A patient diagnosed with HIV, hepatitis C and depression, I have been working as a peer helper, educator and community activist for more than 10 years. In fact, my professional career is now mainly building on work I do around HIV and HCV. But it wasn’t always like this…
I was completely devastated when I got diagnosed with HIV 12 years ago. I knew from the first symptoms what was going on – I guess most gay men are relatively aware of HIV and its impact on our communities. But knowing about a disease and accepting it as an intimate part of your life are two different things!
Finding and reaching out to a patient community changed my life forever. This was not an easy process. Living with HIV also means facing stigma and discrimination, which can have a huge impact on your life even if you are otherwise in a comfortable and privileged situation.
When I first met the European Community Advisory Board for HIV/AIDS, I was overwhelmed by the knowledge, self-confidence and momentum that my peers demonstrated and practiced. I walked into a room full of people who could successfully cope with the ordeal of the disease because they were educated about it. This happened shortly after what we call the treatment revolution in HIV, and I could witness how the contribution of the community of people living with HIV had changed the treatment and research paradigms forever.
I learned then very quickly that learning and self-education are key. Knowing more about your disease and its medical and social background is not only empowering but also allows you to make a meaningful contribution to society.
Getting from there to here...
The tradition of people’s involvement in medicines research has a great tradition in the HIV community, and people living with HIV have now been involved in this process for almost 30 years. However, it takes time for the scientific community and the pharmaceutical industry to accept patient involvement in research as the gold standard of good practice; which is why I joined the EUPATI team more than a year ago. I am firmly convinced that patients do not need to fall into the trap of becoming mere subjects to instead of participants, partners, collaborators in research. Experience shows that patient education is a powerful tool to convince everyone around the table in medicines development to accept patient communities as equal contributors and partners.
It was a long and difficult journey for me, but it was also absolutely worth it. Learning has always been my passion, and it is a reassuring experience to see how, over the years, patient communities have become increasingly educated and thus more involved in various disease areas. You may be struggling with the consequences of your disease or the side effects of your treatment, but you decide to learn nevertheless. You not only help put your own problems into perspective, but also help others cope, while making society a better place. I don’t think one can be more content.