Harm Reduction Victoria

“Fight Alongside Us for Our Right to Treatment” – Community Statement INHSU 2017

by Seer E.S. on 25/09/2017

The Community and peer delegates to 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 INHSU2017.  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, clincians 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 hepatits 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.

 

  • 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. Yes that includes peers treating peers.

If we are empowered to teach what we know to physicians, clinicans 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 labor willing to do the jobs other service providers are unwiling to do and instead be understood as experts with a rare and valuable skill set. Without our commitment hep 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 hep C treatment but to be key players in deliveirng effective treatment.

Both government and pharmacutical 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.

Pharma companies have many future revenue streams related to liver health and we believe now is the time to make hep 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 unnnecessary 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.

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