HCV advocate, author & nurse Lucinda Porter offers perspectives on care
by Larry Buhl
Lucinda Porter, RN, understands viral hepatitis from both sides: as a healthcare practitioner and patient. Her book, Free From Hepatitis C: Your Complete Guide to Healing Hepatitis C, covers her experiences living with hepatitis C (HCV) and helping others live with it.
Porter trains, writes, and consults for HCVadvocates.org and other organizations and is writing a second book. She spoke with A&U about testing, treatment, and misconceptions about viral hepatitis.
Larry Buhl: When you speak to the public, you don’t go into detail about how you contracted HCV. Why?
Lucinda Porter: Not because I am ashamed about how I got it—not at all—but because too many people want to focus on the risk factors rather than the disease itself. People make assumptions, so when I tell them I got it from a blood transfusion, their reaction is something like, ‘Oh, that’s okay, you’re a victim.’ And that rankles me, because the IV drug user isn’t any more culpable in getting hepatitis than I was. Nobody goes out and tries to contract hepatitis.
It reminds me of attitudes about HIV, that if you get it from sex, you deserved it.
Right. I want to remove those layers of shame. I think we need to take judgment out of the equation in order to treat [HCV] more effectively. When I live in guilt and shame I tend not to stand tall and take as much care of myself as I could. That was a big part of my decision to disclose and talk about what I was going through. By disclosing, I’m saying, the disease is not a stigma.
You’ve been living with viral hepatitis for a long time.
I was diagnosed in 1988. I was one of the lucky ones in that I had very clear symptoms right away. I’m still symptomatic, but my liver disease is mild. You can have advanced disease with no symptoms, or be symptomatic with minimal damage.
Have you taken any of the new protease inhibitors?
My doctors said that because my liver looked good, I could take a wait-and-see approach. I am weighing my options and considering the new drugs in the pipeline. The questions of when to treat and whether to treat are important, and they’re personal questions. But this is crucial: don’t let fear of treatment be a factor in whether or not to seek treatment.
Why did you decide to write this book?
I was a hepatology nurse at Stanford and many patients were going through clinical trials for HCV meds, and I worked with them and helped them manage the side effects that I had gone through. I wondered how I could reach more patients and symbolically hold their hands. Seventy-five percent of the book is on how to manage treatment and stay healthy. There is a lot people can do to slow down the progression of the disease, in addition to meds, such as eliminating alcohol and eating a liver-friendly diet. At the primary care level, many aren’t as familiar with the effect of diet on the liver.
What do you think the medical community is doing right?
I’m encouraged that the CDC now advocates testing for all baby boomers [people born between 1946 and 1964], because that gets away from just testing based on risk factors, which misses a lot of people. But we need more advocates and PR to encourage testing. There are TV ads for erectile dysfunction, but what about hepatitis testing? Everyone who feels called to do so should speak up however they can.
Larry Buhl is a freelance journalist and screenwriter living in Los Angeles.