Adventures in Ethics and Science

Worrying about AIDS.

This month’s issue of Seed looks at HIV/AIDS 25 years in, and you may have noticed that ScienceBlogs has an AIDS at 25 blog dedicated to covering the XVI International AIDS Conference in Toronto. So, it should come as no surprise that the current round of “Ask a ScienceBlogger” features a question about AIDS:

To what extent do you worry about AIDS, either with respect to yourself, your children, or the world at large?

Twenty-five years ago, I was 13. And, since I grew up in one of those households where we got the science-y magazines (and undoubtedly, would have gotten Seed had it existed), I have vivid memories of reading the early stories trying to put together the epidemiological clues to figure out just what AIDS was, how it spread, and how one could or could not get it. My entire life as a teenager had AIDS as its backdrop, with varying amounts of panic about who was at risk and what the outlook was for those who got it.

In college, I knew people who feared they might have been exposed to HIV, and I had friends trying to figure out how to support friends who were infected. For young adults trying to navigate a world of adult relationships, pregnancy was still the biggest worry, but AIDS was right there to deepen fears about trust. While “safer sex” strategies were widely publicized (at student health centers and dorm workshops), and there was fairly little concern (at least among Boston-area college students) that “casual contact” was likely to be contagious, we were suddenly in the realm of a disease that a course of antibiotics wouldn’t bring under control. In fact, when I started college there was no good treatment that people were aware of (AZT came later, and the anti-retrovirals later still) … and pretty much everybody knew somebody who had experience condom failure. So there was a higher background level of fear that was a permanent feature of the landscape.

I’ve been in a stable relationship for a long time (and am not an IV drug user nor a recipient of blood products), so I don’t worry about getting AIDS myself. Indeed, I probably have more to worry about from diet, exercise, sleep habits, California sun, and California drivers. The caution that came from growing up alongside the AIDS epidemic may have something to do with the fact that I’ll get to worry about the infirmities of middle age.

I am concerned about the people I know who are living with AIDS — their sniffles and aches stress me out more than other people’s do — but I am also grateful that there are therapies available that have made AIDS more like a manageable chronic illness and less like a quick downward spiral. The treatments aren’t perfect, and the virus is crafty, but the prospects for living with HIV and AIDS are surely better now than they were 25 years ago.

My kids are pretty smart, and they will have much better information about HIV and AIDS than was available when I was growing up. I do worry about the teenager-perceived-invulnerability, but that will encompass more than just AIDS, I’m sure.

To the extent that I worry about AIDS, my fears have to do with the larger scale. I worry that our health care policy (not to mention fear of dealing with certain topics in high school and junior high health classes) will make it harder for people to get good information and adequate treatment. I worry that the proliferation of unfiltered information on the internets (and flabby critical information skills on the part of lots of people with computers) might spread misinformation along with the good information. I worry about the global impacts that might flow from countries where significant portions of the population in the prime of life fall victim to AIDS, leaving the elderly and children to shift for themselves.

In some ways, the problems that come from AIDS were always with us. AIDS just cranks them up a few notches. Maybe this could spur us to pay more attention to our connectedness to other people in our own country and in other countries, or to the consequences of our choices about how to allocate our resources. Or maybe we’ll just get really good at ignoring the problems, or at trying to get someone else to solve them.


  1. #1 Bill Hooker
    August 12, 2006

    when I started college there was no good treatment that people were aware of (AZT came later, and the anti-retrovirals later still)


    there are therapies available that have made AIDS more like a manageable chronic illness

    With respect, Janet, this is simply not true, and it’s dangerous in that it seems to be the idea (“well, even if I get AIDS, it’s not a death sentence any more”) behind recent upswings in new infections.

    There are STILL no good therapies: there is no cure, and even the best (most effective, lowest side effect profile) drug combinations are nothing you’d want to take. In a relatively short time for many patients, the side effects become so unpleasant that patient non-compliance is a more important factor in treatment failure than viral mutation (or at least this was all true a couple of years ago, when I began to lose touch with the field).

    Further, effective therapies are available to rich Westerners, who are not the hardest hit demographic by a long shot. The idea that AIDS is “not so scary any more” is simply not one that we want gaining any currency anywhere.

    Sorry to rant; hot button issue. I used to work in HIV research.

  2. #2 Janet D. Stemwedel
    August 12, 2006

    Bill, the operative words were “more like”. While HIV infection is nothing you’d ever want to get, the people I know who have been on the ARVs have had years of living reasonably normal lives, which is not how things were in the early years of the epidemic. This strikes me as an improvement.

    Yes, we’re doing a crummy job treating HIV and AIDS in poorer countries, and a cure (or a vaccine) would be much better than what we’ve got now. Yes, the totally preventable upswing in new infections makes me crazy. AIDS is still scary, but we know more than we did, and some of what we knows seems to help a little.

    (Also, you know you’re always welcome to rant here!)

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