Tamás Bereczky: Patient advocacy and the HIV community

I have been working as a patient advocate, peer helper, treatment literacy trainer and policy advocate in the HIV/AIDS field for more than a decade now. HIV is no longer looked at as a standalone illness, instead we talk about a syndemic that is described as the combination and concurrent appearance of HIV, hepatitis C (HCV), substance use (which is now also considered a mental illness and a complication of depression), and tuberculosis. Various settings in the world see different combinations of these illnesses, and there are different configurations or patterns of how these illnesses affect key populations, depending on the social, political, and cultural landscapes. There are few illnesses that are as situational and socially determined as HIV and concurrent conditions.

My involvement as a person living with HIV, depression, and formerly also HCV is deeply personal. For years I was wondering how it could happen that I, a white, middle-class, relatively wealthy, educated gay man had not had sufficient information and care to prevent these infections (and subsequent depression) from happening to me? Why wasn’t there enough information? Why does it keep happening in my region? Why are infection rates consistently higher in Eastern Europe in all affected populations than elsewhere? My decision and commitment to work as a patient advocate started from this stance: I want to tell two things to my peers. One is that HIV and HCV are preventable illnesses. The other is that HCV can be cured if there is access to good quality and affordable medication, and that there is such a thing as a liveable life with HIV.

This is an increasingly difficult task in Central and Eastern Europe and Central Asia. These regions are currently the places where the HIV and HCV epidemics are rampant—in many cases the situation in Eastern Europe is much worse than it was on the African continent 20 years ago. People keep dying of AIDS and tuberculosis—both preventable causes of death. Stigma and discrimination against HIV are aggravated by layered stigma against key populations like substance users, men who have sex with men, or sex workers of all genders. While there is compelling scientific evidence that treatment of HIV is prevention, and while HCV has become completely curable in up to 96% of the cases, access to life saving medicine and curative interventions are missing or impossibly difficult to reach in several countries of the region, including Russia or Ukraine.

Advocacy around access to treatment, human rights, and for access to affordable medicines is essential. For example, generic drugs saved South Africa from an even bigger devastation by HIV in the nineties, however, the same generic medicines remain unavailable or inexplicably expensive in Eastern Europe. And the patient community is often weak, impoverished, and disadvantaged. Where patient advocacy can play a massive role is through education, outreach, and direct, hands-on activism such as obtaining pharmaceuticals for patients who are in need.

The HIV community has been one of the leaders and inventors of patient activism globally. Aptly documented by Epstein [1], Patton [2] or even our fellow patient author Matthias Wienold, this movement now embodies the genes of patient activism and advocacy from violent street protest against the death of thousands of AIDS patients to high level diplomacy with the leaders of the UN. However, this knowledge is worthless unless we can spread it to other patient communities and the civil society at large. This may be even more difficult in settings that, for historical reasons, have a weaker civil sector than in Western Europe or the United States.

As a member of and contributor to the European AIDS Treatment Group, I am in a privileged position to access first-hand information and to tap into the resources and knowledge accumulated by the global HIV movement. I want to make sure that I can use these resources to help my less privileged peers, but also to help others in the prevention of HIV, HCV, and tuberculosis.

Tamás Bereczky is a gay, HIV positive father living in Budapest, Hungary. A linguist and social psychologist by profession, Tamás currently works as the communications officer of EATG, the largest network of individuals living with HIV in Europe. His latest project is the “Other 364 Days When It’s Not World AIDS Day” video blog.

Competing interests: None declared.

[1] Epstein, S. (1995) ‘The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials’, Science, Technology & Human Values, 20(4), pp. 408–437. doi: 10.1177/016224399502000402.

[2] Patton, C. (1991) Inventing AIDS. London, United Kingdom: Routledge.