Wow – Twenty Years!
That’s how long we have been publishing the HCV Advocate newsletter. I know it’s a cliché but these 20 years have gone by in a flash. What isn’t a cliché is that we have had amazing advances in hepatitis C (HCV) in the past 20 years.
When the HCV Advocate newsletter was launched in 1998, there was only interferon monotherapy. Interferon monotherapy could cure less than 10% of people who took it and the side effects were horrible. Cure? That word wasn’t even in use at that time. Now, we have drugs that can cure practically everyone, and the side effects are minimal.
Hepatitis C awareness in 1998 was nonexistent except among some patients and HCV medical providers. That was one of the reasons we started the newsletter. Pretty much everyone I spoke with, including medical providers, had never heard about hepatitis C. Patients wanted to understand more about hepatitis C so that they could educate themselves, inform their medical providers and make the best possible medical decisions. Now, many have at least heard of HCV, even if it is just about the high price tag of treatment. Additionally, we now have a robust advocacy movement, knowledgeable HCV medical providers, awareness programs to test people at-risk for HCV and educate the public about HCV. There is an HCV cell culture and it is now common knowledge that HCV is not just a liver disease—that is, it can affect many parts of the body. One instance is that HCV can cause type 2 diabetes in some people infected with HCV.
In 1996, shortly after a diagnosis of HCV, I started the Hepatitis C Support Project (HCSP). The HCV Advocate newsletter, our website and our national training program came later. Our humble beginnings started with support groups (HCV and HIV/HCV coinfected) and a local helpline. I also had one-on-one counseling in my home (I had no boundaries!). Additionally, I started to develop educational materials—the first one was our HCV Information Packet.
We raised money for these services with sidewalk sales in my front yard in the Haight Ashbury district of San Francisco, right next to the Haight Ashbury Free Medical Center—that was ALWAYS entertaining. We also received donations from friends, family, my personal savings account, and other members of our start-up non-profit. A friend gave me a very large personal contribution that kept us from going under at a critical time. Subsequently, we eventually received donations from our readership and pharmaceuticals that kept us in business for the long haul.
The success of an organization is never because of one person. The people behind the scenes of HCSP and HCV Advocate are a talented group who brought their passion to make the organization a success. Without these devoted people, HCSP and HCV Advocate would not have been able to grow and persevere over these 20-plus years.
Shortly after an article about me appeared in the San Francisco Chronicle, I was contacted by many people from all over the country, San Francisco and the Bay Area. It was during this time that I met one of the people who would be instrumental in the success of HCSP – Rosanne Christensen. Rose started as a volunteer and shortly afterwards we hired her. Through the years, Rose’s role in the organization grew and she wore many hats—office manager, supervisor, part-time trainer, training coordinator, editor, training manager, and a good friend.
Shortly afterwards I met Lucinda Porter, RN at an ill-fated stint at another organization. Lucinda started as a volunteer. She has also become a good friend and mentor. Lucinda has written articles, fact sheets, guides, and is an editor of our newsletter. Lucinda also heads up our Board of Directors. Lucinda, along with another medical provider wrote our first published and distributed educational material—A Guide to Making Sense of Research and Medical Literature.
Another person who started out as a volunteer was David Mazoff, Ph.D. who later was hired on as webmaster. David was also an editor, formatted many of our fact sheets, guides and occasionally wrote articles. David contributed to our success through the many years he worked with us before retiring in 2016 from HCSP.
Leslie Hoex– Owner of Blue Kangaroo Design, has been our design and production person almost from the beginning. Leslie has designed and formatted our fact sheets, guides, publications of distributed materials, mastheads; pretty much any design that you see is the work of Leslie. As you can tell from the materials, Leslie is a very talented designer.
Judy Barlow joined us in 2016 as our webmaster. Judy makes sure that our websites are running in tip-top shape and keeps the nasty bugs from infiltrating our various websites.
The people who work at HCSP/HCV Advocate all share a common trait—we are all hard-working, dedicated people that strive to provide the highest quality accessible information to educate and advocate for our readership—the hepatitis C community.
Most of us who started with HCSP/HCV Advocate are still plugging away all these years later. HCSP/HCV Advocate has been fortunate to have such talented and dedicated people to sustain HCSP, HCV Advocate and our newsletter throughout the years.
We all keep moving along. I was hoping to ride into the sunset when we eliminate HCV. I don’t know if that is a pipedream, but hey it just might happen—dreams do come true…now if I can only remember who said that, I would hold them to it!
Check out HCSP Fact Sheet: A Brief History of HCV to learn more about how far we have come: http://hcvadvocate.org/hepatitis/factsheets_pdf/Brief_History_HCV.pdf
Alan Franciscus is the Executive Director of the Hepatitis C Support Project and the Editor-in-Chief of the HCV Advocate Website.
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