Can you tell us a bit about how HCV Advocate got started?

Well, I’d been going to my doctor for about 10 years to figure out what was wrong – I had severe fatigue, depression and many other symptoms but no one could say what was wrong. Lucky for me, when my doctor retired another doctor came in – this was 1996 – he tested me for hepatitis C and I got diagnosed. Being a naturally inquisitive person, I started doing research at the library and it was all there’s nothing to worry about or you’re going to croak tomorrow. Constructive information and advice were near impossible to find.

At the time I had a friend working for SF Chronicle who wrote an article about what I was going through, and I put my phone number in it. I was amazed by how many patients contacted me. This made me realize other people were having the same issues I was, and I needed to do something about it. I realized I just needed to educate myself and others, so I put my first fact sheet together for HCV.

After that I started working with some others I met with hepatitis C and we started a newsletter, a bunch of educational materials and now the website. In 2002, we started a national training program, which we’ve continued to build. It’s been a real process, really it’s become my life work. It’s funny how that happens. You know, I was an accountant before, but I hated my job – just hated it. So I wasn’t sure what I was going to do but before I was diagnosed I actually did some occupational testing to see what I would be good at. They told me I should be a teacher, writer, reporter, or counselor, but then 3 weeks later I got diagnosed. I thought I’m not going to be able to do any of these things, but in the end, I get to all those things with HCV Advocate.

That’s incredible! Coming to grips with a diagnosis is really hard for a lot of people. Was there anything in particular that made it easier for you to lean in and take the wheel on your health?

Well,  the research I was doing, trying to understand it, made me realize for myself that hepatitis C was a slowly progressive disease — taking care of myself, being proactive in my health, trying treatment, was essential. I realized it wasn’t an immediate death sentence, but I had to really stay on top of it and live well. There are all these things you can do, like getting enough sleep, eating well, exercising all those things helped me to live well with it. I was struggling with depression at the time as well, but really listening to my body and giving it what it needed to help me through those rough spots.

I will say, it helped to be in San Francisco. I didn’t experience as much of the stigma that others experience around hepatitis C. You know, it’s a disease no one went out there to get hepatitis C people just have to understand it. I go around the country and I talk to people and it’s so sad to hear from people who have had their families and friends turn away from them. In the midst of conducting these workshops, (we have 50 people in a workshop) people will come up to me after and whisper to me I don’t want people to know, but I have hepatitis C and it just breaks my heart that people are so stigmatized and discriminated against.

This is such an important point. Do you have any thoughts on how we can fight the stigma?

Yeah, you know, for me it’s all about education. A lot of people equate this disease with injection drug use, that’s not the only way you can get it. There are a lot of ways you can get it! I think telling our stories, and knowing that we can cure this disease – that’s everything.

Awesome! What advice would you give to someone newly diagnosed today?

I’d have to say step back and educate yourself as much as possible, There ARE treatments that can cure almost anybody. Self-care is important, as is getting your healthcare in order. We’ve got resources on HCV Advocate, like Pack Health, which can help with these pieces, and then it’s just a matter of getting meds and not freaking out and being proactive and staying on track.

These medications are truly a miracle – there was a very low cure rate and very severe side effects when I was going through this, now people can be cured in 8-12 weeks. It’s just a matter of getting your ducks in a row and getting that medication. You may have to fight for it, but it’s really worth it.

You mentioned the resources on HCV Advocate. What would you say are the biggest barriers you help people with? 

Definitely accessing medications, not having insurance that covers it. There are resources for that, patient assistance programs for example, but they really need to fight for that. And even if they have insurance, they have to look into their coverage before it comes up for renewal to make sure it’s covered. Pack Health is helpful for this process as well, but you just have to be aggressive sometimes, you can’t take the lazy path.

The information piece is also huge – our niche is we take to research and we put it into a patient language. I write a lot of it and then we have a nurse – Lucinda Porter – who helps a lot. We also have a fellow who helps write on injection drug use and various issues around education as well. We’re currently in the middle of doing an October special on extrahepatic manifestations of hepatitis C — related conditions such as diabetes, depression, and fatty liver — that can actually be caused by hepatitis C. We also have a great booklet/guide for people who are newly diagnosed.

That’s so great. Do you have any recommendations as far as social support?

I am a member of some Facebook groups to see what’s going on. A lot of them are very supportive!

We’re lucky to have the new medications, information, and resources we do now. Now it’s just making them as accessible as possible for as many people as possible. So that’s what we do!  Now, the goal is to eliminate hepatitis C and cure everyone with it!

 

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