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“I’m not a medical anecdotal case. There is a large group of HCV patients in urgent need of new drugs, more efficient and with less adverse side effects”

Interview with Luis Mendão, community speaker on Hepatitis C during the 18^th International Conference on the reduction of drug related Harm Warsaw, Poland

Peter: Luis, you talked in one of the mayor sessions on Hepatitis C prevention, treatment and living with HCV (hepatitis C Virus). You have been chosen to talk about this subject: what is your personal background?

Luis: My name is Luís Mendão, I am Portuguese, 48 years old, retired.

In 1996 I was diagnosed with stage C3 AIDS, with 2 CD4 cells, a viral load of over 500 000 and multiple opportunistic infections (CMV retinitis, PCP, etc.). Today I have an undetectable viral load for HIV and 800 CD4 cells.

In 1996 I was also diagnosed with hepatitis C, 1a genotype with a viral load of 6 millions. I smoke (a lot) but I do not drink alcohol.

In 2002, after a liver biopsy showed grade 4 fibrosis, I took pegylated interferon and ribavirin for 12 weeks with no results whatsoever but with serious side effects.

I have no credible treatment options at present for hepatitis C. My death risk from liver disease progression is much higher than from AIDS.

I would like to point out that I’m not a medical anecdotal case. There is a large group of HCV patients in urgent need of new drugs, more efficient and with less adverse side effects.

Peter: how did you get involved into community work on HIV and hepatitis C?

Luis: My social commitment begun with the student movement against the Portuguese fascist regime. During the eighties we started a group aiming at drug policy reform (later the NGO Soma-APA) in which I’m still involved. I currently work as a volunteer with the community patients based organisations GAT on HIV/AIDS issues and with SOShepatites, both organisations are based in Portugal. At European level I work with the European AIDS Treatment Group.

Peter: What is the benefit of community involvment? Why is it important that people living eth the disease speak up?

Luis: Well, I tend to dislike speaking about my personal life. But I do recognise the importance of personal testimonies. It is very important that people living with the disease are taking the opportunity to talk about themselves and to presen some of the concerns and proposals from the community of affected and infected HCV people.

I very much believe that we must be part not only of the problem but of the solution as well.

I am convinced that the meaningful involvement of People Living with HCV is crucial.

Peter: how should this involvment look like? And why is it crucial?

Luis: Our involvment should include all levels of public health policies and programs to tackle down the incidence and to control the epidemic. Our integration as peers should involve program planning, designing, implementation, program monitoring and evaluation.

How crucial the involvment of people living with the disease is obvious when we look at the self help structures created by people living with HIV/Aids in many European countries. In comparison the Hepatitis C movement seems me to be way behind of this.

I would like to commend WHO-Europe for being, in recent years, an example for including patient representatives in their work. For us this is very empowering.

Peter: this does have a lot to do with health policies …

Luis: Sure. Living in Europe, in 2007, we can not accept proposals for solutions that don’t respect the values of democracy and freedom. Health policies and designed programs have to have respect of human rights and of patients. The right to universal, to health care and treatment, the right to confidentiality of personal health data and the right to protection against persecution, discrimination and stigma has to be secured. Again, the involvment of people living with the disease is crucial to reach these goals.

Peter: What are currently the main obstacles people Living with Hepatitis face? What exactly should be done?

Luis: There is a lack of political leadership to put Hepatitis C on the public agenda. We have to raise awareness in the societies. We need a global European Commission Strategy to fight hepatitis in the European Union and neighbouring countries. This strategy has to be evidence based, using the best scientific knowledge in epidemiology, public health, behaviour and treatments. Again, Civil Society and community has to be included - because we have meaningful knowledge, our expertise based on living with the disease is of high value, nobody else possesses this experience.

Public powers, who ignore the best knowledge available in defining public policies when addressing existing problems, will fail to deliver good governance answers.

Peter: Are there gaps in research?

Luis: It is crucial to plan and fund research to answer the knowledge gaps we have in transmission, in treatment for people using drugs. We need more research for treatments for people using drugs, to explore side effects etc. There is little known about side effects with intravenous cocaine and amphetamine like use, etc.

Peter: HCV Infection rates among active intravenous drug users are very high. Some sources estimate 80–95%. What about treatment for drug users?

Luis: We have to provide full access to hepatitis care and treatment for all those in need without discrimination. This of course includes people using drugs. In reality, people using drugs are very often excluded in treatment programs. There are many wrong assumptions and prejudices about the possibility to treatment people using drugs “on the marked”. Doctors and health personnel believe that their compliance rate would be insufficient etc. Results of studies indicate clearly that this is not the case if people using drugs are enrolled in drug treatment programs and in contact with health workers without judgemental attitudes.

Peter: what about prevention activities among people using drugs?

Luis: we have to be aware of the fact that, unlike other viral hepatitis forms, we don’t have a vaccine for HCV. Re-infection is always possible. The vast majority of incidence of infections with HCV is now acquired trough injection drug use unsafe practices. We have to train people how to prevent HCV. Needle and syringe exchange programmes are very much needed, especially in places where many people are living with the disease, for example in prisons. But I am not an expert on this.

Peter: Why don’t you focus on hepatitis C and drug use?

Luis: (laughing) … many, in the community I represent, firmly believe that the use of addictive and psychotropic substances exists and always did exist in all human societies. That prohibition and criminalisation of the use or abuse of illicit drugs not only didn’t eradicate production, trade and use but did lead to the growth of a huge, criminal black market, harming democracy, economies, justice systems and public and individual health. The fact that people using drugs are often excluded from hepatitis treatment correlates with their criminalisation, and, to go further: it might be one aspect of it.

We believe that together with efficient prevention of drug use campaigns, providing universal access to drug addiction treatments, our societies must also learn how to live with drugs in a less harmful way.

Peter: what else needs to be addressed to get universal access to prevention and treatment in order to tackle down the HCV epidemic?

Luis: Interventions of primary prevention directed to IDUs in situation of vulnerability are fundamental to the reduction of HCV transmission rates. These programs must answer the specific needs of the people they are directed at, they should not be judgemental and integrate Harm reduction services.

People using drugs need complete and rigorous information about the use of injectable drugs, on how to avoid contracting the virus and must make adequate means of prevention available (complete injecting paraphernalia and information for use). For these populations, we must not mix dissuasion campaigns about drug use with HCV transmission prevention messages.

Again, the message must be clear, not moralistic and provide information on how not to get infected.

Campaigns, programs and interventions should not contribute to a rise in discrimination, stigmatisation and marginalization of the people they are aimed at. They must have the exact opposite effect to be effective. Lack of coverage in syringe distribution, rationing, incomplete injection paraphernalia are having devastating effect on hepatitis C incidence. We see this on the high infection rates at places where low threshold interventions don’t exist and programs are based misbelieves on IDUs.

Interview by Peter Wiessner from EATG

Etiquetas: drugs, Hepatites, prevenção