Four decades ago, the life expectancy for a person with hemophilia—a rare disorder in which a person’s blood does not clot normally—was well below that of the general population.
Now, people diagnosed with hemophilia can expect to live a full life, thanks in part to the efforts of medical programs like the University of Minnesota Health Center for Bleeding and Clotting Disorders. Founded in 1977, the center provided highly specialized care for people with hemophilia and other rare bleeding disorders, and has served patients from across the upper Midwest and Canada.
Hematologist Mark Reding, MD, joined the center in 1999 and has served as its director since 2005. He’s overseen and guided the center through a variety of changes. This year, the center is celebrating its 40th anniversary.
We asked Reding to tell us more about the center’s history; the center’s comprehensive, lifelong care; medical advancements and the future of rare bleeding and clotting disorder treatment.
When the center started, we provided comprehensive, multidisciplinary care for patients throughout their lives. We developed that approach out of necessity—at the time, very few providers had any expertise in treating hemophilia patients. To some degree that’s why we are still focused on comprehensive care. You can’t necessarily go to any clinic in the community and find someone with expertise in bleeding and clotting disorders. At the center, however, our physicians and physician assistants, nurses, physical therapist, social worker, genetic counselor and pharmacist all have that expertise.
How has your treatment of patients with hemophilia changed over four decades?
The biggest change for people with hemophilia has come in bleeding prevention. In the 1970s—before the HIV epidemic—patients would give themselves regular infusions produced from human plasma to help their blood clot faster. These are known as clotting factor concentrates. Eventually, in response to the HIV outbreak, safer factor concentrates were introduced. Later, synthetic products were developed. From that time until 2014, treatment didn’t really change a whole lot. We got better at doing what we were doing, but no new therapies were available. That changed in 2014, when we saw the development of longer-lasting concentrates, which means our patients don’t have to treat themselves as often to prevent bleeds. That’s a huge advance for our patients. In addition, several new and even more promising treatments are in development and likely to be available in the near future.
What’s the future of the center look like?
Our goal is to help advance bleeding and clotting disorder care. One day, we hope people with hemophilia won’t experience bleeding episodes and therefore won’t have the long-term complications that have essentially defined this disease for decades. We’re not there yet, but future therapies will likely be much more effective at preventing bleeds. Researchers are pursuing gene therapy options that would allow us to potentially cure hemophilia, and give our patients a chance at a normal life without any bleeding. It’s not a clinical reality yet, but in the next 20 years it probably will be.
You’ve known some patients their entire lives — what’s that like?
That’s one of the things that really attracted me to this work. We have the opportunity to form long-term relationships with our patients. Together, we go through the ups and downs of life—even things unrelated to a patient’s bleeding or clotting disorder. We’ve known our patients for so long that we’re very connected to them beyond just their diagnosis.
How does that change how you treat them?
We form a much deeper relationship with our patients, which I think helps us take better care of their bleeding disorders. Our multidisciplinary team can partner with a patient for years or decades, which means we see their illnesses in a much different way. These diseases affect all aspects of a person’s life. For some of our patients, the actual bleeding isn’t the biggest challenge—it is all the other complications that come with the disorder. Fortunately, our center has the resources to address all of those issues.