feature
What AIDS looks like now
AIDS has a new manifesto, a new infection rate, a new face and a new world rife with public health challenges – here’s how we still let infection into our relationships, and why prevention is still the best defense
Published Thursday, 12-Aug-2004 in issue 868
French writer and philosopher Albert Camus published his classic novel The Plague in 1948. He recounts in it a fictional record of an outbreak of the bubonic plague in the Algerian city of Oran. Considering that the plague has played a devastating role time and again in human history, it was logical that Camus would have chosen the plague as an example of a disease most capable of undermining the foundations of society. Outbreaks of the plague in literature, in fact, stand at the very start of Western civilization: The Iliad, the first epic in Western Literature, begins with an outbreak of the plague in the Greek camp.
Reading The Iliad today means encountering a difference in attitudes shown by the ancient and modern mind towards disease. The modern approach is to view any disease as a technological problem. We investigate the shortcomings in the technology of hygiene that gave rise to the disease; we pump money in medical technology to develop a treatment and a serum to eradicate it. Disease, to the ancient mind, was an indication of a world out of balance. An epidemic disease, such as the plague, was the public expression of the sum of a society’s failings.
Bubonic plague has not been considered a major threat to public health in the West since the start of the 19th century. Our complacency is ill founded. Plague has not been eradicated, and cases have been found in India that are resistant to all known forms of treatment. Plague, in other words, is still a player: we may again see the day when the plague sweeps out of Asia to wipe out a major percentage of the population.
Modern society is faced, in the meantime, with AIDS. We should keep in mind that the plague in the Middle Ages had an approximate mortality rate of 33 percent. That was sufficient to destabilize the social order. AIDS, left untreated, has a near 100 percent mortality rate. Worldwide, 20 million people have died of AIDS. A further 37.8 million people are living with HIV. It is impossible to say how many people the plague actually killed, but it is safe to say that AIDS has already surpassed that number, and the death toll is still rising.
The plague in Camus’ book begins among the rats. First, a few die, then more and more, until there are nearly a thousand dead rats per day lying on the streets. It is the pier people of Oran who first notice that something is amiss. They are the first to see the rats dying in large numbers. They are the first to fall ill themselves. The plague climbs the socioeconomic ladder, striking first the lower classes, then the middle, until no one is safe. This progression is characteristic of the plague and is historically accurate for every occurrence. And AIDS, when first diagnosed in 1981, seemed to be following a plague paradigm. There were early vague rumors of a condition that seemed to be killing gay men. This labeling of AIDS as a “gay” disease was to determine society’s future reaction to it. AIDS was associated with homosexuality and promiscuity. Instead of being identified as a viral infection that could affect anyone, it was a shameful disease that could not be mentioned. An admission of AIDS was tantamount to an admission of homosexuality, which at the time was considered to be the social kiss of death. The movie star Rock Hudson and the entertainer Liberace did everything they could not to reveal the name of the disease that was killing them. The administration of then-President Ronald Regan was notoriously inactive in combating this new disease, allowing AIDS to gain a foothold across the nation. To this day, AIDS is viewed as a problem of the gay community. Prevention programs are designed with gay men in mind. Measures to combat AIDS are aimed at the gay community, such as the proposals to close the bathhouses in Los Angeles. All this ignores the fact that gay men are no longer the group most at risk for contracting AIDS.
The new face of AIDS
AIDS, it is true, remains a minority disease, but the minorities have changed. The minorities most affected now are blacks and Hispanics; African Americans overall make up 12 percent of the population, but with the rate of diagnosis running at approximately 21,000 new cases annually, African Americans alone account for slightly more than half of the 40,000 new diagnoses of HIV infection made every year. They also account for about half of the newly reported AIDS cases. There are approximately 185,000 African Americans living with AIDS in the United States. According to the Center for Disease Control, the proportion of AIDS cases among adult and adolescent women in the United States has more than tripled since 1985. Black and Hispanic women account for the largest increase. Although the two groups taken together represent less than one-fourth of all women in the United States, they account for 80 percent of all AIDS cases reported among women in the year 2000. Among this group, an estimated 70 percent contracted AIDS through heterosexual contacts, with devastating results. AIDS is the leading cause of death for black women aged 25 to 34 years old.
One explanation that has been advanced to account for this breakthrough of AIDS into a new population concerns the sexual behavior of black men. African-American men have apparently been considered immune to any suspicion of bisexuality or same-sex activity by members of the black community. It was assumed that only white men were gay. Their complacency was shaken by a recent report from the North Carolina Department of Health and Human Services and the University of North Carolina at Chapel Hill. Researchers found 84 new cases of HIV infection among students in the period from January 2000 to December 2003. Seventy-three of the new infections were among black men aged 18 to 30. The study included white, Asian and Hispanic males, but no females. No other group investigated showed such a sharp increase as the black males. Twenty-seven of the black males said that they had sex with both men and women, which led the study to conclude that large numbers of college-age women were “at significant and unrecognized risk.”
A recent collection of interviews with African-American men who have sex with men, On the Down Low: A Journey into the Lives of “Straight” Black Men who Sleep with Men (Broadway Books, February 2004) by J. L. King, and a subsequent high-profile discussion on “Oprah” earlier this year, revealed that many black men having sex with men fail to identify as gay. This will not surprise anyone who went through the gay-straight debate during the early days of gay liberation in the ’70s. The only surprise is that apparently so many black men are so far behind the times in their sexual definitions. According to King, it is still widespread among black men to have sex with other men while denying that they are anything but completely “straight”. Because these encounters – no matter how frequent – are completely casual and “uncharacteristic”, the men involved refuse to take any precautions and refuse to believe their actions may have any consequences. King himself admits to leading this kind of life, all the while insisting, throughout the televised “Oprah” discussion, on referring to himself as straight. He said that any self-definition as a gay man would lead to his being abandoned by his family and friends, and that he would have to leave his church as well as his neighborhood. He claimed that if he were forced to make an exclusive choice, he would choose to spend his life with a woman, because women have more to give and he enjoys them, and that having slept with other men does not make him gay. He identified being gay as “a white thing,” stating without explanation that it was different for black men.
The Center for Disease Control names “denial” as one of the reasons why prevention programs are ineffective among African Americans. Since African-American men having sex with men often do not identify as gay, they tune out any prevention messages aimed at gay men, the CDC claims.
The justifications King offers for his conduct may be widespread and acceptable among black men, but they sound like the classic excuses that closeted white men give for remaining closeted: fear of the social sanctions that may be applied if they come out. King argues that the black community is much more intolerant of homosexuality than white society and that may or may not be true; but any tolerance that society in general may now show towards gay men has been hard won. It was fought for by gay men who refused to be excluded or devalued because of their sexual orientation. In the meantime, studies like the recent one at Chapel Hill are revealing black women to be an overlooked, high-risk group for receiving HIV infection.
“Worldwide, 20 million people have died of AIDS. A further 37.8 million people are living with HIV.”
The manifesto
Discussions like these are a sobering experience, but therapist Sylvia Morales indicates that black men are not the only MSMs (men who have sex with men) who struggle with their sexual identity.
“I speak with a number of men who are troubled at being gay,” says Morales. (For the rest of the interview, see the accompanying sidebar.) “They’re afraid of being rejected by their families or of being left alone. They’re willing to put up with a lot just to know there’s someone there who will give them attention.”
A therapist like Morales probably hears the unvarnished truth in a one-on-one session more often than even an investigative reporter or a 12-step counselor. The things Morales has to say can engender a sense of rage at the manipulative and dishonest side of human nature in a relationship.
Perhaps it is this same sense of rage that has lead to a document that is causing some discussion in the gay community: “The Seattle Manifesto”. The manifesto arose in response to conditions in King County, Wash., where it was found that the number of HIV infections diagnosed among Seattle-area MSMs who attended public health clinics had increased 40 percent from 2001 to 2002. Should the trend continue, public health officials predict that the number of new infections could increase by another 60 percent in 2003. The majority of HIV/AIDS cases 85 percent – are among men who have sex with men. The manifesto begins with the demand that “Gay, Bisexual and other men who have sex with men must act against the behaviors and attitudes responsible for the increased spread of these diseases.” It reminds us that, “Every Gay, Bisexual or other man who has sex with men is responsible for the health and well-being of the community.” The manifesto goes on to say that: knowingly transmitting HIV is avoidable – its transmission is unacceptable; disclosing HIV/STD status does not negate the necessity to practice safe sex; bare-backing is unacceptable high-risk behavior except in committed monogamous relationships between partners of the same HIV status; and transmitting HIV knowingly is an act of violence. The manifesto closes with a demand to “stop transmitting STDs and HIV now!”
The manifesto is appearing in various local newspapers and on websites with an invitation to sign it. On Dec. 1, World AIDS Day, the list of the signers’ names will be publicized. One of the authors of the manifesto, Bill Krutch, is quoted in an editorial in POZ Magazine as arguing that an important reason for the spread of HIV is self-hatred in the gay community. The assumption is that HIV-negative men do not love themselves enough to stay uninfected and that those with HIV infections care so little about other gay men that they are willing to infect others. According to Krutch, “We know we are a very moral people, and if anything, AIDS has taught us the value of human life. But why, in this one area of sex, can’t we live up to our values? It feels strange to gay people to use right and wrong in a discussion about sex and prevention. But what is even stranger is that we have made it OK to infect each other. I believe we want to do better.”
Not everyone approves of the manifesto or its language. It has been called divisive. It has been denounced for using finger-pointing tactics. Some have seen in it a call to violence against HIV-positive people. The signature campaign has also come in for criticism. It is seen as trying to enforce unity on a complicated issue. Those who cannot endorse enough of the manifesto to sigh in good conscience might be laying themselves open to charges of supporting unsafe sex.
A strong supporter of the manifesto in the San Diego area is Chris Thomas, prevention and outreach coordinator at Stepping Stone and an activist who works in the local fight against AIDS. Thomas evaluates the AIDS scene in San Diego as follows:
“I do not see an increase in HIV infection. However, with the new Rapid Testing, the rates on HIV diagnosis have increased. I think there has been some prevention fatigue in the community at large, particularly in the MSM community. I think it takes a really intelligent person to realize the dangers of HIV along with the necessity of practicing safer sex. Too many youth still feel invincible and don’t practice safer sex. Also, too many HIV-ers still practice unsafe sex without disclosing their HIV status. The media and general public have glamorized HIV/AIDS and CMCDL [Chronic Medicinal Condition Like Diabetes] … which in my mind is an unhealthy message to put out there. I don’t think any HIV program is sufficiently funded. I worry about HIV prevention in the future not being funded properly. I am an advocate for prevention with positives and I see this as a behavioral issue that can be curtailed if people behaved properly.”
Terry Cunningham, the chief of San Diego County’s Office of AIDS Coordination (OAC), echoes from his post as a county official what Thomas sees on the front lines of activism. The county OAC disperses state and federal government funds for both care and treatment of people with HIV/AIDS in the county, then negotiates and monitors the county agencies providing the services.
“HIV Prevention is based on behavior change,” Cunningham said in a recent email to the Gay & Lesbian Times. “This has proven to be the most effective methodology for preventing both the transmission of HIV and infection of HIV.”
“It feels strange to gay people to use right and wrong in a discussion about sex and prevention. But what is even stranger is that we have made it OK to infect each other.”
Like Thomas, Cunningham refers to something called “prevention fatigue” – a general apathy that continues to put young gay males at risk: “Nationally there has been documented [cases] that there is prevention fatigue and recidivism. Locally, statistics are showing that young gay males are among the highest risk population. Therefore, while we are not seeing the [rising] rates in older gay males … there appears to be the same prevention fatigue as there is nationally. The younger gay males have not seen the devastation this disease has caused and therefore do not have the same history with the disease as do older men.”
National prevention funding and efforts, Cunningham confirms, are tailored toward specific groups. “HIV prevention is for all communities, but because of state mandates and lack of funding OAC has had to tailor grant requests to those populations most affected by the disease,” he says. “The gay community and communities of color have always been top priorities for funding. Women of color and injection drug users are also priority populations. The state has mandated that 25 percent of HIV prevention funds are to be targeted for prevention for positives. This is a shift in direction from keeping those who are uninfected from becoming infected to educating those who are infected from infecting others. Both types of HIV prevention efforts are vital to stopping the spread of the disease.”
Cunningham said the OAC receives approximately $2.7 million for HIV prevention, and by state regulations this must be distributed according to the demographics of the disease. Along with the institution of a new testing procedure known as Rapid Testing, there has been an increase in reported HIV infections. “Because this methodology of testing is relatively new,” Cunningham says, “we are not able to discern whether or not this is because of the testing or if it is a true trend.”
“‘The Seattle Manifesto’ has several good points,” Cunningham said. “HIV prevention must include a variety of messages to be effective. However, all individuals who are sexual need to understand HIV transmission – if they are negative, they need to stay negative, if they are positive they need to make sure that they are not transmitting this disease to others. As in a myriad of life decisions, individual responsibility for actions is of the utmost importance. Since the transmission of this disease has been defined, there is always hope that its transmission can be halted. There has to be optimism that this will occur with proper education and understanding.”
Prevention – the best defense
The 15th annual World AIDS Conference recently ended in Bangkok, Thailand. Its estimation of the state of the fight against AIDS was mixed. Experts were in agreement that there is no immediate prospect for a cure or a serum for AIDS. That means that, for the immediate future, all we have are treatment and prevention. The good news on the treatment front is that the price of the anti-retrovirals is coming down. Treatment is coming within the reach of the poorer countries, although it is still prohibitively expensive. Poorer countries will still be dependent on the richer countries, particularly the United States, to fund treatment programs.
The drawbacks of treatment are widely known: Aside from the expense, the treatment regimen is toxic over long periods and the virus is able to develop resistance over time to the drugs used to treat it. There is always the danger that at some time, a strain of HIV will appear that is resistant to every drug we have. Then we will be in the same position we were early in the ’80s, which is to say completely helpless.
The most effective weapon we have against AIDS is prevention. HIV is not like tuberculosis or the plague, which can spread through the air and infect large numbers of people at a time. HIV is not so easily spread, so if every person takes responsibility for prevention, it should be possible to cure infection rates dramatically.
The problem with this strategy is obvious: It assumes that each individual will behave responsibly and rationally at all times. Sometimes, as in Bill’s case (see the sidebar accompanying this story), we are weak and let our emotions dictate our behavior. Many times, as in the examples given by Morales, we are dishonest about ourselves to others. We use sex as an instrument of power or revenge. Sex has always been a treacherous area. It is not comforting to think our success in prevention depends on rationality about sex.
The size of the problem also makes prevention difficult. Not everyone feels equally threatened by AIDS. AIDS first appeared in the United States as a disease of gay white men; the general population assumes that this is still true. We have seen that it is not exclusively true, but to say that AIDS is now primarily a disease of black and Hispanic females is equally false. They are merely the group being most affected by AIDS at the moment, but that can change with the next collection of statistics.
Since AIDS is perceived to be a disease of specific groups, prevention campaigns are designed to target those groups. Unfortunately, a campaign aimed at gay white men will be dismissed by black men, some of whom, even though they may have sex with men, don’t think of themselves as gay. Undoubtedly, new prevention campaigns will be designed targeting black men and black and Hispanic women, but until people realize that AIDS is a disease that can affect anybody, and that the need for prevention is a concern for all of us, there will always be the danger that any prevention campaigns will always be one step behind the rate of new infection in any given group.
“This labeling of AIDS as a ‘gay’ disease was to determine society’s future reaction to it. AIDS was associated with homosexuality and promiscuity. Instead of being identified as a viral infection that could affect anyone, it was a shameful disease that could not be mentioned.”
When we think of the fight against AIDS, we should remember that none of the classic scourges of mankind have been eradicated (with the possible exception of smallpox but, as we have recently seen in the last Iraqi war, even a disease that has been eradicated in nature can be resurrected in the laboratory). Tuberculosis, syphilis, cholera, malaria and even the plague still exist. There are strains of tuberculosis, syphilis and the plague that are resistant to all forms of treatment. Any one of these diseases could reappear in epidemic form. We should add to this list the other “new” epidemic diseases such as SARS, which may return with the cold weather. All of these diseases are held in check by hygiene and constant prevention measures.
It may be that AIDS will have to be added to this list. So far, there has been no indication that it can be eradicated, and, considering the rate at which it is spreading, it seems likely that there will always be a reservoir of infection in the poorer countries, as is the case now with the aforementioned classic epidemic diseases.
If, as is possible, AIDS is an ineradicable disease, then we will have to abandon the current presumption that HIV prevention is the special concern of any particular group such as gay men, black men, women or anyone else. We should remember at this point that it has always seemed logical to the general populace to hold a minority – particularly an already unpopular minority – responsible for the natural spread of a disease, which would have happened in any case.
More might be achieved by conducting the debate on HIV prevention according to a more “ancient” model: HIV is in the national and the world bloodstreams, just waiting to happen. An increase in the incidence of HIV infections in any one group will likely be the expression of social shortcomings in the treatment of that group. If HIV had not chanced to have first broken out in the “unmentionable” group of homosexuals, we would not be facing such an epidemic today. It is perhaps no accident that HIV continues for the time being to find expression as a minority disease. It is much easier to tell each group, as it is infected, to use condoms (as they certainly should) than to conduct a national debate over equal access to health care – to name one example – but, in the long run, a debate on our national failings in healthcare will save more lives, not only those threatened with AIDS.
The plague that Camus wrote about was not just a disease caused by a bacillus; it was also a metaphor for the state of society and the condition of mankind. To make his point, Camus concentrated on one group of people. Two characters in the group are Tarrou and Rambert. They have in common that they are both strangers to Oran. They are there only by chance when the plague breaks out, but their reactions are completely different. Tarrou immediately volunteers to help in any way he can. Rambert at first wants to escape at any price. When Oran is put under quarantine, he tries to escape illegally, even though he knows he risks spreading the plague to other areas. But it is not just a question of who is infected and who is not, Oran discovers: “… now that I’ve seen what I have seen, I know that I belong here whether I want to or not,” he says. As Oran becomes more and more involved in the effort to help plague victims, he begins to see that the struggle is not just for those who have the disease – rather, it is a struggle for everyone.
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