As many speakers had over the previous 5 days, former President Bill Clinton invoked the goal of an AIDS Free Generation. He told the delegates assembled before him that their efforts had led us to a place where this goal has become a possibility and that, “we just have to keep pushing the rocks up the hill.” Bill Clinton is a staggeringly bright man. He was a Rhodes Scholar and went to Yale for law school. I would expect such a learned man to better remember the mythical basis of the metaphor he was employing to represent the struggle against HIV/AIDS. A headstrong, hubristic, tyrant of a king named Sisyphus believed he could cheat the Gods. After screwing over everyone and everything in his path, he was given a particularly cruel punishment by the goddess Persephone: to be forced for all eternity to roll a massive boulder up a hill only to see it come tumbling back down each time he reached the top. It is the ultimate fruitless endeavor. Today, the word Sisyphean even means “endlessly laborious or futile.” That Clinton would allude, accidentally or otherwise, to the myth of Sisyphus during the closing speech of the XIX International AIDS Conference is telling when it comes to the concept of an AIDS Free Generation.
This is not to say that there hasn’t been immense progress in AIDS treatment and prevention over the 22 years since the International AIDS Conference was last in America. Back then, HIV was a death sentence and today we have a panoply of medical options to present to patients. In today’s New York Times, Dr. Danielle Ofri, an assistant professor at the NYU School of Medicine, recalls the harrowing days during the epidemic’s beginning when the hospital she worked at was overflowing with AIDS patients just waiting to die. As testament to this, Dr. Ofri offers up the story of the 12 East ward at Bellevue Hospital, where she was practicing at the time. The 12 East Ward was reserved for patients who were “actively dying” and actually had a wait list for people who just wanted a private room to die in. Today, she tells us, 12 East has been turned into offices and the 17 West ward that used to be the hospital’s AIDS ward has reverted back to a regular medical ward. Ofri speaks of the immense progress made in the past two decades with regard to HIV compared to things like cardiovascular disease and cancer. She even goes so far as to say that, “HIV has been easier to target,” than these other diseases because it is only caused by a single infectious agent.
Dr. Ofri is living in a world that is not real. She has, with good intentions, summed up the basic problem of the medical establishment to be able to successfully treat HIV/AIDS in our communities. They are only thinking of the disease in terms of cells and plasma, not people and places. What Dr. Ofri doesn’t mention is that in the for over a decade now, while medical advances have been coming in hard and fast, the HIV incidence rate in America has remained the same at around 50,000 new infections per year. In 1995, when the first of the initial HIV drug cocktails began to be prescribed with some regularity, there were around 750,000 people living with HIV/AIDS in the US. Today, that number is up to 1.2 million, with just a little over a quarter of PLWHA maintaining a suppressed viral load. Maybe I’m a bit dense, but I don’t know how a 60% increase the number of PLWHA in America over the past 15 years warrants a slew of headlines like Imagine a World Without AIDS.
I would argue that’s impossible to imagine a world without AIDS. At least, it’s just as impossible as imagining any of the things on John Lennon’s list like a world without religion or countries. As a philosophical exercise it might be nice, but we need to be thinking about the world with AIDS right now more than some verdant green future. In case y’all didn’t know, HIV/AIDS news is a bit old hat in this country. We held the world’s largest AIDS conference close enough to the White House for Robert Griffin III to throw a football from one building to the other and our fearless leader didn’t even bother to show up. Much of the country thinks that AIDS is something that happens in Africa among people who live off of dirt roads in wattled huts. Yet, members of congress drive through and around a city that has worse HIV prevalence rates than much of Sub-Saharan Africa.
I also have no clue what Dr. Orfi was going on about being chipper about the closing of the AIDS ward at Bellevue Hospital. It certainly couldn’t have been due to a lack of patient demand. According to the most recent HIV Epidemiology & Field Services Semiannual Report conducted by the NYC Dept. of Health in April of 2012, there are approximately 120,000 people living with HIV/AIDS in New York City. To give you an idea of the scale of the epidemic, that is enough people to just about equal the population of Charleston, South Carolina. Beyond that, the report states that 1,749 people were newly diagnosed with HIV in NYC during the first half of 2011 and that 876 people died of AIDS during that same time period. That averages out to 10 newly diagnosed New Yorkers and a day and 5 PLWHA who die in the city on a daily basis. The question on my mind isn’t “what does a world without AIDS look like,” but rather, “where are all of the thousands of New Yorkers in need of acute AIDS care going when the oldest public hospital in America closes its AIDS ward?”
The thing is, I’m not at all pessimistic about the future of HIV/AIDS care in America and abroad. It may sound like it, but I truly believe that a cure for AIDS is possible (if not imminent) and that the vast majority of the 34 million HIV+ people worldwide can be gotten into care. What I am concerned about is the fact that the medical establishment, and many governments for that matter, don’t get the “why” of the spread of AIDS. They understand the “how” and are hard at work trying to develop new ways of defeating the disease inside the human body, but they don’t much seem to acknowledge why it is spreading in the first place. To answer that “why” is to unearth all manner of societal ills that the medical profession is powerless to solve. HIV may be easier to treat on a medical level than more complex diseases like coronary failure and cancer, but it is maybe the most difficult disease to address on the community and personal level that humanity has ever seen. HIV is a social disease. It is spread through fear and silence and ignorance. Homophobia fuels it faster than kerosine thrown into a campfire. Strict anti-drug laws that prevent things like clean needle exchanges and safe places for addicts to use create situations like that in Ukraine and Russia, where the IV drug community is being engulfed by HIV infection. Abstinence-based education fosters an environment where teenagers are ashamed to talk about sexual issues and are wholly unprepared for the moment when they do have sex. Poverty and HIV infection are inextricably linked as we can see not only in third world nations, but in places in the rural American South that have become third-world nations unto themselves. Where will these problems be in an AIDS free generation?
Most importantly, talk of an AIDS free generation takes focused off AIDS filled generations that are alive today. The true mark of success in this epidemic is not going to be a world without AIDS. We found a vaccine for Polio 3-4 generations ago and its still around, so I’m not holding my breath with regards to AIDS disappearing in my lifetime. Success will look like this: plummeting incidence rates and slowly climbing prevalence rates all across the world. Through treatment as prevention, comprehensive sex education and earlier access to care for the newly infected, we will hopefully see the number of newly diagnosed PLWHA drop off. But, we counterintuitively must have the prevalence rates rise before they can ultimately fall. This is because that today, if prevalence rates fall dramatically, it means only one thing: people are dying faster than they’re being infected. Maybe in 30-40 years, after people in the HIV community today have lived full, healthy lives and infection rates are miniscule, the drop in worldwide HIV prevalence will be welcome because it means people are dying of natural causes and other age-appropriate diseases. But now, if the prevalence dips it means that millions of men and women are dying well before their time. To have an AIDS free generation with any rapidity means the death of those living with AIDS in the here and now. I propose we focus less on an AIDS free generation and redouble our efforts in helping the generations of today living with HIV/AIDS. All rhetoric around an AIDS free generation does is further inoculate the public to the realities and the needs of the 21st century fight against HIV. Go down to Mobile, AL and ask them about an AIDS free generation. Head into the heart of Oakland or Baltimore and tell people how great the fight is going. In the conclusion of her article, Dr. Orfi writes of the closing of inpatient AIDS service in Bellevue Hospital that, “If that doesn’t signify the beginning of the end, I don’t know what does.” It’s the beginning of the end all right, except the end in question isn’t AIDS, but the public awareness of AIDS. Imagination can be a deadly thing when it eclipses reality.