HepCBC Hepatitis C Education & Prevention Society
Our Impact Why We Exist
In the late 1990s, many British Columbians were shocked to discover they'd contracted a terrible new disease, "Hepatitis C," through blood transfusions and blood products given to them during operations or routine medical procedures. They all wanted to know:
- how long they'd live,
- if there was any treatment,
- how to avoid spreading the virus to loved ones,
- what symptoms they might develop over time, and how they might expect to die,
- if there was a special diet or anything they should do to slow down the progression of the disease...
Their questions were endless and no answers were in sight. These are still the questions newly-diagnosed people have, but at least now they have HepCBC there to help them out.
HepCBC was formed when several such patients met up and decided to do something to help one another, and then to share what they found out with others. At first this was through letters to the editor, pamphlets, a website www.hepcbc.ca, and a monthly newsletter (hepc.bull), which was published continually until Sept. 2016 when it was replaced by a weekly online newsletter. We put up bus ads showing ordinary people to help de-stigmatize the disease and get as many people as possible tested for it - and treated if necessary.
Now HepCBC's members include people from the initial group, but also many others who didn't realize they had hepatitis C for many decades while it was "silently" destroying their liver; they may have contracted it through youthful experimentation with drugs (often just once or twice, decades ago), childhood vaccinations in which shared needles were used, unsterile tattoos, and so on. The important thing is NOT HOW YOU CAUGHT IT, but HOW YOU'RE DOING! This message has reached people who inject drugs, residents of remote and aboriginal communities, baby-boomers, immigrants from HCV-endemic countries, people with long-term dialysis, sex workers, prisoners, and people everywhere.. leading those who do not know they have it, or are ashamed of their disease to seek testing and treatment. And when they need a sympathetic ear they call HepCBC's helpline.
Back in 1996, everything was done by volunteers, most of whom were HCV+, working out of their homes, the "kitchen table" advocates. And to this day, most of our activities and projects are run by HCV+ volunteers. Most of our Board Members are HCV+. Serving the needs of HCV+ people and eradicating the disease remain our top priorities.
Our Story What We Do
You can see from the highlights of HepCBC's history (below) what we do and how our core work has evolved over the years. We've moved from providing patients with newsletters, booklets and pamphlets to a broad Internet presence with website and social networking, plus face-to-face outreach to people from a variety of at-risk populations. We don't simply monitor health policies; we try to influence them. We don't just serve people who are already diagnosed; we try to get everyone tested so all HCV+ people can get treated before serious organ damage occurs. We "translate" the latest research into everyday language. We cooperate with other organizations at local, national, and international levels. We actively confront fear, stigma and discrimination; and hopefully HepCBC will empower HCV+ people to become leaders in the eradication of this terrible disease.
- 1996 — HepCBC incorporated in British Columbia
- 2000 — HepCBC took over monthly publication of hepc.bull (published continually since 1996), plus Peppermint Patti’s FAQs, and a series of informative pamphlets which are updated regularly.
- 2001— HepCBC became a registered charity.
- 2002 — Website at www.hepcbc.ca launched
- 2004 — Beginning of World Hepatitis Month and Day for HepCBC - continued through to present
- 2008 - 2012 — a HepCBC float and marchers in Victoria Day Parade
- 2011 - present — HepCBC joins Steering Committee of national organization Action Hepatitis Canada.
- 2011 - 2016 — HepCBC's Liver Warrior's Team participates in the Victoria Goodlife Fitness Marathon
- 2012 — HepCBC hosts Public Forum in Victoria on Hepatitis C Treatment Guidelines from Canadian Assn. for Study of the Liver; Over 120 guests from medical and patient communities.
- 2012 through present — Providing Patient Group Submissions to Canadian Drug Review and BC Pharmacare for 12+ drugs plus a comprehensive Therapeutic Review.
- 2012 through present — Info Booths at First Nations Health Fair, Multicultural Food and Health Fair, and convention of Infectious Disease Specialists
- 2013 — Social Networking! Established YouTube Channel plus Facebook and Twitter accounts
- 2014 — Helped publicize or organize World Hepatitis Day events in 14 BC communities
- 2013 and 2014 — Took HCV Awareness Roadshows to northern, interior, rural, and remote communities
- 2014 and 2015 — Opened Victoria and Vancouver Offices
- 2016 - Many outreach events!
Our Programs How We Do It
Ongoing HepCBC programs and projects which need support:
EDUCATION: HepCBC's HCV+ researchers and writers produce
- pamphlets and posters, which are distributed in community centres for the general public, immigrants and refugees, sex workers, or IV drug users; in native friendship centres; and in clinics throughout BC;
- website, weekly newsletter, and social media.
PATIENT/CAREGIVER SUPPORT for those who
- have recently been diagnosed as HCV+;
- are going through treatment;
- are (pre- or post-) transplant liver recipients;
- have long-term, chronic, or advanced hepatitis C;
- are contemplating HCV treatment or research trial;
- want to discuss alternative treatments for chronic HCV such as diets, supplements, or exercise;
- have other health complications due to HCV;
- want to support a HCV+ friend or family member.
Patient/Caregiver support includes
- 365 days a year phone and email support by HCV+ peers;
- Lending library and peer support at Outreach Office in Victoria;
- Educational forums and online webinars.
PERSON-TO-PERSON OUTREACH includes
- Visiting rural/remote Northern and First Nations communities through HCV Roadshows, bringing educational materials, nurses, and HCV+ peers to remote communities in order to decrease stigma and foster a conversation about hepatitis C. For example, in 2014 two nurses and a HCV+ grandmother travelled 5400 km, giving presentations to 23 communities in 18 days. Many more are planned!
- Information Booths at shopping malls, immigrant wellness fairs; the Victoria Marathon tradeshow; First Nations health fairs; World Hepatitis Day events in BC cities; PRIDE events; and health fairs for baby boomers.
PATIENT EMPOWERMENT/ANTI-STIGMA activities include
- Participation with other HCV+ people publicly in marathon, parades, and info booths;
- Opportunities to share our stories safely through our website, newsletter, or a documentary movie;
- Developing an "HCV Manifesto" pamphlet which defines HCV patient rights to affordable treatment, and to a life without discrimination due to their health status;
- Communicating with pharmaceutical companies and government officials about the hepatitis C epidemic and HCV patients’ experiences and concerns.
- Bus ad anti-stigma campaigns throughout BC
TREATMENT ACCESS activities include
- Monitoring HCV care and treatment policies and implementation;
- Participation in federal and BC PharmaCare Patient Group Reviews of new drugs
- Meeting and working with other groups to develop a strong, united patient voice in treatment access issues.
What You Can Do
HepCBC is looking for volunteers with expertise in many areas as diverse as translation, data entry, bookkeeping, artists, people who like filing papers, helping people who can't get around, counselling, teaching, organizing volunteers or events, and so on. We also are hoping to find more Board members over time.
HepCBC, an organization currently run almost totally by HCV+ volunteers, really appreciates all donations; no donation is too small! We are a small group confronting a big problem and need as much help as we can. The help of individuals, small businesses, large corporations, and foundations are sought.
We truly know how little money some HCV+ people survive on, yet they contribute what they can to make sure our organization can continue helping people such as themselves.