For more than 50 years a small team at the Centers for Disease Control and Prevention has helped protect Americans living with hemophilia and other inherited blood disorders. Its work rarely makes headlines. But for families who depend on safe treatment, accurate diagnosis, reliable public health data and evidence-based care it can be lifesaving.
Today that infrastructure is at risk.
The Division of Blood Disorders and Public Health Genomics within CDC’s National Center on Birth Defects and Developmental Disabilities has served as a federal hub for understanding blood disorders, preventing complications and improving access to high-quality care. Its history also carries an important lesson about what happens when our nation fails to adequately protect people who rely on blood-derived treatments.
During the AIDS crisis approximately nine out of 10 people with severe hemophilia were infected with HIV through contaminated blood products. Thousands were also exposed to viral hepatitis. The consequences devastated an entire generation of families in the bleeding disorders community.
Congress responded. In 1983 it appropriated funding for CDC to provide AIDS risk-reduction services for people with hemophilia and others who relied on blood-based treatment products. Subsequent federal investments helped establish surveillance systems capable of tracking the health of people with hemophilia and identifying illnesses, complications and deaths.
That work produced knowledge that changed care.
CDC research found that roughly two-thirds of people with hemophilia received care through federally supported hemophilia treatment centers, and that receiving care through these specialized centers was associated with substantially better survival. The comprehensive hemophilia treatment center model became so successful that it helped provide a blueprint for improving care for other rare blood disorders.
The surveillance system built alongside that network also enabled CDC to monitor HIV and viral hepatitis among people with hemophilia — giving the federal government another important window into the safety of the nation’s blood supply.
This is what effective public health infrastructure looks like: collect data, identify risks, translate evidence into better care and prevent the same tragedies from happening again.
And its reach extends far beyond hemophilia.
Heritable blood disorders collectively affect millions of Americans. Von Willebrand disease alone is estimated to affect as much as 1% of the US population – around 3 million Americans. The Division’s work also supports people affected by sickle cell disease, thalassemia, clotting disorders and other rare bleeding and blood disorders. Many complications associated with these conditions can be prevented or reduced through early identification, specialized treatment and evidence-based care. When they are not, the human consequences can be devastating and the costs to the health care system can soar.
Remarkably, this national work has been driven by a relatively small federal staff working in close coordination with hemophilia treatment centers, health departments, researchers, clinicians and patient organizations across the country.
But following recent reductions in force affecting CDC, the leadership and staff responsible for carrying out these activities are no longer in place. Career staff have been placed on administrative leave, even as many stand ready and eager to return to their jobs.
The result is not simply a change to an organizational chart.
Congressionally funded and statutorily directed programs have been disrupted, and essential functions of the Division have effectively become inoperable.
Consider inhibitor testing.
Some people with hemophilia develop an immune response known as an inhibitor, in which the body attacks or neutralizes the treatment intended to control their bleeding. Inhibitors can affect a significant proportion of people with severe hemophilia and can make routine treatment more complicated. CDC’s specialized laboratory capacity has provided critical testing and expertise that may not be readily available at every hemophilia treatment center.
Without appropriate testing, an inhibitor can go undetected. A patient may continue receiving treatment that is no longer working as expected, increasing the risk of preventable bleeding, joint damage, disability and potentially life-threatening complications. The financial consequences are significant as well: care for patients with inhibitors can cost multiples of standard hemophilia care.
The division performs another function that is less visible but equally important: turning information collected across communities into knowledge that benefits patients everywhere.
State, local and regional partners collect critical data on bleeding disorders, sickle cell disease, thalassemia, venous thromboembolism and other blood disorders. Federal experts coordinate and analyze the data, identifying trends and translating findings into public health information and evidence that clinicians, researchers and communities can use.
Without the specialized federal staff who perform that work, information can remain fragmented. Partners may continue doing important work locally, but the national infrastructure that transforms those individual efforts into population-level knowledge is diminished.
That should concern every taxpayer, not only families affected by blood disorders.
Public health surveillance and prevention are investments precisely because they allow us to identify problems before they become more dangerous and more expensive. Preventing a serious complication is better for a patient and generally far less costly than treating hospitalization, disability and long-term health consequences that follow.
The bleeding disorders community learned this lesson at an unbearable cost during the HIV/AIDS crisis. We should not have to learn it again.
Over the past several months, patient advocacy organizations representing people with rare blood disorders have joined with the American Society of Hematology and other partners in urging Congress to protect these programs. Our message is straightforward: specialized public health expertise built over decades cannot simply be switched off without consequences.
Congress should act now to restore the staff and programs of the Division of Blood Disorders and Public Health Genomics and ensure that the National Center on Birth Defects and Developmental Disabilities is fully funded in fiscal year 2027.
This is not about preserving bureaucracy for bureaucracy’s sake. It is about preserving a public health system that detects threats, prevents avoidable complications, strengthens specialized care and gives patients and clinicians the evidence they need to make better decisions.
Fifty years of expertise, partnerships and patient data have created an infrastructure that has helped Americans with blood disorders live longer and healthier lives.
We should strengthen that legacy — not dismantle it.
– Mary Catherine Moffett
Mary Catherine Moffett is HFA’s Vice President for Policy & Advocacy
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