Healthwise: Honoring Twenty Years of Hepatitis C Advocacy —By Lucinda K. Porter, RN
January 1998, Alan Franciscus launched the HCV Advocate. It was a paper edition consisting of six black and white pages. One of those pages was the cover page; so technically, there were only five pages of content. There was no website or digital newsletter. I didn’t write an article until March, and it wasn’t named Healthwise until September.
The HCV Advocate was the first regular hepatitis C newsletter. Although its beginnings were humble, its mere existence filled a huge need. My boss and mentor, Emmet Keeffe, MD believed in it so much that he was a paid subscriber. Dr. Keeffe’s money was well spent, and here we are, 20 years later. I am celebrating the event by looking back in order to look ahead. Here’s some brief history.
In 1996, Alan Franciscus was diagnosed with chronic hepatitis C virus infection (HCV). He looked for a hepatitis C support group in San Francisco. Finding none, Alan started his own. The rest, as they say, is history. After some brainstorming, the Hepatitis C Support Project (HCSP) was born.
In 1997, Alan’s first publication was the HCSP Information Packet. Now titled, “A Guide to Understanding Hepatitis C,” it keeps company with hundreds of fact sheets and other guides relating to HCV. The newsletter and literature are translated in multiple languages.
When the first HCV Advocate was published, hep C treatment was long, tough, and the response rates were low. The only treatment was interferon. It was not pegylated and injections were three times weekly. Ribavirin was not yet in the picture. Now HCV medications can cure just about everyone with a short, tolerable treatment.
I met Alan in 1997. I was a volunteer at a local underground syringe exchange site started by Joey Tranchini. Joey invited me to a meeting of people who were trying to increase hepatitis C awareness in the San Francisco Bay area. I met Alan there and like many people who meet him, I was smitten. Alan is fun, smart, driven, and humble. So, when he asked me to write for the HCV Advocate, it was easy to say yes.
One of Alan’s gifts is attracting others who are eager to make a difference. The list of contributors to the HCV Advocate is endless. Rather than forget to mention someone, please know that I honor you too in this anniversary issue. However, I must name one person, and that is Rose Christensen. She has worn many hats during her years with HCSP, including business manager, trainer and board member. Rose has been with the Project practically from day one and HCSP owes its life to Rose.
Of course, there are the many more who contributed. You know who you are. Thank you, thank you.
Those who know Alan, can probably guess that he is squirming over these accolades. Alan doesn’t like attention or praise; he likes action and results. So although I want to salute Alan, I know that the best way to honor him is to continue this work until hepatitis C is gone.
Which brings me to ask, “What do we need to do in order to eliminate hepatitis C?” Quite simply, we need you. Hepatitis C is a curable disease but if awareness, prevention, and treatment remain low, hepatitis C will continue to replicate its treacherous viral self. At a replication rate of a trillion times a day, can we afford to wait any longer?
You may be wondering what you can do to make a difference. It starts by saying, “Yes.” That is how Alan and I began. We and countless other hepatitis advocates didn’t turn our backs on this need. We didn’t let our own illness and incapacity hold us back. Alan was racked with hepatitis C symptoms, yet he focused on what he could do rather than on what he couldn’t do. It started with one thing, and one thing led to another.
You may be saying, “I have no special skills.” That doesn’t matter either. When Alan began, he had no medical background and no known writing skills. He was terrified of speaking in public, and didn’t like to travel. However, one thing led to another, and Alan wrote thousands of articles, accumulated many miles on cross-country trips, and is a powerful public speaker. That is only a little of what he has done. (Stop squirming, Alan. This article really isn’t about you; it is about showing others how they can make a difference.)
Let’s get down to the nitty-gritty and discuss the opportunities to which you can say yes. To see where we are, you can read the 42-page progress report, “Progress Toward Viral Hepatitis Elimination: National Progress Report with Data through 2015.” (cdc.gov/hepatitis/DVH2017NationalProgressReport.htm) It’s interesting reading, but if you are new to advocacy, that’s not where I’d start. Here are my suggestions:
- Tell your story and put a face on hep C. This is powerful way to defy stigma. https://www.hepmag.com/category/hep-stories
- Ask every baby boomer you meet to get tested.
- Join an online or in-person support group. When we care for our wounded, we help them fight for their lives. (forums.hepmag.com)
- Sign up for action alerts so you know what is going on. Make the occasional call, send a fax or email to your elected officials—local, state or federal. Silence is apathy. Let them know you care about hepatitis C, and you expect them to care too. An office visit or speaking at public hearings has an even bigger impact. You can sign up for action alerts from NVHR (nvhr.org) and Caring Ambassadors (hepcchallenge.org).
- Use your email signature line to send a message, such as, “One in 30 Americans born between 1945 and 1965 is living with hepatitis C. Get tested, get treated, get cured!” I use a graphic from the CDC’s website. (cdc.gov/knowmorehepatitis/media/ supportingimages.htm)
- Post messages to social media reminding the world about hepatitis C.
- Write a letter to the editor of your local paper about the need to reduce the risk of liver cancer by screening people for hepatitis C.
- Send money to your favorite viral hepatitis organization. No amount is too small. If everyone with HCV donated ten dollars, it would amount to nearly $30 million dollars.
- Ask organizations that have community calendars to promote local testing or awareness events. Check the NVHR member list to see what groups are active in your state. (nvhr.org/content/nvhr-members-map)
- For more ideas, check out this link to the CDC’s Know More Hepatitis campaign.
- Fight for health care for all. There is more to hepatitis C than this virus, such as liver cancer and all the medical conditions that people with hep C are at risk for. And then there is the simple fact that everyone should have access to health care.
And of course, please continue to read and support the HCV Advocate (hcvadvocate.org). Thank you Advocate readers. Your stories and support provide the inspiration that makes this worthwhile. Ten years ago, I ended our anniversary issue with the words of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” These words are still true today. We have come a long way, but we still have more to do. Please say yes to the invitation to make a difference.