Based on their front-line experience, people with hepatitis C, advocates, and loved ones sound off on what doctors could do better.
A diagnosis of hepatitis C often comes out of left field for the person who gets the news, and what the doctor says next can make a big difference. About 2.7 million people in the United States are living with the disease, according to the American Liver Foundation, but most have no symptoms and are surprised by a diagnosis. The way doctors break this news to their patients and discuss treatment options, side effects, and costs — in other words, their bedside manner — matters a lot, say people who have hepatitis C.
Based on their own experiences, here are nine things hepatitis C patients and advocates wish their doctors would do:
1. Never assume I engaged in risky behavior. Yes, the risk of hepatitis C is elevated among IV drug users who have shared needles, and among people who got tattoos or body piercings in an unsanitary place, had unprotected sex with multiple partners, or have HIV. But others at risk include healthcare workers and people who had a blood or organ transplant before there was screening for hepatitis C, according to the Centers for Disease Control and Prevention (CDC).
“Doctors would talk to us about risky behaviors, but we don’t know how Robert got hepatitis C,” says Susan Ryan about her husband, who was diagnosed in his thirties. Now 59, Robert, an engineer in Wilmington, Delaware, had no history of IV drug use nor did he have a transfusion or transplant before his diagnosis. But he is in the age range of people most likely to be infected, those born between 1945 and 1965.
2. Take your time with me. “When you give a person news about hepatitis C or its treatment, make sure you explain everything in a way that they understand, and ask them if they have any questions,” Ryan says. “Don’t rush or make the patient feel rushed — a hepatitis C diagnosis can be overwhelming.”
3. Lead with the good news about a hepatitis C cure. “Tell people that hepatitis C is curable when you give them their diagnosis,” Ryan says. “Don’t bury the fact that there are many treatments out there today that offer the hope of a cure.” Ryan says her husband’s first doctor was fairly pessimistic, though that was in the 1990s, when there weren’t as many effective hepatitis C treatment options available.
4. Talk about hepatitis C therapy early. Charlotte Stewart was diagnosed with hepatitis C in 1998 at age 48, and she has led support groups for others with hepatitis C in her hometown of Nashville, Tennessee. “We want to hear about all the options, even if our liver is in good shape,” Stewart says. “Many doctors don’t discuss medication until there is some liver scarring. This has to change.”