EuroNPUD members attended and presented at two important hepatitis C events held in Portugal in September this year. The first event was another really well put together Correlation Community Summit on Hepatitis C which brought together European drug user activists, people from the HCV community of patients and health professionals.
The International Symposium on Hepatitis in Substance Users followed immediately after in Caiscas, on the outskirts of Lisbon, which has just gone from a bi-annual conference to an annual one in order to keep up with the fast pace of developments in the HCV field. Although only 7 years old the event attracted a huge audience, with delegates including health professionals (doctors, nurses and allied health), researchers, community organisations, people who use drugs and policy makers (possibly in that order).
What was so interesting was that both events seemed to mark what might be hopefully described as the beginning of a sea change in the HCV field. It is becoming clearer to everyone involved (and something certainly the drugs field has known for some time) that in order to successfully get a hold on HCV and reduce numbers of deaths and new infections, people needed to be treated as a person first and foremost -and not (as was said many times over the week) as just a ‘liver on a plate’ and the way we look at HCV treatment has to change for good.
Some of the overarching thoughts from the week started with making policies actually realistic on the ground; - they have to translate to the real world. Good policies really don’t mean much unless they are implemented creatively and meaningfully–and this means they have to be meaningful to the person on the street -the person with HCV.
The new drugs are an enormous step forward and they are clearly working but we have to listen to community groups and services with good ideas about how we can both encourage people into treatment – deliver and monitor their treatment effectively and follow up on their treatment afterwards.
I heard community groups and innovative health professionals share really important stories about bringing treatment to the person. That by looking at the person as a whole -and by understanding ‘our community’ and the issues that surround it, will we be better able to tackle hepatitis C and one day, eliminate it altogether. More services in the community, peer led supports and structures to surround treatment, health services addressing discrinination and punitive treatment philosphies, even changing the way we frame services completely, was was repeatedly being raised and called for.
There were many examples at both events which looked at community HCV treatment. Examples of ways we can bridge the gap between the street and hospital rooms; Pop-up services’, going out into community hot spots and setting up services that appeal to peoples more immediate needs such as homelessness, poverty or other health requirements in order to tackle the issue of HCV testing, treatment and follow-up care. Fibroscans offered in mobile units (such as our peers in Norway have set up), meals given alongside HCV testing and scans in Vancouver and our own community leading efforts to retain people in treatment around the world.
It is not rocket science to understand that a person who may be living on the street, with a drug problem, no money and leg ulcers, for example, that they might have more pressing concerns -or indeed the ability, to be able to take medications daily, turn up for blood tests and scans, and keep returning for follow-up care after treatment has finished. So it was great to hear about outreach workers taking HCV treatment to the street, to the person and supporting them via a myriad of measures, to get their chance at testing and treatment.
We heard that there are still millions of people who have hepatitis C still remain undiagnosed and many in our community still remain fearful of interactions with hospitals. PWUDs are heavily stigmatised, and that stigma falls throughout the medical profession particularly in the upper eschalons such as the consultant community. This is not what health professionals like to hear of course but its critical to address it when working towards better engagement with our community and we need to hear more about this although it was a change to hear this being discussed.
By listening to our fears and concerns around HCV treatment, (post interferon days) and our communities interactions with hospitals where we have received discriminatory healthcare –we begin to address some of the other barriers to why we dont or cannot access these lifesaving treatments.It was clear there are NO reasons why someone who uses drugs or drinks should be excluded from DAA therapies, but we have to understand the reasons we are not always coming forward for it.
It was also raised repeatedly how we must ensure we keep people connected to follow up care –clusters of liver cancer that are appearing post treatment for those with severe fibrosis, are concerning. Research still remains very constrained by its academia and funding rituals, and in an area where our community has been heavily involved in research, it was clear that there are still problems in getting research to become meaningful ie, translating into good policy and practice, and treating participants well. The INHSU was heavily researcged focused and this was an area that needed more discussion.
We have to thank Correlation and INHSU for putting on 2 excellent events. The people involved in the Correlation event succeeded in bringing a host of community representatives together, especially from Portugal itself, that really gave us very clear examples and reasonings behind why we must look at HCV treatment in a different light from before. The days of the ivory consultants tower need to end if we are to tackle ending HCV by 2030 as is the universal goal.
It is also good to look at the developments of the INHSU conference bringing consultants and health professionals out from their hospitals and surgeries to meet people from the HCV community and particularly, from the community of people who use drugs. We hope to see more from our community in future events as, for an event that was all about our community, there should have been more from our communities perspective. However, the way the harm reduction room was set up, which had at all times, a fully functional needle and syringe pick up point, as well as naloxone AND a doctor able to prescribe methadone on the day of need - was really very well done. It was fabulous to see our community catered for in that way and it was used!
We look forward to the next events from both Correlation and the INHSU and it was once again, a great opprtunity to meet with peers from around the world and talk about what things were really like, several years in from the new DAA therapies -and while there is a huge amount of work ahead to take HCV treatments to the people -the treatments ARE working, services are finally on the road to accepting new approaches, and follow up care is starting to be given the importance it also deserves but rarely has received.