Today is World AIDS Day.*
It has been three decades since the first young gay men started getting Kaposi’s sarcoma. Many people, including me, have never lived in a world where sex couldn’t kill you. 33 million people across the globe are currently living with HIV?
So, uh, why do we still stigmatize people with HIV/AIDS?
Stigmatizing a disease is pretty much the stupidest public-health choice ever. I know, I know, it’s sex and God help us if we don’t end up trying to control what’s going on in everyone’s knickers. I mean, think of what might happen if we didn’t! People might start having happy, mutually enjoyable sex lives that are (gasp) slightly different from our own!
Admittedly, there is one obvious source of the stigma around AIDS: it kills. People really do not like diseases that kill; many people may want to avoid getting tested because they don’t want to know, and avoid people with HIV because they are afraid of contracting it by fucking magic. However, AIDS is no longer an automatic death sentence. With luck and retrovirals, a HIV-positive patient may well survive long enough to die of something else. Many don’t ever develop AIDS.
Scaremongering abstinence-only sex education aside, HIV is not necessarily going to kill you; however, you have to know about it early for best results in the treatment. That’s why regular testing for HIV is so important, particularly for people in high-risk groups, such as sex workers, men who have sex with men and people who inject drugs. There is no reason to be afraid of contracting AIDS; there is reason to responsibly manage your health.
However, the source of the stigma is deeper (after all, no one skips mammograms because they don’t want to know). For many STIs, the biggest stigma is for women and is around being a Slutty Dirty Slut Person Who Sluts About The Place Being Slutty. However, in the United States, three-quarters of people currently living with AIDS are male, and their stigma is primarily a male-oriented one.
Even today, AIDS is still primarily considered a “gay disease”– just ask any of the charmers who call it “God’s plague on homosexuals” (lesbians must be God’s chosen people then) or explain that gay is an abbreviation for “Got AIDS Yet?” Even more liberal-minded sorts may consider HIV to primarily be the business of queer men and, if they think of it, IV drug users.
Of course, the whole “AIDS=gay” thing is completely wrong. Thirty percent of men living with HIV did not contract it from sex with men (including more than ten percent who got it from heterosexual sex). The majority of people who have HIV or AIDS are men who have sex with men, but there is a very significant minority that isn’t, and anyone can get AIDS.
But even beyond that, the association of HIV/AIDS and homosexuality has a huge stigma effect for men. Gay and bi men who are closeted or on the downlow may fear to get tested because someone might know. Straight men will not get tested, because, hey, they don’t have to get tested, they’re straight. Besides, if you get tested, you’re like a gay man, and as we all know being gay is absolutely the single worst thing that can happen to a man bar none and impugns his masculinity for forever and a day, amen.
You can see the effects of this stigma in socially conservative regions of the USA, such as the South. The South has among the highest rates of death from AIDS in the United States. Andrew Skerritt, an expert on AIDS in the South, attributes the high death rates to “a conspiracy of hypocrisy, shame, false morality, cowardice and political opportunism.” Pastors won’t encourage condom use because they think it will encourage people to have sex. People are afraid of being tested because someone might see them, or of contracting HIV because they (far too often rightly) fear getting shunned.
As a doctor at San Francisco General’s HIV/AIDS ward says, “We have the medications. You can survive HIV, no problem. But can you survive the stigma?”
The stigma around HIV/AIDS infections has even worse public policy implications. Particularly in the South, AIDS awareness is an afterthought, with no billboards or PSAs reminding one of the importance of using condoms or getting tested (as odd as that seems to someone like me, who grew up in one of the counties with the highest rates of AIDS infection in the US, and correspondingly got HIV education starting in kindergarten). 34 states and two territories criminalize exposing someone to HIV; some people have gotten sentences of up to 30 years, even for consensual behavior without HIV transmission. Clean needle programs are somehow still controversial.
Imagine if we took the same policy about lung cancer. Some people get lung cancer through making stupid decisions and smoking, the same way that some people get HIV through making stupid decisions and having promiscuous sex with untested partners without condoms. However, many people get lung cancer through pure shitty luck, the same way many people get HIV through pure shitty luck– just ask hemophiliacs, Isaac Asimov, people who contracted HIV through rape, or even people whose True Love Waits purity rings didn’t protect them from a partner without similar ethics.
In either case, the consequences would be terrible for individuals. A decrease in testing rates for fear you have the horrible sickness. Hiding their disease from their families, friends or jobs for fear of shunning or exclusion. A decrease in self-worth because you know you have the sickness everyone loathes, and you wonder what you did to deserve it.
But AIDS is not a Scarlet A of sexual sin. It is an illness. It is an illogical public health policy to treat it otherwise.
*Sharp-eyed people may note that this is going up, in fact, the day after World AIDS Day. I got distracted by Gargoyles halfway through drafting it. But nevertheless it got itself started on World AIDS Day, so I’m counting it.
About ozyfrantz
“So, uh, why do we still stigmatize people with HIV/AIDS?”
Because if we don’t, then we have to actually *talk* about people having sex outside of the boundaries of “one man/one woman marriages where sex is, properly, for procreation.”
TCW
“Unfortunately, saying that 30% of AIDS patients aren’t gay is not going to carry much weight for the crowd that focuses on the fact that 70% are. You have to also take into account that gay men are what, only 10% of the population? So 10% of the population has 70% of the disease, at least on the back of an envelope (I don’t know the real figures). It still looks like it’s a “gay” disease and I don’t necessarily blame people for believing that. What I do want to know is why it’s a “gay” disease.”
10% is a drastic overestimation of the percent of the population that is gay. That figure comes from the Kinsey study, which suffered deeply from self-selection bias from its test subjects. (In those days, you couldn’t commission a study like that through proper scientific means. He had to gather up volunteers himself. Male prostitutes and the sexually adventurous made up a disproportionately huge percentage of the volunteers. You can see where the problem is.)
3-4% is a more likely estimate, for gay men. The percentage of women who are lesbians is generally considered lower by a significant margin, for reasons we don’t properly understand.
“I do think that AIDS isn’t a “big deal,” but for fundamentally different reasons than you, Ozy. It’s just too expensive to treat and research, versus the number of people who suffer from it.”
But this is true of any disease that only affects a small proportion of the population, which is most of them, and that can’t be cured, only treated. I’m not aware of anything that makes AIDS special in this regard. You could say the same about hepatitis C or autism. Increasing social stability will help greatly, as you said, but it’s no substitute for medical research.
“saying that 30% of AIDS patients aren’t gay is not going to carry much weight for the crowd that focuses on the fact that 70% are”
This is inaccurate. The correct statistic is that 70% of men in the United States (not “AIDS patients”) who are currently living with HIV contracted it via sex with another man (not “are gay”). Worldwide the majority of people with HIV/AIDS are heterosexual women, and in the United States, the demographic group with the greatest increases in HIV infection recently has been heterosexual black women.
While it is true that men who have sex with men are disproportionately likely to be HIV+, the continued focus on HIV/AIDS as a “gay disease” means that many people who are not MSM believe that they are not at risk, or that their personal risk is low, when that may be profoundly untrue.
Autism is not a disease like the flu or hepatitis, it’s a differently-configured brain, and it’s not physically fixable (curable), the same way you can’t make someone “not be trans” or “not be gay”, at best you can make them deny it to their own deaths.
Schala, please don’t… don’t say things like that. That gets too far down the road of “you can’t change someone’s sexuality” when it looks very much like that is, in fact, possible. The cry shouldn’t be “you can’t change us!” because that’s a) not true and b) leaves room to interpretation of maybe we do need to be changed. Say instead, “there’s no reason to change us!”
@pocketjacks – As long as there is an attached stigma, the number of people who admit to being gay or bisexual will always be smaller than the number of people who actually are gay or bisexual. Even when the surveys are completely anonymous. I don’t doubt that Kinsey’s numbers were a little high, but I think 3% is a little low.
“MSM,” as the health industry is calling them now, since there is an ever-increasing number of men who have sex with men but maintain that they are straight, are a big hazard. They are far less likely to get tested for HIV for the reasons Ozy outlined. They are also less likely to use protection when having sex, making them a prime demographic for high rates of infection.
@Fnord, thanks for the link. As I see, preventing a baby from getting AIDS can cost anywhere from $150-$300 all the way up to $11,000 per child. I admit ignorance to the effectiveness of each treatment. If it’s possible to do for $150, why do people choose to do it for $300 or even $11,000? But that’s besides the point. The point is, it only costs $10 to prevent a disease such as Malaria. Malaria infects 250 million and kills 1 million per year. Incidentally, malaria has been found to increase the spread of AIDS: http://news.bbc.co.uk/2/hi/africa/6220072.stm
“If it’s possible to do for $150, why do people choose to do it for $300 or even $11,000?”
They don’t choose to, they have to. It’s a function of geography: the newest and most effective anti-HIV drugs can’t legally be produced as generics in the U.S., so a course of treatment that may be available for $150 in India costs $11,000 here. See http://www.avert.org/generic.htm.
dungone… I’ve been trying to write a well-reasoned response to the idea that it’s “just too expensive” to treat HIV/AIDS, but I’m fundamentally absolutely baffled by that claim. There are nine countries in sub-Saharan Africa where more than 10% of the adult population is HIV-positive — in some countries the infection rate is nearly 1 in 4. (Data from the UN: http://www.fao.org/FOCUS/E/aids/aids1-e.htm) What do you think would be the economic impact if 25% of the adults in a generation die of untreated AIDS — leaving behind children and elders with no one to support them, potentially infecting others before they die? What effect do you think that will have on social stability? (Hint: in sub-Saharan Africa, since 1985, AIDS has killed ten times as many people as war has.)
@Eli, thanks for the link but as it turns out, based on your link, I will say that this issue of why it actually costs so much is besides the point. So is MSM vs gay. Both issues are actually very complex and don’t really change any of my arguments in any practical way. For example, if a patent holder charges $11,000 for a treatment or even $22,000 for a treatment, it doesn’t matter because treating another disease, such as malaria, are always cheaper irrespective of any patent considerations. Ultimately from a practical sense, the fact that there are intractable issues with intellectual property laws is an even bigger argument in favor of spending less money on AIDS itself and more money on things that will save more lives and also prevent AIDS.
What I see in this whole mess is that we, as Americans, are so focused about ourselves that we are willing to spend one thousand times more resources on a single American baby than we are on a baby in Africa. And this is true in every economic sense. It’s ultimately irrational to make any long-term investment in Western society when, dollar for dollar, investing in places like Africa and India will result in a much greater return on the money.
@Dugone:
In addition to Eli’s point, there are different levels of treatment. As I understand, the most cost-effective treatment is minimal, only two doses of antiretrovirals, which is not very expensive. But it’s also not very effective on an individual level. It’s cost effective because it’s very cheap per treatment, so even though it often fails, you can give it to enough mother/child pairs to save more lives in aggregate. It’s not always easy, though, to say “we’re going to give you an inferior treatment that has a decent chance of causing your baby to die, because we need to save money.” There are also other factors, notably the availability of formula (or, I suppose, wet nurses or milk banks, but I don’t usually see those discussed). Breast-feeding from an HIV-positive mother significantly increases the risk of transmission unless a longer (more expensive) treatment is used.
Contrawise, I’m highly skeptical of your malaria number, which seems to assume that each net equals an averted case of malaria, which simply isn’t true.
See here: http://givewell.org/international/technical/programs/insecticide-treated-nets
People who use bed nets can will still catch malaria and not everyone who fails use receive a bed net develops (an active case of) malaria. And, of course, a single net doesn’t last forever. Don’t get me wrong, malaria prevention is up there among cost-effective programs, but $10 is an exaggeration (also, malaria is a comparatively straight-forward problem, with fewer of the confounding cultural issues or less cost-effective alternate treatments, which makes things easier).
@Fnord, we’re starting to compare apples to oranges because the diseases work differently. The fatality rate for AIDS and malaria are different, as is the infection rate. Malaria treatments don’t necessarily have to save lives, but prevent infections, which can save future infections even years down the line. With a big enough effort it’s possible to eradicated malaria at a reasonable cost per life saved. AIDS treatments, on the other hand, are not currently effective at stopping further infections in any meaningful way.
I wasn’t looking just at the fatality rates (looking just at fatalities, malaria prevention is significantly more expensive, ~$2000 per life). The data I linked to includes the greater effectiveness of bed nets when they’re universally used in the community. Note greater, not perfect; bed nets, even if universally used, won’t remove malaria from a community.
Keep your fingers crossed about RTS,S, of course, although we haven’t even managed total polio eradication despite the vaccine.
@Fnord, you’re right I’m sorry. It is that $2000 per life figure in your link that I had an issue with, since fighting malaria is not necessarily “per life” kind of fight, but more of an “it’s all gone” effort. And no, universal bed nets alone won’t remove malaria, but with with a broad effort, it seems realistic. And yes, ditto on RTS,S. If Tennessee could get rid of it in the 1930′s, Africa should be able to in the 2010′s. One of the interesting issues is that even in many malaria prone areas, the disease still trends along economic lines, with urban areas having it under control while rural areas being at it’s mercy. So it’s really just a question of better funding, vaccine or not. And if I were running the show, I would consider doing it even at the expense of AIDS in the short term, to be able to eliminate it and get even more funds towards AIDS in the long term. I can’t help but think that we are are managing diseases in the developing world through a Western mentality. We don’t have malaria in Europe or the US, but we have AIDS, and that affects how our R&D money is allocated as well as where our nonprofit charity funds go.
I seem to recall that the first cases were in 1955, not “three decades” ago.
The CDC’s first report of a strangely high incidence of opportunistic infections in young gay men was published in June 1981 — this is what is referred to in the first sentence of this post, and it’s what brought AIDS (or GRID, at the time) into the worldwide consciousness.
The earliest suspected case of AIDS does date to 1955, and the oldest HIV+ blood and tissue samples are from 1959 (in the Democratic Republic of the Congo). In fact, it’s thought that HIV made the leap from simians to humans as early as 1908. But that evidence wasn’t uncovered until decades after what’s now considered the start of the HIV/AIDS pandemic.