In Philip Roth's 2010 novel, Nemesis, the residents of Newark blame the polio epidemic sweeping through their city in the summer of 1944 on a variety of culprits: it must be the Italians...the Jews...the drinking fountains...the heat..the playground...the playground director, a healthy young man denied by the military because of poor eyesight...Somebody has to be to blame.
When the cause of an epidemic is poorly understood, fear, scapegoating, and stigmatization of those infected will prevail. Such has been the case with plague, leprosy, polio, swine flu, and many other infectious diseases, especially HIV.
Now, in a further step towards bringing human immunodeficiency virus out of the shadows, the FDA has approved a home HIV test.
Before I say more about the test, let me offer a personal anecdote that may lend some historical perspective. The scene is a restaurant in Baltimore. The time, the early 1980s. I am a medical student having dinner with my husband. Two middle aged couples sitting next to us start laughing and chattering nervously. It seems that the women aren't sure if they've mistakenly drunk from each other's water glasses. "Are you gay?" asks one. "No, are you?" asks the other. Laughter. "But are you Haitian?" asks the first. "No, but I do shoot drugs!" Hysterical laughter.
I might not have remembered this scene at all--a couple of silly, possibly drunk people in a restaurant--if their attitude had not been so thoroughly enforced by the officials of the hospital in which I was training. At that time the cause of HIV (or AIDS, as it was called) and how it was transmitted were not fully understood, and so the patients who had it rather than an infectious agent, were thought to be the problem. The thinking was that if you weren't Haitian, a gay man, an IV drug user or a hemophiliac (who receives many transfusions), you would never get the disease. Isolating yourself from such people physically and psychically was thus important. In these days before universal precautions (routine use of gloves when handling body fluids), special signs were posted on the doors of the rooms of patients with risk factors for AIDS, whether they had it or not. Some surgeons refused to operate on them. They were scary, dangerous, other.
Gradually, as the human immunodeficiency virus was identified, as it became clear that heterosexuals, children, everyone is vulnerable, and as treatment has made living with the disease for many years possible, our perception of HIV and those who are infected with it has shifted.
The main medical challenges regarding HIV now involve delivery of medication to areas of the world where the infection is epidemic, development of a preventative vaccine, and identifying the many people (up to 20%) here at home who are infected and don't know it--and who could benefit from treatment and are at risk of infecting others.
The FDA's approval of home testing despite concerns about how people may react to a positive test or the imperfect accuracy of the test, is a reflection of how crucial it is to bring those who aren't aware that they're infected to medical attention.
It also represents a step in the evolution of our thinking about HIV--an infection that, starting this fall, you can test for in your own home, an infection caused by a virus, and not by people who don't happen to be like us.
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