BACKING INTO THE FUTURE
The issue of reportability of AIDS virus infection seems to have become the main focus of those within Denver's gay male community who have openly and actively opposed HB1177. One of the major concerns is that records kept by the health department on infection with the virus may someday be used to discriminate against gay men. This concern may not be inappropriate. However, everyone must realize that such records already exist for other sexually transmitted diseases (syphilis, hepatitis B etc.). These diseases are also markers for sexual preference and for the most part the record of infection for these illnesses contains real identifiers, unlike the AIDS virus records which may be falsified and therefore contain untraceable information.
That gay men are skeptical and distrusting of health departments and most societal institutions, in general, is historically appropriate. What's important to realize though about society's reaction to AIDS to date, as it has affected gay men and I.V. drug users, is that the response has not been one of over reaction but rather no reaction at all. The response of much of mainstream America has been: "they have it coming, it's their problem." Gay men who have lost many loved ones should be angry about this and should at the same time learn an important lesson about the status of gay people in our society. Part of the numbness many gay men, especially white middle class ones, feel around the colder attitudes of society towards AIDS comes from the realization that much of the privilege that comes with being a white male in our culture is lost when it becomes gay white male. Gay men have been aware on a very gut level since the beginning of the epidemic that as far as society as a whole is concerned we are an expendable commodity. This societal attitude has taken on the status of national policy ― Reagan won't even say the word! Our position is not a powerless one however. We have many straight allies in the medical world, among family members, friends and coworkers. It is time for a bold gamble on the AIDS front and that is to begin insisting at every turn that it be treated as any other non-casually contagious illness!
We buy into societies attitudes about us and actually reinforce them in our insistence that infection with this virus be treated anonymously. By wanting this disease treated differently from others we reinforce the idea that AIDS is bad and so are the people who get it. Liberace's death is a classic case in point. It was front page news because he had AIDS. The sad part, however, wasn't that he died of AIDS but that he lived a lie and died a liar. He reinforced in a very dramatic fashion the falsehood that gay is bad and having AIDS even worse.
Much of my opinion on HB1177 will be dismissed in certain circles because I'm viewed as a dupe of Frank Judson and Tom Vernon. (Get over yourselves you dizzy queens, they don't write my articles, in fact they don't even read them!) Here it is anyway: I really don't believe it will make any difference in the outcome of this epidemic, as far as gay men are concerned, whether the bill passes or not. We may continue to get the short end of the stick with this epidemic, but this bill will not influence that outcome. One possible positive outcome if the bill does die in the senate would be the end, hopefully, of a very dangerous polarization that has evolved between certain segments of the gay male community and the health departments.
Reportability exists for only one legitimate reason and that is contact tracing, which is letting those who have been exposed to an illness know that they have been. We all know that the health department has done this for years with syphilis and other sexually transmitted diseases. The reason contact tracing has been dismissed in regards to AIDS is that it was felt the virus was already so widespread in the gay community and gay men had so many anonymous partners that contact tracing was a useless waste of time. To dismiss doing all contact tracing in all gay communities across the country for these reasons I find interestingly homophobic, but that's another article. Where contact tracing could potentially be of real benefit in containing the epidemic within its current risk groups is with those heterosexuals, especially I.V. drug users, who are infected. Health department propaganda you say, well think about this: "San Francisco has been quietly running a case tracing program - for heterosexual transmission only - since April 1985. Here's how it works: when a physician first diagnoses an AIDS patient, he or she is supposed to ask whether the person has had any heterosexual contacts in the last eight years. If the answer is yes, a worker from the health department asks for the names. The caseworker tries to locate the contacts, never mentions the name of the original case, and suggests that they may want to be tested for antibodies to the AIDS virus. If the person refuses there is no coercion." (The New Republic Feb. 23, 1987.)
Why would they be interested in contact tracing in this group and not others? Simple! Here is a conduit into mainstream society. In Colorado where the incidence of AIDS virus infection among heterosexual I.V. drug users is less than 5% (based on a couple of different studies) contact tracing could be very beneficial. It's of no use in New York City where 75% of the I.V. drug using population are infected. It's too late!
I do think contact tracing can be done in the gay community without trampling on individual liberties. Someone telling you bad news you do not want to hear is not a major infringement on your civil liberties. A disturbing development I've become aware of in the past year are young gay men infected with the AIDS virus who have never had any other sexually transmitted disease. We are not talking "fast lane" people here for the most part. If we had had this antibody test in 1981 along with very vigorous contact tracing, tens of thousands of lives could have been saved. A very difficult question to ask about this is why isn't it being done now, especially in populations that have a low or medium incidence of viral infection?
I think many of the fears around reportability are inappropriate and misplaced, but I do understand their genesis. Get tested if you think you can handle it emotionally and make up a name if you need to do that. But please don't give false information about your risk of infection. That recommendation coming from certain members of the Coalition for Political Responsibility (CPR) is the most irresponsible thing I've heard in a while, a great example of petty and angry personal agenda getting in the way of common sense. The creation of an erroneous epidemiologic data base is of benefit to no one, and may be very detrimental in the long run. Furthermore we do not want *» a rise in the number of positive individuals in the No Identified Risk (NIR) category. Everyone, especially the reactionary right, watches that category closely as an indicator as to whether or not the virus is moving into the "mainstream" of society. If you lie that you have no risk of HIV infection when you actually do you will falsely inflate that category. What has kept truly repressive quarantine measures (a la Bill Armstrong) at bay to date is the epidemiology of the disease, that it is impossible to transmit this virus through casual contact.
For those of us infected with the virus and who know it I do think there are more pressing issues than this HB1177. The development of effective drugs (antivirals) to contain the AIDS virus is progressing fairly rapidly. For those infected the development of these medicines can't progress too fast. A difficult realization I've come to in the past year is that I will deal with this infection for the rest of my life.
One of the strangest ironies in all of this is that AIDS is reportable in all 50 states and nobody seems to object to that. A realization made in the medical community some time ago is that AIDS is only the tip of the iceberg and that the spectrum of AIDS virus infection ranges from not ill, but infectious, to very ill and probably still infectious.
Based on what we now know I believe that a very significant majority of us infected will eventually develop some sort of health problems related to viral damage to the immune system. Data coming from San Francisco shows a dramatic jump in the percentage of those developing AIDS 7 years after infection.
The one ray of hope on the horizon though are the antiviral drugs. A significant number of AIDS patients are apparently already benefiting from AZT, at least on a short term basis. These antiviral drugs will probably be most effective when they are used early in the natural history of AIDS virus infection before the virus changes from a dormant form to an active phase damaging your immune system and making you sick. This sort of antiviral intervention is close; we are on the doorstep right now. It will not happen that we will be treated with these drugs anonymously. Though I think medical confidentiality can be maintained in the treatment of HIV infection, the simple act of writing a prescription for one of these drugs will blow anonymity. We will not be able to simply pull up to an "antiviral drive-up window" with a ski mask on and be handed the drug.
My point is that all this hue and cry about anonymity is a cruel delusion totally out of step with the reality of the infection with which we are dealing. A much more mature approach to the issue demands extensive dialogue on the realities of HIV infection from the perspective of a lifelong infection that will cause problems for most of those infected. Even private physicians are not going to hand these drugs over from a large box under their desks. These drugs will probably not be cheap and their management will be sophisticated and lifelong.
In my experience with dealing with hundreds of gay men over the past several years who have struggled with the issue of whether or not to be tested, what holds most back is not fear of reportability (though many do use false names) but rather the emotional issues around the possibility of testing positive.
It's easy and safe to say I won't get tested because of reportability, but further discussion inevitably leads to very real fears of knowing you are infected with the AIDS virus. It is essentially universal knowledge that you can use a false name. Perhaps all this dancing around this issue is what we need to be doing right now, but we must grasp the reality of HIV infection and the new knowledge and advances in treatment we are learning every day has already made anonymity a moot point.
While certain individuals and organizations in the community have been stirring up lots of fears and have people looking over their shoulder for the health department, HIV infection and society's reaction to it is about to run us over from the other direction. Their is at least one major life insurance company in town that tests for HIV when the applicant is a single male. There are small employers in the area who use HIV antibody testing as part of their pre-employment physicals. I would call everyone's attention to the ad run frequently by Vitro Diagnostics Inc. Offering AIDS and drug screening for corporations and individuals. Their ad says: "Write or call today for our fee schedule. Companies have discovered that, an ounce of screening is worth a pound of future expense." (Emphasis theirs.)
In discussing reportability with men currently getting tested for the first time the main issue seems to be their insurance and they opt to use a pseudonym on this basis. I don't try to talk them out of this but they need to be aware that if insurance companies want this information they will get it on their own. They will not obtain it from the state health department records. In a recent piece in Andy Warhol's Interview Magazine Dr. Matilda Krim had this to say about insurance: "Obviously our private health insurance system cannot pay for this (the AIDS epidemic), and this is why these companies are so nervous. They are going to start dumping those they consider high risk. There is no use griping they have the right in our system, which is a free market, capitalistic one to drop people they don't want as clients. The insurance companies are not here for the public good; they're here to make money, and nobody can oppose their eliminating clients."
Those of us infected with the virus need to get a good handle on what is and isn't a threat to our survival. The possibility of health department records being used in a repressive manner exists. Gay men however do not live in isolated vacuums away from the rest of society and testing for this virus is being incorporated into the social fabric. The technology of HIV antibody testing has progressed to the point where it could be done in the home by this summer. This will make it quite easy to do in the office, the jail, at customs--anywhere and everywhere you can think of! Discrimination based on misinformation as to what these test results mean will,at least in the short run,become much more common. Currently the major defender of people facing discrimination as a result of being antibody positive is the health department. We will all have to become active in confronting this sort of discrimination. A significant number of gay men are boldly assaulting the barricades of HIV discrimination by being open and public with their positive antibody status. This approach certainly/isn't for everyone, so give it careful consideration before embarking on a career as an antibody activist.
It's not safe to be gay these days, it never has been. To be gay and infected with the virus puts you in even more jeopardy. That isn't fair or right, but it sure is and won't change if we continue to buy into the belief that AIDS is something bad happening to bad people and in my opinion that is the underlying message of anonymity.
The most pressing issue I see facing people with HIV infection in Colorado isn't HB1177, but rather who is going to pay for AZT! And in a much broader sense what a horrible American tragedy that only those of means and privilege are guaranteed the best health care possible.
Be well !!!