The stigma of HIV continues today

Firefighters are heroes because they run into a burning building. They run towards a fire, risking their lives to save others. No one would doubt that they are heroic, but most will wonder how this is even possible. How is it that some people can ignore our innate drives to survive to instead, help others do just that?

Doctors are not typically equated with this type of heroic measure, we give our lives to helping and prolonging the lives of others, but we typically do not risk our own in the process. That is, of course, except in cases of infectious diseases. In these cases, like HIV in the 1980s, doctors had to help patients live, not knowing what was causing the disease, whether it was contagious and how, and whether they, themselves would get sick from it. It is true that in these circumstances it becomes evident just who entered the career to truly save others, as though it is our ethical duty to help these patients, many doctors still will not.

However, the ones that did, the ones that went in when every one else ran away, these are the doctors that are the heroes of our day. These doctors are the ones to thank for the many advances in HIV/AIDS and the doctors to praise for the fact that HIV is no longer a death sentence. It is these doctors that we can trust to handle any sort of epidemic (or even biological attack) by treating the sick, no matter what the risk is to themselves. However, despite the fast advances in both knowledge of the disease and its origins and the drastic evolution of treatment (from dozens of pills with horrible side effects to 1 pill), the fear, the stigma, the ignorance of the population at large, still remains.

I spent my summer doing research on the neurological implications of HIV and its association with depression. In doing so, I shadowed my research mentor in clinic and was astonished by the stories I heard, especially when thinking of just how much we know about AIDS today. Sure, just the shear fact that many patients were open and truthful about incarceration and drug use surprised me. But, the stories of shame were really the ones that made me think.

One patient, a man who we do not know how he acquired the disease, came to the hospital one day after driving his car, crashing it, and being truly demented and confused when the cops/EMTs arrived. His viral load was insanely high and his CD4 count very low, but more importantly, this man had known that he had HIV for over 10 years and had chosen not to take medication and also not to tell his wife.

At first my reaction to this was one of anger at this man. How could he, with how good and how easy, antiretrovirals are today, just choose not to take them? How could he, even still, endanger the life of his wife without even telling her? The answer: stigma. He was an upper middle class married Caucasian man. He was not supposed to get AIDS and because of that, even taking drugs was admitting that he had it, and he did not want to do so. Lucky for him, his wife remains negative, and amazingly, she is remaining by his side, but this story really shocked my system to say the least.

The other week we had a lunch with HIV positive patients so they could tell us their stories and this only fueled my awareness of this situation. More than one of the patients admitted that they did not tell their families (women and men both) for years, for fear of their reactions. Those that did, told stories of family members making them eat their dinners on paper plates and forcing them to drink out of paper cups and sleep on disposable sheets. They said as soon as they ate, or slept, at a family member’s house, anything they touched went in the trash. If that is love, if that is support, if that is understanding, it is no question why many of these patients are depressed and not at all surprising why, so many of these patients keep their status to themselves.

Even still, another patient told the story of how she was at a dentist and the dentist would not let her spit in the bowl. He made her keep everything in her mouth, unlike any other dental patient or even human being, simply because of her status. As a future health provider, this type of ignorance by another provider, shocks me.

Ultimately, if we have evolved enough to stop calling AIDS  “gay-related” immune deficiency disease, how have we not evolved enough to know that we aren’t going to catch HIV from a handshake? In a day and age where AIDS has become a chronic illness, where we have good treatment, and good access (especially in the US), no patient should avoid taking anti-retroviral medications simply because of stigma.

Jessica Gold is a medical student.

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