Question: Tell us how your hepatitis C story began.
Technically, it began in 1988 when I was infected. I
don’t like to talk about how I got hepatitis C because how I got it is
irrelevant. However, since it is in my book, I’ll just get this over
with—I got it from a blood transfusion.
others who had this disease. I was working at a needle exchange site
in Redwood City, CA and nearly everyone had hepatitis C. In those days,
doctors told their patients not to worry about hepatitis C. Something
deep inside of me told me not to turn my back on these patients or this
disease. I wasn’t worried about myself—I was worried about my
community and the world.
hepatitis C support group. After that, one thing led to another, but
when I met you and you asked me to write for the HCV Advocate, things
got wonderfully wild. Stanford Medical Center offered me a job.
Opportunities to speak, write, and teach came after that, and quickly I
was immersed in this work. In 2008, my husband and I moved to the
Sierra foothills in Northern California and focused on writing and
speaking about hepatitis C. My first book, Free from Hepatitis C was published in 2011. My second book, Hepatitis C Treatment One Step at a Time was just released.
Question: What would you have done differently after your HCV diagnosis?
Taken my health much more seriously. My spiritual
and physical health are my highest priorities now—they are ahead of my
work. The health habits I have now serve me well. In many ways, I am
healthier now than I was 25 years ago. However, it was a slow process,
and I am grateful I don’t have to struggle with how to fit everything
in anymore—I just do it.
Question: Did you go through hepatitis C treatment? If so when and what and was it successful?
I went through three treatments. My first was in
1997 when treatment consisted of a single medication—alfa-interferon.
The odds of responding were heavily stacked against me, but I didn’t
let that stop me. Optimism and stubbornness are well-developed parts of
pegylated interferon in combination with ribavirin. I went through 48
weeks of treatment but the virus came back almost immediately after I
stopped taking the drugs.
This year I participated in a
12-week clinical trial using two direct-acting antivirals along with
ribavirin. I won’t know the final outcome of that until late November,
but I have a 98% chance of being cured. I do feel that all my
treatments were successful, because it is a triumph to complete
hepatitis C antiviral therapy. The outcome doesn’t concern me as much
as the fact that I am committed to taking care of my health.
Question: What advice would you give to someone who was just diagnosed with hepatitis C?
You and I have written so much on this, and the HCV
Advocate site has specific information for the newly diagnosed. Here is
a condensed version: You are not alone. After you get over the shock,
then the issue is what are you going to do about it? While you are
figuring that out, stick with some basics: Don’t drink alcohol. Take
measures to not transmit hepatitis C to others. Get the facts. Find
support. Establish good rapport with your medical provider. Build
health. Embrace life. Never give up hope.
Question: What advice would you give to someone who is starting hepatitis C treatment?
I’ve written two entire books on this subject, so
being concise on this advice is nearly impossible. Mostly I would say
to prepare for hepatitis C treatment like you would any other big event
that you want to turn out well. Put some forethought into your
treatment. We plan for work and educational-related goals, weddings,
learning new skills and participating in athletic events. Hepatitis C
treatment deserves good preparation.
books, but I wrote them to help people with their treatment. I think
they are must-reads because they are the only books specifically
written to help patients through hepatitis C treatment, and they cost
much less than a wedding does.
Question: If you could do one thing to help the level of care of hepatitis C—what would that be?
I’d make sure everyone had high-level education and
support. In my opinion, support is often synonymous with education.
Hepatitis C is a huge frightening subject, and when we are scared, our
ability to learn decreases. I wish everyone who had hepatitis C had
access to information such as the HCV Advocate and my books along with a group or coach to help guide him or her through the process.
Question: Why do you think it has taken so long for increased awareness, care, support and services for hepatitis C?
I am hopelessly naïve, so this is a huge mystery to
me. It constantly perplexes me that we didn’t learn from HIV that when
someone has a virus, we all are affected. Caring for each other
benefits us all.
Question: If you could look into a crystal ball, what do you think hepatitis C world would look like in 2015?
In addition to being naïve, I am perennially
optimistic. Identification of hepatitis C in those who are in the dark
about their disease, oral hepatitis C testing, and interferon-free
treatment overseen by primary care providers would be an ambitious 2015
Question: What would you like to achieve in your advocacy efforts?
No hepatitis C, no stigma, less fear and more health.
Question: Parting words?
Don’t let hepatitis C rob you of life. You may have hepatitis C, but don’t let hepatitis C have you.