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 also include 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!
Recently, HepCBC started covering hepatitis B, as well as C, and our 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 ordinary people everywhere of all ages...leading those who do not know they have it, or are too ashamed of their disease to seek testing and treatment. And when they need a sympathetic ear, they call HepCBC's helpline.
Now, as in 1996, most of our activities and projects are run by volunteers, most of whom have "Living Experience" of HCV or HBV. Serving the needs of HCV+ and HBV+ people and eradicating viral hepatitis remain our top priorities.
Our Story What We Do
Below are highlights of HepCBC's history: what we do, how our core work has evolved. We've moved from providing patients with newsletters, booklets and pamphlets to a broad Internet presence, 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+ (and now HBV+ also) people can get treated before serious organ damage occurs. We "translate" the latest viral hepatitis 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+ (and now HBV+ as well!) people to become leaders in the eradication of this terrible disease.
- 1996 — HepCBC incorporated in BC
- 2000 — HepCBC took over monthly publication of hepc.bull (published continually since 1996), plus Peppermint Patti’s FAQs, and a series of informative pamphlets.
- 2001— HepCBC became 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 — Several info booths at aboriginal and immigrant health fairs, shopping malls, flea markets!
- 2014 - Publicized or organized 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 and 2017 — New Programs: Prison Outreach and Hepatitis B. Held 34 educational events in BC!
- 2012 through 2017 — Providing Patient Group Submissions to Canadian Drug Review and BC Pharmacare as of 2017 we've done 37 reviews of various drugs and therapeutic groups, and government agencies!! All by our volunteers! See http://hepcbc.ca/patient-group-submissions-bc-pharmacare-cadth
Our Programs How We Do It
Ongoing HepCBC programs and projects which need support:
EDUCATION: HepCBC's researchers and writers use their "Living Experience" to 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 bulletin, social media.
PATIENT/CAREGIVER SUPPORT for those who
- have recently been diagnosed with HCV or HBV;
- are going through treatment;
- are (pre- or post-) liver transplant;
- have chronic hepatitis C or B;
- have advanced liver disease;
- are contemplating HCV or HBV treatment;
- want to discuss alternative treatments for chronic viral hepatitis (diets, exercise);
- have other health complications due to HCV or HBV;
- want to support a HCV+ or HBV+ 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 Main Office in Victoria or Outreach office in Vancouver;
- Educational forums and online webinars.
PERSON-TO-PERSON OUTREACH includes
- Visiting rural/remote Northern and First Nations communities through HCV/HBV Roadshows, bringing educational materials, nurses, and :positive" peers to remote communities in order to decrease stigma and foster a conversation about viral hepatitis. In 2014 two nurses and a HCV+ grandmother travelled 5400 km, giving presentations to 23 communities in 18 days. 2 more successful trips to North and Interior were held in 2017! More planned soon.
- Information Booths at shopping malls, immigrant wellness fairs; 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
- 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 B and C epidemics and patients’ experiences and concerns.
- Bus ad anti-stigma campaigns throughout BC
TREATMENT ACCESS activities include
- Monitoring HCV and HBV care and treatment policies and implementation;
- Completing 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 volunteers with "Living Experience" of viral hepatitis, 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+ and HBV+ people survive on, yet they contribute what they can, to make sure our organization can continue helping people such as themselves.