His story: Mathew Hsieh always liked blood—or at least the study of it. So during his fellowship training in hematology, he became easy friends with a researcher who was focusing on SCD. Hsieh decided it was a worthwhile pursuit and has dedicated most of his career to bridging the divide between researchers and the sickle cell patients they aim to help. As a staff clinician at the NIH Clinical Center, Hsieh attends scores of patients with SCD, helping pave the way for their enrollment in clinical trials focused on cutting-edge treatments such as gene therapy and bone marrow transplants. He is regarded as an exceptionally kind and compassionate advocate for patients who historically have been skeptical of the research community.
Secret for gaining patient trust: “It really does take time, so I take the time. I explain why we’re here, where we want to go, the benefits and risks, the research staff involved, why their participation is so important, and then I say, ‘Let’s talk about it.’ And we just talk.”
Why it’s worth it: “Many patients have gone through so many medical providers before seeing us, and they are very skeptical. But when they finally come around and tell their stories, good or bad—when they open up—that’s when I have the most joy.”
Biggest challenge: “As our program becomes more successful, lots more people are interested in participating, but we cannot grow as fast as the requests come in.”
His hope: “Sickle cell disease was discovered more than 100 years ago, and up to this day, there’s been only one approved drug to treat it, compared to at least a dozen drugs for comparable diseases…. But things are changing, and I’m very optimistic about a cure. Not only are more patients interested in participating in the studies, we’re starting to see more young trainees and multiple pharmaceuticals. The science is also very exciting. All the pieces are finally falling into place.”