The future of blood safety: Shanthi Hegde advocates for federal oversight in Washington

You are living with multiple rare and ultra-rare bleeding disorders that many people are unfamiliar with. Could you describe what it's like living with these disorders and how you were diagnosed?

Living with multiple rare and ultra-rare bleeding disorders really means that everything in my life has to be planned around them. I have two congenital bleeding disorders—one ultra-rare and one somewhat more common—and the combination is extremely rare. Because they’re genetic, I’ve had them my whole life, and I’m on continuous prophylaxis treatment to prevent bleeding. I also treat on demand if I have a severe bleed.

Getting to this point was a long journey. Growing up in northern Georgia, I wasn’t taken seriously. I bruised constantly, I bled easily, and I had periods that lasted six to eight months straight—but no one could tell me why. It wasn’t until I moved to Boston and ended up in Harvard Medical School’s hospital system that someone finally realized what was going on. I was diagnosed right before my sophomore year at Northeastern, after 19 years of unchecked bleeding and no treatment. By then, I had already developed joint and muscle damage from repeated bleeds.

Being a woman and a woman of color added another layer of difficulty. Bruising looks different on brown skin, and many providers aren’t trained to recognize that, especially with a condition this rare. I often felt like I had to “prove” my symptoms or even apologize for my skin tone, which took an emotional toll.

On top of the bleeding disorders, I also have a rare autoimmune condition that requires daily injections. Those injections themselves can cause muscle bleeds and bruising. All of this means I’ve had to miss a lot of school, tightly schedule my week around infusions and make regular trips to Boston—sometimes going from class, to the train, to the hospital and back for another class in the afternoon.

There are physical limitations too: no contact sports, no running. Sometimes even a brisk walk can trigger a bleed. My conditions influence which jobs I can take because of insurance (which is a huge barrier), where I live, and where I could realistically attend graduate school. I’m incredibly grateful to be at Brown, but that decision also depended on having the right providers nearby and being able to maintain an emergency plan.

Can you explain why you spend much of your time at Brown and outside of Brown working on advocacy issues for the blood disorder community?   

Anyone from the previous generation of people with bleeding disorders grew up knowing that safety wasn’t guaranteed. Ryan White is probably the most famous example. Most people know his name, but not everyone realizes he had hemophilia and contracted HIV from his blood product. Ricky Ray is another critical figure. The Ricky Ray Act established one of the largest legislatively mandated compensation programs in U.S. history, providing support to people with hemophilia who contracted HIV, AIDS, hepatitis C, and other blood-borne infections from contaminated clotting factor that was inadequately regulated.

Their legacies stay with me and are a huge part of why I show up on Capitol Hill. They show that young people with bleeding disorders have shaped public policy before, and we can do it again.

My generation has been fortunate to grow up without the constant fear that earlier generations lived through. But with the current administration, some of those fears are resurfacing. Cuts to the surveillance system, combined with the reality that blood safety is still fragile, mean we need real oversight.

What concerns did you raise with legislators about the CDC layoffs, and how were they received?

Our main message was the impact of the CDC Division of Blood Disorders layoffs, which eliminated the only independent, population-level surveillance system for rare blood disorders. Many offices were unaware of how extensive the layoffs were, which was very concerning. All but two staff were placed on administrative leave, resulting in the loss of institutional knowledge and productivity due to functionally inoperable databases and data visualization.

Offices often expressed surprise and requested supporting documentation, which we provided. It all highlighted a significant awareness gap around our national blood-safety infrastructure and federal support over the past 50 years for bleeding-disorders patients through the CDC’s division and landmark legislation, including the Hemophilia Act of 1973.

We also discussed how blood surveillance gaps created by the layoffs are a concern for all Americans, not just those with bleeding disorders, and how the layoffs have halted federal tracking of “inhibitors,” one the most serious complications of bleeding disorders and can cost families over $300,000 a month to treat. Federal monitoring that could spot safety problems across different products and batches, especially for simultaneous infections like HIV, hepatitis B and C, HTLV, and parvovirus B19, has also been halted.

What do you think the public misunderstands most about the fragility of the blood safety system?

The biggest misunderstanding is the belief that blood safety is a niche issue that only affects people with rare bleeding disorders. In reality, the U.S. blood supply supports millions of patients every year—people with sickle cell disease, cancer, traumatic injuries, severe anemia, inflammatory bowel disease, immunocompromised patients and mothers experiencing postpartum hemorrhage. Blood safety is fundamentally a maternal health and child health issue, and postpartum hemorrhage remains a major driver of Black maternal mortality.

Another misconception, especially among legislators, is that someone else can monitor blood safety. History gives the clearest answer: When private manufacturers oversaw safety in the 1970s–1990s, pooled plasma products were made from tens of thousands of donations, and companies were aware of emerging viral risks and high-risk donor pools, yet they failed to act quickly or transparently. With no independent federal surveillance, thousands of people with hemophilia were infected with HIV and hepatitis C before the danger was fully acknowledged.

Without independent federal monitoring, the same conditions that allowed the HIV/Hep C contamination crisis could be recreated—and history shows that the cost of such failures is measured in human lives.