Community and Peer Statement
Wednesday, 6th September 2017: New York
This statement was developed by peer delegates from across the world at the INHSU 2017 Community Day, held on Tuesday, 5th September 2017, and presented to the opening plenary session of the 6th International Symposium on Hepatitis Care in Substance Users (INHSU 2017).
The community and peer delegates of INHSU 2017 would like to thank the conference organisers and sponsors for the opportunity to meet, to share experiences and knowledge and to draft this Community Statement for INHSU 2017. We ask you to keep the following in mind as we meet this this week, but also as you return to your homes and work.
At INHSU 2017 the community most affected by hepatitis C - people who use drugs - call upon researchers, clinicians and all delegates to fight alongside us for our right to treatment.
We underline the need to treat any member of our community with any chronic hepatitis C infection.
While access to hepatitis C treatment has improved for many people who inject drugs, too many of our community are still locked out of treatment.
Hepatitis C treatment should be available to all those who wish to access it and we should not accept any non-medical obstructions to treatment. Also:
- Using and injecting drugs should not be an excuse not to treat;
- We should not have to be near death or have late stage liver disease to access treatment;
- Closed settings such as prisons, detention centres, mental health and drug treatment services must also be seen as an opportunity to treat. It is unacceptable that in so-called developed nations such as the United States, people in detention are denied hepatitis C treatment.
Community organisations, drug users and peers are skilled, resilient and committed, and as such can and should be supported to deliver every aspect of testing and treatment for hepatitis C. That includes peers treating peers.
If we are empowered to teach what we know to physicians, clinicians and researchers, we can improve your treatment delivery to our community. We believe it is time for all treatment providers to see us as indispensable experts in our own health.
Further, we must have a common understanding of what constitutes a peer worker, and peer workers must be valued, paid properly and an integral part of as many service models as possible.
The term “peer worker” must stop meaning low cost or free labour, willing to do the jobs other service providers are unwilling to do, and instead be understood as experts with a rare and valuable skill set. Without our commitment hepatitis C will never be eliminated.
We call upon researchers to move away from asking whether users can complete treatment and instead to ask what more users can do to improve treatment.
We can do a lot by ourselves but we need you all to fight alongside us for the changes that are required if we are to eliminate hepatitis C. We need you to advocate more strongly and more loudly for our rights - alongside us and not for us - not just to access hepatitis C treatment but to be key players in delivering effective treatment.
Both government and pharmaceutical companies bear some responsibility for the ongoing and future deaths in our community. We implore pharma to open up multiple avenues of medication accessibility for health systems and individuals alike.
Pharmaceutical companies have many future revenue streams related to liver health and we believe now is the time to make hepatitis C treatments more financially viable for all of us. It needs to be clear that, whatever the rationale for drug prices, they are contributing to unnecessary deaths in our community.
Clinicians, researchers, delegates and bureaucrats: we need to know what we can do to help you use your relative positions of power to influence those decision makers and legislators that are not in this room and whose decisions have such an impact on our very life and death.
Once again, we are happy to have this opportunity to work share and learn together this week.
ABOUT THE CONFERENCE
The 6th International Symposium on Hepatitis Care in Substance Users is the leading international conference focused on the management of hepatitis among substance users. It is organized by the International Network for Hepatitis in Substance Users (INHSU). The symposium has been previously held in Zurich, Brussels, Munich, Sydney and Oslo. The 6th International Symposium on Hepatitis Care in Substance Users is taking place in New York.
RESEARCH TO BE PRESENTED AT INHSU 2017
The conference will present latest research on
Cost-effectiveness of scaling up HCV prevention, testing and treatment among people who inject drugs;
The rising burden of opioid use in North America;
Needle & Syringe Programmes (NSP) and Opioid Substitution Therapy (OST) including the cost-effectiveness of NSP;
Strategies to enhance prevention of HCV infection and reinfection;
Novel diagnostics for HCV infection;
Updates on models of care;
Efficacy and safety of new HCV therapies in people who inject drugs.