The Hep-C Community Summit, organised by Correlation European Harm Reduction Network, has brought together people from the affected communities, advocates, researchers, healthcare providers, harm reduction practitioners, and policymakers to discuss and to develop an enduring cooperation for building the road to HCV elimination.
The summit was organised in close cooperation with the International Network of Hepatitis in Substance Users (INHSU), which organised the 7th International Symposium on Hepatitis Care in Substance Users in Cascais, Portugal on 19 – 21 September 2018. As part of this conference, INHSU usually works together with community-based organizations to hold a Community Day prior to the conference. In 2018, INHSU has partnered with the Hep-C Community Summit to organise this day.
In fact, a key element of the summit was the strong presence and engagement of the community of people who use drugs (PWUD), which represent one of the populations most affected or at risk of hepatitis infection. Today it is widely acknowledged that the elimination of hepatitis C, with the availability of highly effective treatments, will not be possible if the specific needs of this specific group of people are not prioritised and addressed and above all if the community of people who use drugs are not actively and effectively involved and engaged in the decisions which regard them.
Correlation has a long history in the empowerment of marginalised and vulnerable groups -including drug users, sex workers, undocumented migrants, MSM, and young people at risk- in improving the accessibility and quality of services for these groups and in influencing policies.
The added value of this summit stands in the efforts made by the organising team in bringing together researchers, healthcare providers, harm reduction practitioners, and policy makers, with representatives from community organizations across Europe through a platform which would allow their voices to be heard. The focus of the summit was to identify priority actions for advocacy. The summit was organized in Portugal, considered by many as a country which has adopted progressive drug policies and we have been able to hear from their own words and experiences on the ground what contribution community workers are able to offer in the roadmap towards elimination of hepatitis C.
The Hep-C Community Summit has highlighted the needs, current gaps and opportunities to make HCV treatment available for all people. The summit has also presented and discussed community approaches for testing and treatment for HCV as well as innovative prevention interventions. Furthermore, we discussed and agreed on further community actions and advocacy priorities. In fact, as a result of the meeting, common advocacy activities were agreed on between involved networks and organisations.
COMMUNITY NETWORKS AND ADVOCACY PRIORITIES
CORRELATION European Harm reduction Network
Priority: Provide testing and treatment in harm reduction and community settings
- The One Stop Model increases access.
- Testing and treatment in HR and community services is (cost) effective.
- It’s a necessary step to achieve elimination in key populations.
Actions points for change:
- Legal barriers must be abolished.
- HR and community services have to be an integrated element of the cascade of care.
- The medical sector has to acknowledge the competence of community health care workers.
Priority: Involvement of communities in the development and implementation of elimination plans at national level
- Community involvement will support the accountability, equitability, and people-centered approach of the HCV response.
Actions points for change:
- Formal community and civil society engagement crucial to oversight and transparency of program responses.
- Community feedback is crucial to monitoring and improving the HCV response
- HCV services must adapt to needs of people living with or at risk of hepatitis, not vice versa.
EHRA – Eurasian Harm Reduction Association
Priority: Reducing the inequality in the access to HCV testing and treatment in CEECA for people who use drugs (PWUD)
- HCV treatment access in CEECA happens mostly through out-of-pocket payments, (in)formal exclusion of PWUD, and outdated/non-existent treatment protocols.
- There is, however, strong community treatment activism (as in Russia, Ukraine and Georgia).
- Community efforts led to best practices on negotiations with the state and pharmaceutical companies, and increasing treatment demand and literacy (still unevenly distributed across the region).
Action points for change:
- Intensified horizontal cooperation between community networks, including groups of PWUD.
EATG – European AIDS Treatment Group
- No Elimination without decriminalization:
The impact of repressive drug policies on health and quality of life
- Reaching out to key populations in prison settings
- Repressive drug policies fuel the HIV/Hepatitis/TBC epidemics, strongly impact the health and quality of life of PWUD and hinder effective prevention and treatment.
- They lead to PWUD invisibility, discrimination and stigma; harassment and violence by police, increased incarceration and infringement of Human Rights; poor health and quality of life and barrier to PWUD access to testing and treatment.
- The more repressive the drug laws, the more time PWUD tend to spend in correctional institutes.
- High-risk drug injection often continues when in prison, with an increase in the risk of acquiring HIV/hepatitis.
- Having ever injected drugs in prison is a strong predictor of HIV/Hepatitis infection among PWUD.
Action points for change (1):
- Drug use must be primarily a health and social problem.
- Best practices on progressive and evidence-based drug policies must be disseminated to reduce new infections, improve public health, and the lives and health of PWUD.
- Civil society can advocate with governments for adopting effective HR approaches as well as to map/respond to PWUD social needs.
Action points for change (2):
- Peers should be involved in service design and implementation.
- Dissemination of best practices.
- National guidelines must include peer work in prisons.
- HR including NSP, OST and condoms must be made available in prison settings.
ELPA – European Liver Patients’ Association
Priorities: Testing and micro-elimination as targeted national elimination of viral hepatitis C in well-defined populations
- Highest risk groups are left behind in the pursuit of HCV elimination in Europe.
- Systematic gaps where high-risk populations are ignored if they are difficult to access outside of existing pathways.
- Not enough attention is given to hepatitis testing, which is key to diagnosis and elimination.
Action points for change:
- A viral hepatitis strategy, with specific goals for addressing high-risk populations, is the first step for any country to begin facing the epidemic.
- Breaking down national elimination goals into smaller goals focusing on individual population segments.
- Continue carrying out a testing week focused on hepatitis.
EuroNPUD/INPUD – European Network/International Network of People who Use Drugs
Priorities: HCV programs should not focus on reducing drug and alcohol use.
Care programs must not individualize or blame PWUD. Structural barriers should be brought to the fore.
- Many health programs concerned with reducing client’s drug use risk alienating PWUD.
- Health and social programs for PWUD propose biomedical solutions which blame PWUD and portrait them as a problem. Treatment “failures” are blamed on patient non-compliance, and problems such as poverty, housing, social welfare and inequality fail to be addressed.
Action points for change:
- Eliminate abstinence and use reduction as the goal of any treatment, and refer to harm reduction.
- Eliminate stigma and discrimination in, and integrate health and social programs.
- Service users should regularly review treatment programs.
- Medical professionals should understand legal barriers and be allies in advocating for decriminalization.
IDHDP – International Doctors for Healthier Drug Policies
Priorities: People who are currently injecting should be prioritized.
Treatment and prevention should occur at the same time.
- Once people commence treatment for HCV they soon no longer pose a risk of infecting others.
- Current injectors are much less likely to pass on the virus after only two weeks into treatment.
Action points for change:
- Doctors working in addiction services, front line workers working in harm reduction and outreach services and PWUD peer groups should be provided authority to offer incentives first for people to be tested and then to start, continue and complete treatment.
THE AFTERNOON PARALLEL SESSIONS
- The importance of testing for access to treatment and cure – chaired by Correlation Network
- ‘We are more than just patients’ – Hepatitis treatment and beyond – chaired by EATG
- Meaningful participation of the community in the HCV response – how do we get there? – chaired by EHRA
- HCV practice and policy in Portugal (in Portuguese) – chaired by Apdes, CASO and GAT
The EATG session: ‘We are more than just patients’ – Hepatitis treatment and beyond
The objective of the session was to present and discuss the needs of PUD, beyond those around Hepatitis C, it’s diagnostic and treatment.
Due to a myriad of factors, People Using Drugs, People in Prison, and many other key populations have not only reduced access to disgnostics and treatment of Hepatitis C, but also have higher prevalence of several social and economic needs, including homelessness, unemployment, stigma and discrimination, among others.
This session aimed to provide the view of the community of PUD and civil society organizations who work with these communities in Europe, in order to identify and discuss the main needs of PWUD beyond health and treatment, and what advocacy and services are required to bridge these gaps, and ensure that PWUD have the services and support that they need.
The session included panel presentations, and a debate with the public, and aimed at structuring priorities for future action.
One of the presentations was delivered by our EATG member David Ananiashvili, who unfortunately passed away just a few days after the conference. David was happy to be in Lisbon and to talk about his new project on OST users and social engagement through social media. We shall always remember him as a passionate and dedicated activist and a wonderful person.
The European AIDS Treatment Group would like to thank Eberhard Schatz and Correlation Network for inviting us to contribute to the programme and providing scholarships to support the participation of our members to the event.
This report was written by Mario Cascio
You can download the report here.