Trump administrationannounced sweeping changesat the Department of Health and Human Services, including the U.S. Centers for Disease Control and Prevention. In a public post, HHS said that the move will streamline the department’s processes and save taxpayers $1.8 billion per year through downsizing the department’s workforce.
“We aren't just reducing bureaucratic sprawl. We are realigning the organization with its core mission and our new priorities in reversing the chronic disease epidemic,” HHS Secretary Robert F. Kennedy Jr. said, according to the statement. “This Department will do more – a lot more – at a lower cost to the taxpayer.”
Nearly all of the staff at the Division of Blood Disorders and Public Health Genomics at the CDC were placed on administrative leave, according to the National Bleeding Disorders Foundation and experts familiar with the division’s staff.
Doctors and public health experts say the division oversees programs that more than one million people in the U.S. with inherited bleeding disorders like thrombosis, thrombophilia, hemophilia, sickle cell disease and thalassemia rely on. They said the abrupt changes to the division happened without clear communication regarding plans for the future of the division’s programs.
The American Society of Hematology and 95 national and state organizations representing patients sent aletterto the HHS secretary urging him to reinstate the Division of Blood Disorders and Public Health Genomics.
The division has been at the helm of a 10-year-old program called theSickle Cell Disease Data Collection program, which aims to learn more about the disease’s patient population in a particular state, long-term treatment trends and access to care in order to raise awareness and direct health care resources and expertise where they are needed. The program started in 2015, and now has 16 participating states including Indiana, Missouri and Minnesota in the Midwest.
Sickle cell disease is a genetic blood disorder that mostly impacts Black and Hispanic Americans. It makes a patient’s blood cells change from the typical doughnut shape into the shape of a banana or a sickle, making it harder for the blood cells to carry oxygen and flow in vessels. The disease’s hallmark is chronic pain and unpredictable episodes commonly referred to as “pain crises”, which can send patients to hospital emergency rooms for urgent pain management. The disease can lead to tissue damage, stroke, organ failure and death.
For decades, sickle cell patients have faced adearth of specialistswho can provide specialized care for a disease that impacts most of the body's systems. Because of that, many resort to emergency departments, where they may not receive the care they need or are mistreated and accused of drug-seeking behavior.
“Because it's a rare disease, it really requires experts with a specific clinical experience and practice to be able to provide high level care,” said Dr. Emilie Meier, a pediatric hematologist-oncologist who cared for sickle cell patients in Indiana for more than seven years.
The data can help state health officials understand what areas of the state might need additional sickle cell disease health care support to ensure that all people with the disease are able to receive quality health care services, according to theCDC’s website.
“The American Society of Hematology is gravely concerned that the sweeping changes announced at HHS halt research progress and jeopardize care for patients with blood diseases,” said Belinda R. Avalos, the president of ASH, in a press release. “We must not lose the momentum of decades of progress in hematology.”
Avalos added that projects like the CDC’s Sickle Cell Data Collection program provide key insights into the care of individuals living with the rare disorder.
Meier said the Division of Blood Disorders at the CDC has been instrumental in getting the project off the ground and providing member states with the guidance and leadership needed to continue growing the project and expanding it to other states. She worries that the staffing changes and looming layoffs would mean an erosion of robust leadership for the project.
“I just think it's such a travesty that all of these years of work and expertise are just kind of thrown out the window,” Meier said. “I don't understand how the decision was made, why the division of blood disorders was one of the affected divisions. But it's really depressing.”
Side Effects Public Media is a health reporting collaboration based at WFYI in Indianapolis. We partner with NPR stations across the Midwest and surrounding areas — including KBIA and KCUR in Missouri, Iowa Public Radio, Ideastream in Ohio and WFPL in Kentucky.
