HL20: Douglas Dieterich, MD—Winning a Grudge Match With Hepatitis C

In our annual HealthLeaders 20, we profile individuals who are changing healthcare for the better. Some are longtime industry fixtures; others would clearly be considered outsiders. Some are revered; others would not win many popularity contests. All of them are playing a crucial role in making the healthcare industry better. This is the story of Douglas Dieterich, MD.

This profile was published in the December, 2012 issue of HealthLeaders magazine.

 "It was a time of great uncertainty about [hepatitis C] and how it was spread and many were refusing to take care of people with this or HIV, which I really thought was unethical."

Ask why Douglas Dieterich, MD, decided he wanted to become a doctor, and he searches for answers.

"It's hard to know," says the professor of medicine at Mount Sinai Medical Center in New York. "I've never really figured it out. I've always wanted to do this, even though no one in my family is a doctor."

Asked why he picked his specialty (gastroenterology) after contracting a then-fatal disease from an accidental needlestick, and the answers come much more easily.

"Even though I could have gone into something much more lucrative, this became a grudge match in trying to go into the field to do battle with this thing," he says.

The "thing" Dieterich mentions is hepatitis C, about which he is not only a victim but is a nationally recognized expert—thanks not only to his own determination, but also to an accidental needlestick he experienced as a resident in 1977, which left him with the then-incurable form of hepatitis. Until then, he had nearly decided that he was headed toward becoming an ophthalmologist. In fact, he had already gotten a second job in an ophthalmology lab during his medical education, and had secured his residency to begin studying in his chosen specialty.

"So I went into GI and then GI-liver to try to do something about my own disease," he says. "At the time, there still wasn't anything that could be done."

Unlike many people who have the disease and do not know it, Dieterich knew immediately that he was infected, and also unlike many victims, he began experiencing debilitating symptoms nearly immediately.

Though many people have no symptoms "until it's almost too late," (which is one reason he advocates that everyone be tested for the disease), he became severely ill only about six weeks following the initial needlestick, which he says happens in only about 10% of cases. It's a good thing Dieterich had such determination about fighting this particular disease, because at the very beginning, when it would have been so easy to give up, he persevered, ultimately struggling with the disease for 20 years until he was cured, thanks in no small part to his own research.

"There were definitely low points when I was training and kept getting sick and relapsing, but when you work 100 hours a week  I guess it doesn't help," he says. "That was frustrating. At that point they weren't even doing liver transplants."

A lot of medical professionals avoided hepatitis C patients back then, he says, thanks to the ease of which the disease could potentially be passed along. Dieterich not only worked hard on helping patients such as himself, but he also was often one of the few physicians who would work with AIDS patients when that disease was new and not well-understood.

"When they asked for volunteers to take care of these people, only the naïve or deeply committed remained," he says. "But I did feel a duty. It was a time of great uncertainty about the disease and how it was spread and many were refusing to take care of people with this or HIV, which I really thought was unethical."

Dieterich has spent most of his time in research on clinical trials of drugs aimed at hepatitis C, which has led to better treatments—all have some level of personal customization. Dieterich himself was treated twice with drug regimens for the disease, which he says cured him the second time. New drugs are in the pipeline, and are desperately needed, he says, adding that up to 50,000 people per year will likely die in the United States from hepatitis C by 2020 "if we don't intervene." At this point, even though cures are possible and new and better drugs are still being developed, the likely deaths will occur largely because half of those with the disease don't even know they have it.

"It's a really good time to have this, but lots of people don't know they have it," he quips.

Ask Dieterich how it feels to have made such a difference in healthcare and he avoids the question, instead drawing on his own personal experience with the cure.

"It feels fantastic to be back to normal," he says. "Ask any of my patients who have been cured and they'll tell you."

Still, treatment for the disease is difficult and trying for patients who sometimes want to give up, as he once did. Dieterich says his experience on "both sides of the bed rail" has helped him practice medicine differently, and with more compassion. For instance, patients undergoing treatment regularly need liver biopsies, which can be very painful. That's why he always uses sedation for patients undergoing one, which is not always the standard of practice.

Otherwise, he generally tries to avoid anything that would clue patients in to his own struggles unless he really needs it, calling his experience his "trump card."

"I had it for 20 years before I was cured," he says. "When I really need it, I can use my experience and tell patients, 'suck it up. I did this, too.' "