"I'm going to be in the New England Journal of Medicine," a patient once told me proudly. "Not me exactly, but my X-rays." It was the happiest I had ever seen him. He was the first AIDS patient I had ever treated. Fevers raged through his body, pneumonias wracked his lungs, and purple splotches covered his skin. Yet he tried to stay cheerful and look for scientific advances and signs of hope. He tried yoga and a macrobiotic diet. But we had no effective treatment to give him.
Sadly, he died shortly thereafter.
I still think of him -- of how little we could help.
This week, we celebrate World AIDS Day -- and for once, there is a lot of good news. Coincidentally, this year also marks the 30th anniversary of the first reported cases of gay men dying of rare opportunistic infections -- symptoms of what would later become known as AIDS. Thus, it is an important time to reflect on how far we have come, and where we have left to go.
For years, international AIDS conferences were very somber. A chill would run up my spine as I sat in dark vast lecture halls, hearing more bad news. The numbers of patients rose ever higher around the world. Prevention was failing. No treatment worked. AIDS quilts would hang around us -- grim reminders of our losing battle.
Yet in the past year, as studies have been published, suggesting new advances, the mood in the HIV/AIDS community has suddenly changed.
New research suggests possible solutions. Taking medication as "pre-exposure prophylaxis" or "PreP," while still uninfected, can dramatically reduce a person's chance of getting infected, even after exposure through high risk behavior. Other studies show that testing and starting treatment early can also help stop the development of symptoms, and the risk of infecting others. The numbers of cases each year worldwide and in the US have plateaued.
Many people see these new developments as extraordinary -- close to miraculous. These advances came far too late for my patient, but are now helping countless others.
Few other developments since I graduated from medical school have been as dramatic -- thanks to patient advocates and activists, scientists, and physicians all working together. We should celebrate the success -- an example for other causes of how grassroots passion and commitment can alter governmental policies. I am inspired to think of what other diseases and problems we can similarly stymie in the future.
Yet increasingly, as a result of this success, many people think we no longer have to worry about this disease.
Unfortunately, of the 34 million people in the world with HIV, about 80 percent do not receive treatment. In part, problems result from tenuous health care infrastructures in the US and the developing world. Due to costs and stigma, millions of infected patients do not come to clinics to seek testing, or start or continue treatment. These barriers need to be addressed.
Currently, both in the US and abroad, disparities are widening. Both within and between countries, the gap separating the haves from the have-nots is growing. In many countries, wealthy uninfected individuals can now afford PreP, while poorer people cannot, making AIDS more of a "poor person's" disease, widening gaps in health. Once again, HIV highlights global disparities that require attention.
Poor countries that cannot yet afford to treat everyone who already has AIDS now confront additional dilemmas of whether to divert resources from sick patients to those who are not yet infected. Many advocates for people with HIV oppose shifting resources away from their needs, seeing PreP as a way of helping drug companies.
Particularly given the world's economic problems, debates are increasing over who should pay for all of these types of treatments - both in the US and abroad.
The US has sought to exercise "soft power" in several domains -- showing the world that it can be a force for good. HIV represents another such area where such efforts can help.
Other problems emerge, too, because people may now engage in even riskier behavior than they would otherwise, feeling "safer" and less afraid of the disease. They may use condoms less frequently, which could potentially counter the beneficial effects of the drugs.
Stigma and discrimination also continue. In many countries, hostile policies toward injecting drug users and gay men further fuel the virus' spread.
When my patient was in the hospital, the staff often avoided his room. When dropping off or picking up his food trays, they would don rubber gloves and full body paper suits. He and others talked about his pneumonia, but not his AIDS.
We have come far, but still have a long way to go.
I will never forget this patient and others like him -- not because of what we could do.
But because of what we couldn't.
And at times, still can't.
Peter G Tatchell: Government is Failing on HIV
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