The Transformation of AIDS: Polarization of a Movement

Peter Drucker

THE MARCH ON WASHINGTON for Gay and Lesbian rights — October 11, 1987 — marked a turning point in the lesbian/gay movement’s level of activity and militancy. It was not only the largest lesbian/gay demonstration ever, but also the largest demonstration around broad radical demands since the mobilizations against the Vietnam War.

The march also helped launch a new wave of lesbian/gay activism, which has developed, inevitably, around AIDS. In city after city, since the march, people have continued to work together and have consistently chosen AIDS as the issue to work on-an issue that can only become more urgent as the epidemic grows.

Until now the socialist left has been marginal in the movement against AIDS since the progressive movement against AIDS, at least, has sprung up from within the lesbian/gay movement, and the left has not been particularly active in the lesbian/gay movement Issues of sexuality have not been an important part of socialists’ traditional agenda. But I will argue that now there is a tremendous opportunity for the left to play a major role in the movement against AIDS.

There are two reasons for this. First, in the next few years the population of people with AIDS — and therefore the nature of AIDS as a public health issue — is going to be transformed. Until now most people in the United States with AIDS have been gay men, so that the unavoidable issue around AIDS has been sex and its relationship to health.

That will continue to be a crucial issue; if we want to talk about AIDS we’ll still have to talk about sex. Sexual freedom will still have to have a central place in our politics around AIDS. The right’s push for abstinence or monogamy (and isolating sinners through testing, tattooing and/or quarantine) as the answers to AIDS is both medically nonsensical and a threat to a lot of what the lesbian/gay movement and feminist movement have fought for all these years.

But in the next few years the sexual dimension of AIDS will to some extent be pushed aside by three other issues: first, class and corporate profits; second, feminism and women’s control of their sex lives; third, race and racism. All of these are issues are of deep concern to the left, and a socialist analysis of them is going to become increasingly necessary.

The second reason for socialists to enter this struggle now is that there are many people coming into this movement who have strong radical impulses but no political background. And they seem to be open to a left analysis.

Death and Profits

We are just beginning to learn the results of exposure to HIV — the Human Immunodeficiency Virus — the virus that almost certainly plays a crucial causal role in AIDS. A few years ago there were a wide range of estimates about how many people who tested positive for HIV would eventually develop AIDS. Some estimates were as low as10 percent, which we now know is far too low. The estimate most often cited now is 60 percent. Since an estimated two million or more people in the United States are HIV positive, at least a million people will contract AIDS.

Such early predictions as that of Margaret Heckler, Ronald Reagan’s Secretary of Health and Human Services that a vaccine would be developed in two or three years have proven far too optimistic. There isn’t much talk about a vaccine or a cure in movement circles any more. But there is more and more talk about treatment. The truth is that people with AIDS are beginning to live longer. After an unconscionable delay, the Federal Drug Administration has just begun authorizing more drugs for people with AIDS, and some of them seem to do some good. AZT, for example, in some ways a rotten drug with bad side effects, nonetheless seems to keep people with AIDS alive (on the average) longer. Even more dramatic is the treatment for PCP, pneumocystis carinii pneumonia, which used to be the quickest killer of any of the “opportunistic infections” that define full-blown AIDS. A couple of years ago it would only take two weeks after entering the hospital for a person with PCP to die. Now people with PCP go into the hospital, get treated with a new drug called pentamidine, and are out in two or three weeks. Many of them stay out for months.

These two trends — the high proportion of HN-positive people developing AIDS and the increasing average life span of those who do develop AIDS — combine to make for a bigger trend: the number of living people with AIDS is growing fast. However fast the virus is spreading, the number of people who are alive and have the disease is growing faster.

In New York, for example, 15 percent of people with AIDS have had it for five years or more. And unlike a few years ago, when medicine couldn’t do much for people with AIDS, money is more and more crucial to deciding whether these people will live or die.

The cost of the new AIDS drugs is outrageous. Under pressure, Burroughs-Wellcome, the company that makes AZT, recently lowered the price by a fraction. Before, the yearly cost of AZT for one person with AIDS was $18,000. It’s not much less now.

Pentamidine is much cheaper, but from 1984 to 1987 the manufacturer, Lyphomed Corporation, raised its retail price from $24.05 to $99.45 — while the raw materials cost decreased from $6 per dose to $1.80.

As a result, the drug companies are one of the major targets of the new wave of activism around AIDS.(1) And the Federal Drug Administration is another one. Huge profits to the drug companies are made possible by the monopolies generally granted to them by the FDA. The FDA has also caused bureaucratic delays in getting new drugs approved, with the result that people with AIDS spend an incredible amount of time trying to obtain illegally smuggled and manufactured drugs.(2)

Another target is the insurance industry — one of the most powerful sectors of capital-which is lobbying furiously, and in most states successfully, to avoid insuring people likely to be exposed to AIDS.(3) A new congressional study shows that 86 percent of commercial insurance companies exclude applicants from coverage on the basis of known or suspected HIV status.

When insurance companies have been forbidden by law to test for HIV, they sometimes just redline neighborhoods where gay men or intravenous drug users are likely to live. Hospitals play similar games — some have shipped people with AIDS to other hospitals across the country without the shadow of an excuse.

In short, the health industry is killing people to protect its profits. This is not a point that people in the movement need to have driven home to them. Calls for free drugs, free health insurance, a national health service don’t sound particularly radical in this movement. Being anti-capitalist comes naturally for these people.

Paying for health care is a class issue. Obviously with costs so enormous, a crucial determinant of whether people with AIDS will live or die is whether they have major medical coverage. A unionized autoworker still has it But given the reshaping of the U.S. working class, it consists less and less of unionized autoworkers, more and more of low-wage and/or part-time and/or unorganized people with few or no benefits.

At the same time the “safety net” for the uninsured, which was never too reassuring, has had so many holes cut in it that it’s more holes than net. Try to get federal disability benefits these days if you have ARC (AIDS Related Complex) with its swollen lymph nodes, night sweats, constant high fever, debilitating fatigue; it isn’t easy. People have waited a year or more for their benefits to be approved. Five hundred people have died from ARC-the supposedly non-fatal version of AIDS-and some of them were still waiting for their benefits when they died. As just as working-class people’s need for money for healthcare is growing enormously, the money is shrinking away.

The slogan, “Money for AIDS, not for war,” already sounds a little hackneyed. But the inescapability of the demand is now becoming obvious. AIDS funding has to be in the tens of billions now. (The presidential AIDS commission has called for doubling the current federal funding level, to $2 billion.) Where can that kind of money come from if not the military budget?

The movement, however, is not limiting itself to demanding that more money be funneled through the existing health establishment People with AIDS have been creative in seeking out alternatives. Their assertiveness makes clear why people with AIDS don’t want to be called “AIDS victims” or “AIDS patients”; probably no group of people in history has done more to acquire knowledge and independent authority about a disease. Thanks to their drive, the movement has been fairly strong in pushing for home-based care, community-controlled care and alternative therapies.

Safe Sex for Straights

The second way AIDS is being transformed started with the really fashionable question: Can straight sex transmit HIV? Or, as more commonly phrased: Is AIDS spreading to the “general population”? Or, even more appealingly phrased, are lots of “innocent people” going to be dying?

The implication of these questions for those of us who have had friends dying for five or six years now is that our dead friends were just the abnormal and the guilty. But that’s just by the way.

The answer to the question is: Yes, straight sex can transmit HIV. The clearest proof is in Africa, where straight sex is the main means of transmission. For just this reason there is now an enormous campaign how Africans are different from North Americans, so that straight U.S. citizens don’t have to worry.

The most offensive item in this campaign so far was an article in Cosmopolitan magazine. The article explained that Africans transmit HIV through straight sex only because: 1) so many Africans have gonorrhea sores; and 2) sex among Africans is so brutal — more like rape than anything civilized people think of as sex.

Leaving aside this kind of groundless, dangerous, racist myth-making, one can still speculate about how fast and how far AIDS is likely to be spread through straight sex. Any answers to this question are probably still guesses. The federal government estimates that 2 percent of the people with AIDS in the United States today — something over a thousand people — got it through straight sex, while by 1993, out of the 450,000 people that the government estimates will have AIDS by then, 5 percent — tens of thousands — will have been exposed through straight sex.

Given forecasts like these, a key question in predicting the spread of AIDS is whether straight people will start having safe sex. On the one hand, the chance of any particular couple who meet in a singles bar passing the virus from one to the other seems statistically low. On the other hand, a statistically low chance of being exposed to AIDS and dying can still leave you completely dead.

Ninety-five percent of safe sex can be summed up in two words: “Use condoms.” You can do pretty much anything with pretty much anyone, and if you use a condom your chances of being infected with AIDS are still virtually nil.

Now for straight people to start using condoms, the cooperation of straight men is hard to do without. But the evidence suggests that women are much more likely to be exposed to HIV through sex with men than men are through sex with women. Therefore either straight men are going to have to behave responsibly and considerately by doing their share to make sex safe, or straight women are going to have to assert themselves to see that they do.

Radical America put out a good special issue on AIDS, which touches on the dynamics of this situation. For example, consider the situation of an unmarried Latina woman from a traditional Catholic family who’s having sex with a man. If anywhere in the back of her mind there lurks a suspicion that she’s doing something she shouldn’t, the most plausible excuses at hand are that she’s been carried away by passion, and/or it all happened so fast, and/or the man started things, and/or the man is the one who knows what’s going on. Any of these excuses will be badly undermined if she interrupts to demand that the man wear a condom.

I suspect that Latina Catholics are not the only women who come up against this problem. If one rejects the right’s solution of lifelong monogamy or celibacy as neither plausible nor desirable, then stopping the spread of AIDS is closely bound up with helping women feel comfortable with their sexuality and able to assert themselves sexually. This is a feminist issue.

It’s also a life and death issue. Although women currently make up only 8 percent of people with AIDS, the proportion is growing: AIDS is already the leading cause of death for women of childbearing age in New York, and women have the worst survival rates.

Straight people have an advantage here that gay men didn’t have. Straight people have proof that safe sex can stop HIV transmission-because gay men have proved it. The rate of new exposure to HIV through gay sex is now virtually zero. In other words, although previously infected gay men will continue to develop full-blown AIDS for some years to come, gay men who have not yet been infected are probably safe.

The consequences of this are amazing. Although thousands of gay men are going to develop AIDS in the next few years (as long as there’s no vaccine), sometime in the early 1990s fewer and fewer will. Instead, AIDS will increasingly become a disease of other classes of “guilty victims,” those among whom transmission is still occurring: intravenous drug users, mostly poor and disproportionately Black and Latino.

Needles and Racism

The fact that transmission is still occurring among IV drug users reflects a hideous reality about government policy: the government prefers that these people die. Just as safe sex is the simple way to stop sexual transmission, there is a simple way to stop transmission through needles-free one-use-only needles.

These needles are being distributed now in several countries — the Netherlands, Britain, Australia — through needle exchange programs that let users exchange used needles for new ones. The program was most successful in Amsterdam where the users themselves, organized into a junky union, gave out the needles. (When the government took over distribution the number exchanged dropped about 20 percent.)

But in the United States hardly any users are getting clean needles. There are small pilot projects in New York and Portland and an unofficial but tolerated exchange in Tacoma, Washington. When the Boston City Council voted for another pilot project, Massachusetts Gov. Michael Dukakis helped kill it. In other cities people have just gone out and set up exchanges-and been arrested, fined or even jailed. Many activists are settling for programs that teach users to clean needles with bleach, a second-best solution.

The reason is not just government austerity and tight-fistedness. It is also the endlessly reiterated argument that to give out needles is to encourage drug use. This argument is nonsense. There has never been a single example cited of a person shooting up just because a needle was available. On the contrary, caring whether they live or die from AIDS can be, and has been for some users, the first step toward taking control of their own lives and getting off drugs.

But the idea of getting people off drugs by empowering them is contrary to the whole current ideology around drugs. The ideology is to keep people off by watching them like hawks and to punish them harshly once they’re on. Better they should be killed than forgiven-that really is the message. The message is reinforced when drug treatment programs are cut — as they are being cut now.

This message is also deeply racist. The bottom-line assumption is that people who are not white have worthless lives. And already 41 percent of people with AIDS are not white. To suggest the extent of the devastation that is possible in nonwhite communities: the seropositive rate in the South Bronx is estimated at 85 percent to 88 percent.

That number will rise, and as it rises, so will much of the white public’s tendency to write these lives off. The legislative assistant to my local congressperson just announced that most members of Congress are focusing on stopping further spread of AIDS — they are resigned to having “the bulk” of the 2 million seropositive people die.

Meanwhile the institutions that have arisen to deal with AIDS are mostly staffed and controlled by white professionals. They will be rightly perceived by many people with AIDS as alien. If people with AIDS or at risk for AIDS don’t trust these institutions, however well-funded they are, they are unlikely to succeed.

I want to add that I don’t believe, as some on the left do, that legalizing drugs would eliminate all these problems. The role of IV drug use in accelerating the destruction of minority communities is terrible, and I think those within them who talk about genocide are not so far wrong.

While I think punishing the users themselves is stupid, I have no objections to attacking and punishing the burgeoning “narcobourgeoisie” that is growing fat off this misery. But when people on the left oppose free needles on the grounds that drugs are genocide, they are actually complicit in a form of genocide – AIDS — that is working a lot faster.

The same kinds of prejudice that lead to counterproductive policies around AIDS and IV drug use show up in the treatment of immigrants, prostitutes and prisoners. These are the groups most likely to be subjected to mandatory testing and quarantine.

Federal prisoners have been subjected to testing for months now, without any congressional authorization. In California random testing of state prisoners began on April 1, also by simple executive order: The notion that this policy has anything to do with prisoners’ health or well-being is belied by the treatment of prisoners actually diagnosed with AIDS. Despite the state’s practice of routinely granting” compassionate release” to prisoners with fatal diseases such as cancer, not a single prisoner with AIDS has been let out.

In the state prison at Vacaville prisoners with AIDS are segregated and denied all privileges. Medical care is abysmal. In one typical incident, IV drug-using prisoners heard that sterilizing their needles with bleach would prevent AIDS transmission and began taking bleach to clean their works: the prison just stopped using chlorine bleach. As a result prisoners have apparently been trying to clean their needles with cleansers like Comet, which is dangerous.

The Transformation of the AIDS Movement

In retrospect, AIDS organizing seems to have been simpler in some ways a few years ago. The government was doing almost nothing; the public was virtually indifferent. So a few gay radicals, clear about class politics, race politics and sexual politics, were the movement.

Now the mainstream has discovered AIDS in a big way. As a result we have to spend enormous amounts of energy figuring out not only how to stop counterproductive or even fascistic “answers” to AIDS, like the LaRouche initiative, but also how to avoid co-optation by the mushrooming AIDS establishment.

The San Francisco AIDS Foundation, for instance, has eighty people on its payroll. They are obviously working under constraints. They can’t do anything overtly political. They can’t bite any of the hands — federal, state, local, corporate — that feed them. Given their numbers, they are creating an important bias toward “moderation” and “responsibility,” which translates as working with the authorities rather than mobilizing against them. This approach will get us something, but not enough.

There is a consensus being formed and re-formed by establishment AIDS institutions like these. While it does clearly oppose quarantine or mandatory testing, and advocates more funding-after all, more funding means more jobs for experts-it also reinforces some basic, conservative prejudices, simply because it cannot afford to challenge the dominant conservative ethos.

Fortunately lesbian/gay radicals have not only continued to fight AIDS independently of the government but have won many new people to their ranks. A new wave of AIDS organizing came out of the 1987 March on Washington, most of which was expressed through a national network called ACT NOW (AIDS Coalition to Network, Organize and Win).

ACT NOW has grown to include over fifty local groups in over thirty cities in the United States and Canada. Many of these groups are called ACT UP (AIDS Coalition to Unleash Power) after the original model group in New York; some that originally had other names, as in San Francisco and Chicago, have renamed themselves ACT UP.

Many (though not all) were catalyzed early on by lesbian/gay left groups such as the Lavender Hill Mob in New York, Lavender Left in Los Angeles, Dykes and Gay Men Against the Right (DAGMAR) in Chicago and Lesbians and Gays Against Intervention (LAGAI) in San Francisco. But the groups have expanded well beyond the earlier gay left, to the point where L.A. ACT UP has had as many as150 people at a general meeting and New York ACT UP often has 300.

Few of these people are mainstream liberals. Many are more or less anarchist, largely because anarchism seems to capture their spirit of anger and independence. Many supported Jesse Jackson (including some of the anarchists, paradoxical as that is). People from various Marxist groups can and do operate in this milieu and take on leadership roles, although the majority is wary of Marxist politics.

Anyone going into this movement has to be prepared for the reality, for example, that many people in it are well informed about Cuba, which at the moment has just about the worst AIDS policy in the world: the Cuban government quarantines not just people with AIDS, but everyone who turns up HIV positive. Any kind of apologetics, however faint, for this kind of bureaucratic repression will go over like a lead balloon.

People in this movement also have an exceptionally low tolerance for left rhetoric. By arguing for “united fronts,” for example, leftists can alienate even those who agree that we should be reaching out to those less radical than we are.

Another reason for the weakness of Marxist influence in this movement is people’s lack of inclination toward the kind of strategic thinking that Marxism requires. Direct-action AIDS activists think mostly about how to express their righteous anger as often and dramatically as possible. They think less about how to reach millions of working people.

Because of this failing they limit themselves to a fraction of their potential following. It is striking, for ex­ ample, that whereas ACT UP/SF spends enormous amounts of time thinking about how to project an antiracist politics and reach people of color, it is still almost all white. The AIDS Foundation by contrast, though it has weaker antiracist politics, has the money to hire people of color and the resources to put out lots of literature by and for them.

ACT NOW’s first year, October 1987 to October 1988, was a time of fast growth, increasing public attention and national coordination. In May1988, ACT NOW called for a national week of coordinated action around an excellent set of themes: AIDS and homophobia; Care of PWAs (People with AIDS); AIDS and people of color; AIDS and IV drug use; AIDS in the schools; AIDS in the prisons; Women and AIDS; and AIDS treatment re­ search.

A few of these actions made a big splash, as when people from New York ACT UP occupied the Statue of Liberty. All of them were enlivened by the militancy, creativity and theatricality that ACT UP groups often demonstrate, though some were disappointingly small.

ACT NOW moved on from this first modest success to its biggest triumph yet: national actions in Washington, D.C., in October 1988, commemorating the first anniversary of the 1987 march. Activists from around the country gathered at the Health and Human Services Department for a rally. They held a public tribunal that found Ronald Reagan and his administration guilty of the deaths of thousands of people.

The next day ACT NOW shut down the Food and Drug Administration in a protest against the bureaucratic delays and corporate profiteering that have kept drugs from people with AIDS who need them. The action made headlines and got mostly favorable coverage. But the weekend in Washington, although a success for activism, was an organizational setback. Despite the evidence that national coordination was bringing the movement far more than local groups could achieve on their own, the ACT NOW conference that weekend was divided between people who wanted to move toward a national organization and those who were suspicious of any coordination at all.

While the network has formal agreement on radical stands like advocacy of free national health care, the pressure gets stronger to push these stands out of the spotlight in order to focus on narrower, more winnable demands-above all access to specific drugs — as practical possibilities for saving lives become more obvious.

Leftists want to strengthen the movement through alliances with others, particularly women, people of color and unionists fighting around health issues. But less political gay people see little evidence that other movements are doing anything for them and are wary of diluting their own movement’s focus.

These underlying tensions were not dearly expressed, still less productively discussed in Washington. Instead, they contributed to a raucous conference that made no decisions and left bitter feelings. Since then, though local ACT UP groups seem to be still going strong, ACT NOW has been floundering.

The potential still exists to build a large, mass-action-oriented anti-AIDS movement, however hard it may be to realize that potential. The presence of revolutionary socialists who have educated themselves about the movement and can educate the movement about tactics could be crucial.

By mobilizing lesbians and gays more effectively, broadening the movement to include all those threatened by AJDS, building alliances with others victimized by the medical industry and bureaucracy and beating back mindless authoritarianism and panic around sex and drugs we could really-at last-stop the dying.

Notes

1. When Chicago activists protested at Lyphomed’s headquarters, they received a call from Lyphomed assuring them that there was really no need to protest and that if any of the activists’ friends needed pentamidine there would be no problem about their getting it.
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2. In recent congressional hearings the head of the FDA admitted that he had requested 137 staff people to monitor drug trials and only gotten eleven. But he had lied to Congress by saying that he had as much staff and money as he needed. Because there was not a single staff person available to monitor aerosolized pentamidine trials, its licensing was delayed for thirteen months during which people were dying unnecessarily from pneumocystis. Other drugs are being delayed for years. The head of FDA admitted in his testimony that if he had AIDS he would be out there trying to get hold of illegal drugs himself.
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3. California is so far an exception, but not Massachusetts, where Gov. Michael Dukakis overruled his own commissioner in order to help out the industry.
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March-April 1989, ATC 19