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In Fear of AIDS

As Dallas wakes up to the epidemic, the line between illness and political issue begins to blur.
By Tim Allis |

Myth: You can get AIDS merely by being around a person with AIDS.

Fact: The virus believed to cause AIDS is transmissible sexually, through blood transfusions or through injections.

Myth: AIDS began in the gay community.

Fact: The earliest known cases were among heterosexuals in Africa.

Myth: AIDS endangers only certain segments of the population.

Fact: So far AID&fiasstruck mostly high-risk groups, but one is necessarilyimmune.

THE MISINFORMATION that accompanies many of the discussions of AIDS-acquired immune deficiency syndrome -is plentiful and peculiarly stubborn, partly due to fear, and partly because the facts aren’t always as interesting as the myths. But something else is at work: The subject of AIDS is fraught with political, social and personal concerns. For many who are most vocal about the epidemic, the facts can get in the way.

Some information is harder to manipulate: The deadly and so far incurable disease has struck some 12,000 Americans most of them gay men, killing more than half. No victim has lived for more than four years. AIDS will probably claim tens of thousands more victims, many heterosexual.

Dallas, despite its large (but largely conservative) gay community, has not been on the national forefront of the fight against AIDS. The city is waking up to the reality of the crisis, but slowly. Prevention and relief efforts have been fragmented, the work of under-funded organizations and volunteers, mostly gay. City Hall remains unin-volved, but as “straights” perceive the risk to themselves, that may change. Meanwhile gays, long familiar with the threat of the disease, are facing another threat: a backlash of discrimination by straights, some of whom only now are able to recognize the gay community for what it is: 10 percent of the population.

Fear of backlash has been heightened by the recent federal court decision that put Texas’ so-called “sodomy statute” back on the books. Though that decision was rendered primarily on constitutional grounds, it would be naive to say that the lurking threat of AIDS did not influence the court.

This month, organizations as diverse as the Dallas County Health Department and the Dallas Gay Alliance, with the help of volunteers, are holding AIDS Awareness Week, October 14-19, in the hope of alerting the community to the danger of the epidemic and educating people about the misunderstood disease. That there is a danger to the community shouldn’t be questioned. The Health Department had tallied, as of August 26, only 225 cases of AIDS in Dallas County since 1981, the year after the first reported cases in the country, but it anticipates at least 50 more by the end of the year. Nationwide, the total number of AIDS cases has consistently doubled every 10 to 12 months; here the rate of increase is slightly faster. Even though the Dallas rate should level off temporarily within the next year or two-as is happening in New York and San Francisco-the County Health Department projects at least 4,500 victims by 1990.

BUT THOSE FIGURES don’t fully suggest the seriousness of the epidemic. Factor in the number of people who may carry the virus that can cause AIDS; estimates for the Dallas area run between 1,000 and 20,000. Then keep in mind that the incubation period for AIDS, although different with each case, can be at least as long as six years. And even those numbers may tell only part of the story. Patients with conditions similiar to AIDS who run a high risk of getting the disease aren’t counted among cases because their symptoms don’t fit the strict definition required by the federal Centers for Disease Control in Atlanta, which keep the national count and research the disease. The weekly tabloid New York Native, a gay publication that runs the most thorough and at times controversial layman’s coverage of the disease and its attendant politics, believes that the number of cases acknowledged by the CDC, such as those reported by the Dallas County Health Department, could be a mere tenth of the actual number. Even if the figures are right, the situation is potentially catastrophic, especially if Dallas medical facilities become a magnet for AIDS victims from all of North Texas.

Beyond the hospitals and hypothetical multiplication, AIDS has already thrust itself into the public psyche, raising questions about not only health but also civil rights. Among Dallas’ gay community, where the fear of AIDS hovers like a fog, low-grade hysteria about the disease is accompanied by a deepening depression. The flamboyant colors that paint the face of Cedar Springs have taken on a jaundiced tint, and seductive glances have been replaced by wary eyes. Friends watch friends die, lovers lose lovers and, for some, an equals sign is forming between sex and death. Gays are wearing a new stigma, old prejudices are being renewed and many gays who believed they had at last gained equal footing with straights can feel themselves starting to slip.

For straights, the news that the public at large is in danger, that the risk group categories-gays, intravenous drug users, hemophiliacs-no longer neatly confine the disease, has prompted confusion, fear and anger. Heterosexuals, who until very recently had felt safe, are beginning to take fewer sexual partners and practice safer sex. Those who aren’t frightened are waiting to find out if they should be.

Stories are starting to accumulate. A couple in a Dallas restaurant walks out because they fear their waiter is gay. A gay man loses his job because of his frightened co-workers. A woman tells her friend it’s not safe to go to the theater anymore. A young man with AIDS, barely alive, is refused admittance to a hospital.

Homophobic lobby groups like Dallas Doctors Against AIDS are using the mounting fear like a very big stick, poising themselves in the courts and in Congress for legislative fag-bashing, claiming public safety as their cause. Others, particularly some religious fundamentalists, see the epidemic as God’s curse on homosexuals. Reports of discrimination against gays are up. Even in the words of some apparent gay sympathizers one can detect disapproval, an insinuation that alleged gay promiscuity necessarily has its price. You sleep around like that and, well…

Although screening tests are helping to guarantee a safe national blood supply, many blood recipients are frightened. There has been a national decrease in the amount of elective surgery performed, presumably because of people’s fears of being infected with dangerous blood.

AS FOR RISK to the general public, people should be concerned. The virus that causes AIDS -HTLV-3-is transmitted sexually or through blood; no group of people is immune to it. “The virus doesn’t know if you’re gay or straight,” explains one doctor. “No one is safe by association.” Although traces of the virus have been identified in tears and saliva, no evidence implies that these are likely modes of transmission. Also, the virus is fragile and can’t survive outside its host. “We know,” says Karen Herndon, RN, AIDS coordinator for the County Health Department, “that if it were transmitted through saliva, tears and sweat we’d see food-borne outbreaks, family spread and hundreds of thousands of cases. We can’t say that it couldn’t happen, but the evidence suggests that it doesn’t, and we don’t expect to see that.”

That AIDS has remained relatively confined to its original risk groups is evidence that it is not transmitted casually. For the most part AIDS has struck gay men. In Dallas, this has been particularly true. All but 10 of the 187 cases totaled in the August 21 surveillance update for the county represented gay or bisexual men. Of the remainder, one man and two women were intravenous drug users; two women and three men apparently had contracted the disease through blood transfusions; and one woman was listed under the category “heterosexual contact.” (In the tenth case, a woman died before her risk affiliation was determined.) The virus must be introduced into the bloodstream, which can happen through intimate sexual contact, blood transfusion or injection by an unsterilized syringe. But it can happen to anyone.

A test that detects antibodies to HTLV-3 can determine whether or not someone has been exposed to the virus, but not whether the person currently has the live virus or is capable of spreading it, and not whether he or she will come down with AIDS. So far those exposed to the virus have shown a 10-to 20-percent likeliness of contracting AIDS. It isn’t known yet if or why certain people might be less susceptible to the virus than others. While there are many AIDS patients with histories of battered immune systems and multiple opportunities for exposure, there are examples of people with little prior incidence of disease and few opportunities for exposure who get it anyway.

Despite explanations in the press that casual encounters cannot spread the virus, the Health Department answers dozens of calls each day from frightened people who have to be assured that AIDS cannot be contracted from doorknobs, hot tubs, beauty salons, nursery schools or sweat. At the gay- and lesbian-oriented Oak Lawn Counseling Center, the AIDS hotline now rings about a hundred times a week. “You wouldn’t believe the questions,” says Dianna Garcia, an AIDS counselor at OLCC. “We hear everything.” She recalls one woman who was concerned about the risk of getting AIDS because 10 years ago she swam in a pool’with a man who might have been bisexual.

The theme of AIDS Awareness Week could be “Don’t panic, but…,” because as much as the sponsors want to shake misconceptions, they also want action. Medical science has learned a great deal very quickly about something that five years ago didn’t have a name, but funding and support for AIDS education and patient support and care have been slow and negligible. The city plans to lend AIDS Awareness Week its stamp of approval, as well as the use of rooms in City Hall, but beyond that, Dallas’ commitment to the problem has been slight. Two years ago, the city council nervously passed a resolution that encouraged the fed eral government to spend more money on AIDS research, but the resolution passed on a consent agenda, a long list of motions that don’t have to be read aloud, so no one even knew it went through.

Now Dallas is starting to feel the pressure. Last August, county officials decided to ask the Centers for Disease Control for a $563,000 one-year grant to study the local prevalence of the HTLV-3 virus, and the city’s Health and Human Services Commission requested that the city earmark funds for a full-time AIDS health educator. Still, city-sponsored assistance with counseling and care is nowhere in sight. And some health workers fear that the money being requested to establish an education program-which some city officials feel should come from existing funds-probably won’t be enough.

If the CDC surveillance grant is awarded, a staff of 14, under the jurisdiction of the County Health Department, will try to identify people who have been exposed to the virus, through contact with known AIDS victims or others known to have the virus, and test them for exposure. Since last June, the Health Department has been giving the antibodies test, which private physicians also offer, as part of a state-wide testing program to anyone wanting to take it. Even though they charge only $10 for the testing, only a few hundred of their thousands of test kits have been used, partly because of a controversy surrounding the test-a controversy that will heat up if the Health Department gets its grant.

Leaders of the Dallas Gay Alliance, taking their cue from national gay political groups, have advised gay men not to take the test. They fear that the results could threaten a person’s employment and insurability. Even if the Health Department promises confidentiality, they say, there is nothing in the law to protect the test takers’ rights should a government agency decide to intervene later. They argue that because the test only indicates exposure to the virus, it has no use outside the blood banks and will only serve to frighten those who test positive. Gay leaders also worry that the brief counseling accompanying the test isn’t enough considering that the test results can be traumatic.

The Health Department, which is now encouraging the test, argues that the disease can only be contained if carriers of the virus are aware of who they are. But the confidentiality problem persists. The Health Department’s plan to use the federal money for unspecified “innovative control programs” is already raising hackles at the Alliance. The U.S. military has implemented mandatory testing of all recruits and is turning away anyone who tests positive. At least one state, Colorado, has decided that the names of everyone who tests positive-whether at a clinic, blood bank or through a private physician-must be reported to the State Health Department. Local gay leaders fear similar reactions here.

THIS RIFT ASIDE, the DGA and the County Health Department have been close allies in the war against AIDS. In particular, the gays have found a friend in Karen Herndon. Working under a state grant, Herndon coordinates surveillance of the spread of the disease in the county, but she has taken it upon herself to be more than a monitor of the epidemic. In conjunction with the DGA and the OLCC, as well as with medical and social workers, she is trying to alert and educate Dallas. Before, the job of informing the community was shouldered almost completely by the gays. “They were ahead of us,” says Herndon. Hers is not an easy job considering her tiny budget. “We’re doing what we can,” she says, “but we’re poor folks.”

Nonetheless, Herndon has made progress where others could not. Last fall, realizing that AIDS efforts in the community” were fragmented and that groups were duplicating one another’s work, she got together with members of the DGA and called an “AIDS meeting” at the County Health Department. Herndon and Mike Richards, the Alliance’s representative to the national Federation of AIDS-Related Organizations, wanted to know who in the community was already involved in AIDS work and who was concerned. Anyone interested was invited. That meeting soon became the AIDS Coordinating Committee, an unofficial committee that meets once a month to share information about the crisis and plan strategies. Recent gatherings have included representatives from not only DGA and OLCC but from Parkland Memorial Hospital, Baylor University Medical Center, the city’s Health and Human Services Commission, the Veterans Administration Medical Center, the gay-supported Metropolitan Community Church and the American Cancer Society. What started as a handful of confused people glad to have found comrades in arms now packs a conference room in the County Health Department; it’s the closest thing Dallas has to an AIDS task force.

But the ACC is not a task force; it’s only a clearinghouse for information and a base camp. The members of ACC are working as private citizens without salary, funds or official sanction. “AIDS,” says DGA President Bill Nelson, “is not really a part of anyone’s official agenda.” Herndon’s goal now is to make the ACC an official, free-standing organization, but that’s going to take resources beyond what she has.

The problem of convincing the general public of the seriousness of AIDS is analogous to what Dallas’ gay leaders found themselves up against three years ago when they began alerting their own community to the hazard. “We went through that initial frustration of saying ’Oh, you’ve got to listen, this is serious,’ ” says Nelson, “and people would say ’Oh, leave me alone, I don’t want to hear that.’ And then when somebody’s friend from San Francisco would die from AIDS, or somebody’s friend here would die, all of a sudden there was this swell of concern and even anger-Why aren’t you people doing something about this? Why don’t you tell people about this? You’ve got to do something.’ ” Some of those who’ve been involved in the crisis worry that Dallas won’t be galvanized until more heterosexuals die.

While the Health Department and the DGA work to direct public attention to the AIDS crisis and to control the spread of the disease, the Oak Lawn Counseling Center is trying to meet the complex psychological needs of people with AIDS and of the frightened gay community. The mental health care organization, which is geared toward gays and lesbians, offers counseling to AIDS patients, their lovers, families and friends, and provides regular counseling and public awareness forums. They see about 500 people each month, including several dozen victims of AIDS.

Professional counselors and psychotherapists, who work on a contract basis through OLCC, give free private counseling to people with AIDS (PWAs, to use a common term). The task is especially sensitive: AIDS patients must face not only their own imminent deaths, but the trauma of being ostracized-sometimes by their lovers and families. Some are wracked by guilt. OLCC holds weekly group therapy for PWAs in the organization’s small house on a quiet deadend street in Oak Lawn. The group is informal-family and friends are invited-and usually 10 to 15 people show up. As informal as they are, the meetings are understandably charged. “We deal with an unbelievable amount of fear and anxiety,” says OLCC’s executive director, Bill Appleman.

Appleman coordinates the center’s AIDS Project with Howie Daire, a private counselor and founder of OLCC. Daire heads up OLCC’s volunteer program, which includes the successful Buddy Program-or “the Buddy System’-initiated in early 1982 and modeled after similar programs in San Francisco and New York. The Buddies are volunteers, many of whom each take on a PWA to help him with errands, getting around town and household chores-and to be a friend. An assigned Buddy has to plan on being a buddy for the rest of his PWA’s life.

The tasks aren’t always simple-Buddies have to cope not only with a PWA’s physical illness but with his bouts of depression and anger. He can be called upon to fulfill the roles of maid, nurse, counselor and punching bag. Lovers and family, also traumatized, can make the Buddy’s work all the more difficult. OLCC trains the prospective Buddies carefully, teaching them about the psychological needs of PWAs, as well as everything from how to give sponge baths to the legalities of writing a will. Presently about 30 Buddies are assigned to PWAs; amazingly, there is no shortage of volunteers.

The OLCC has also taken an active role in teaching area nurses and hospice workers about the psychological needs of AIDS patients. Unlike in other cities, where there have been horror stories of patients being refused proper care by frightened or biased nurses and orderlies, the Dallas medical community has responded sensitively and intelligently to the crisis, no doubt helped by the AIDS Coordinating Committee, which has been an information source to hospital administrators and nursing groups like the Visiting Nurses Association, a hospice organization taking part in AIDS Awareness Week by teaching home-care procedures to people who work with PWAs.

Appleman believes OLCC’s counseling and education role soon could be pushed beyond its limits as AIDS spreads. So he and his small full-time staff are trying to train other groups and individuals in these areas. They hope to disseminate their knowledge to communities around the state that are beginning to have the same AIDS needs.

OLCC’s Project AIDS is the only multifunction AIDS program in the city, though it’s not an independent organization like Houston’s KS-AIDS Foundation. (The KS stands for Kaposi’s sarcoma, an otherwise rare cancer that strikes many AIDS victims.) New York City, which has counted more than 4,000 AIDS cases, the most anywhere, has a score of AIDS organizations that provide everything from hotlines to legal services, including the pioneering Gay Men’s Health Crisis, started by volunteers in 1982. San Francisco (with 1,400 cases) has shown the most exemplary AIDS support with dozens of private groups like the Shanti Project, which cares for disabled PWAs. That Dallas doesn’t have a real AIDS organization is surprising considering the number of AIDS cases already here and the greater numbers to come.

Comparisons to New York and San Francisco are not pointless: the difference between their numbers and our numbers is but several years-and several thousand lives- apart. But while New York City and San Francisco have spent several million dollars each on AIDS for support, research, care and treatment, and San Francisco has recently pledged an additional $9 million, Dallas hasn’t spent one penny.

BUT ALREADY AIDS is exacting its price in Dallas. Parkland, which has treated dozens of AIDS patients so far, is anticipating annual AIDS-related expenditures in the millions of dollars. The average cost of a PWA’s treatment, including hospitalization, from the time of diagnosis to death is about $100,000. Parkland is trying to establish an AIDS clinic-the first in Dallas-but is having trouble finding a doctor to run it.

There’s no doubt that AIDS’ association with gays has kept the disease in a sort of community closet. “Because this disease has been associated with that whole set of prejudices,” says Nelson, “it’s fallen prey to the same kind of ignorance.” AIDS has reminded gays of their peripheral and precarious place in society. Some fear a backlash by straights who blame the disease on gays. While the scattered cries by extremists for “quarantine” can’t be taken seriously, gays aren’t laughing.

Just as the Health Department was taking its more aggressive posture on viral testing in late August, the Fifth U.S. Circuit Court of Appeals in New Orleans overturned Judge Jerry Buchmeyer’s 1982 ruling that had declared section 21.06 of the Texas Penal Code-the so-called sodomy statute that outlawed certain sexual acts between members of the same sex-unconstitutional. 21.06 is back on the books, although the plaintiff in the original trial, former DGA president Don Baker, plans to appeal the Fifth Circuit’s 9-7 verdict to the U.S. Supreme Court.

Buchmeyer’s decision was challenged by Potter County District Attorney Danny Hill, who appealed on behalf of all Texas district attorneys, despite State Attorney General Jim Mattox’s opposition to the appeal. Hill was supported, in part, by Dallas Doctors Against AIDS, a lobbying group that gathers “evidence” that unchecked homosexuality is dangerous to public health. The thrust of the evidence presented by Hill’s attorney concerned AIDS, but when the verdict was returned, the court’s opinion didn’t mention AIDS. Apparently, the case was weighed on whether 21.06 is unconstitutional and whether a state has the right to decide moral issues for itself. But that still makes criminals of Texas’ several million homosexuals, including an estimated 180,000 in the Dallas area.

The decision doesn’t ease anyone’s fears about the HTLV-3 antibodies test and its confidentiality risk. There is a legitimate worry that such rulings could actually produce more AIDS victims. Fear of the law, of public condemnation and of job discrimination could keep high-risk individuals from taking the viral exposure test and cooperating with health workers in restraining the spread of AIDS. “Changing the statute,” says Jim Barber, the Dallas attorney who represents Baker, “won’t stop the spread of the disease.” Already, the stigma of AIDS keeps some victims from going to a doctor when symptoms appear. Dr. Richard Olson, who in his Oak Lawn practice has already seen more than 30 AIDS patients, tells of several who came to him after other doctors had refused them. Also, because diagnosis and treatment depend upon a patient’s frankness with his doctor, “the patient must feel comfortable, must feel he can first say, ’I’m gay,’” says Olson. AIDS may hide as long as gays have to hide.

The Fifth Circuit decision holds implications beyond the sodomy statute. Because the court declared that “implementing morality [is] a permissible state goal,” gays will surely have to contend with bills in the 1987 Texas Legislature seeking to pry on both sides of bedroom walls.

Backlash on a more personal level-such as in hiring-is feared by some gays, but the DGA’s Nelson isn’t intimidated. “One of the biggest impediments in the way of the gay movement,” says Nelson, “is this imagined, mythical million-headed monster called backlash. I just can’t live under that specter. I have to believe that people are compassionate and can be educated.”

Nelson thinks fear of AIDS is partly a fear of homosexuality based on sketchy stereotypes. “I think there’s a general perception that gay people are immoral, promiscuous- and that they are also somehow ’out there.’ People think they don’t know any gay people, but they do. People don’t want to be associated with gay people so they don’t want to be concerned about this disease.”

Nelson’s concern with AIDS extends beyond the health risk to his constituency. “I see something very scary developing,” he says. “I see people taking this as an opportunity to tell gay people not just to stop having sex, but to stop being homosexual.”

MIKE RICHARDS IS a handsome man with dark hair, a strong, slightly stocky build and a smile that conflicts with his worried brow. He is sitting in a small conference room in the offices of the Alliance on Cedar Springs, drinking coffee, talking about AIDS. He says it seems he is always talking about AIDS, but the concern in his voice sounds fresh, urgent. “Awareness Week is not for the gay community,” he says. “It’s for the non-gay community to get the facts about AIDS and to understand that we’ve all got a serious problem here.” Richards is familiar with how serious the problem is-he knows the statistics and the projections-but statistics and projections aren’t as compelling as the faces of the friends he has seen die-three of them, once, on the same day. He guesses he has known, at least casually, about 40 people who have died of AIDS. That’s a lot of death for a man of 39 to see.

Richards acknowledges that his work-his fight-is hard, “but it has to be done.” He worries about community awareness, lack of funds and gay civil rights, but throughout the conversation he remains peaceful, hopeful. Only one thing incites him to visible anger, a reference to a recent Life magazine cover that declared, in huge type, “Now No One Is Safe From AIDS.”

“No one,” says Richards, “was ever safe.”

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