HCV Manifesto

 

The HCV Manifesto was developed to bring awareness to the problems widely faced by people with hepatitis C, and how they may be solved. There are similarities to the principles of Meaningful Involvement of People Living with HIV and Nothing About Us Without Us principles. It was promoted and shared in British Columbia in 2014 by an organization called HepCBC, which is now closed.*

“As people with HCV, we claim the right to live lives free of discrimination, to access appropriate health care and to be consulted on policies and programs which affect us.”

 

In part, The Manifesto asks that organizations and individuals:

  • Support people with HCV in our struggle against discrimination based on our HCV+ status, including such actions as excluding us from our choice of job or residence, denying us insurance, denying us the same standard of medical care given those with other diseases, or segregating us from others.
  • Avoid scapegoating people with HCV, blaming us for the epidemic or generalizing about our past or current lifestyles. Avoid asking people with HCV how we contracted the disease; it is irrelevant.
  • Support broader testing of baby boomers, and other groups that are most affected by HCV based on epi-data, to locate people who have HCV but do not know it so that they may be offered life-saving treatment and support.
  • Support a research agenda committed to delivering cures for HCV and hepatocellular cancer, and for reversing cirrhosis. In order to expedite improvements to their treatments, integrate into the very beginning of clinical trials investigations involving people with cirrhosis, those with co-infections such as HIV/HCV or HBV/HCV, or those who have previously failed treatment.
  • Support greater and meaningful involvement of people with HCV at all levels of civil society, community
    organizations, and government (volunteers, staff, spokespeople, and decision-makers).
  • Support HCV prevention messaging which ensures educational materials do not reinforce stigma.
  • Support stable and proportionate funding for HCV organizations and groups which reflects the burden of the disease. When appropriate, include people who are monoinfected with HCV (95% of all people with HCV) in funded programs for HIV+/HCV+ co-infected people.
  • Support universal access to harm reduction supplies so that all people can have the option
    of choosing low risk behaviours.
  • Support the principle that people with HCV be actively and closely involved in the
    design and delivery of services we need: “Nothing about us without us!

 

Read the HCV Manifesto poster from HepCBC.

 * The BC Hepatitis Network consolidated the work of HepCBC (the HepCBC Hepatitis C Education and Prevention Society) and the Pacific Hepatitis C Network to become a single hepatitis-focused organization in 2020. Learn more about the legacy of HepCBC here.