werner@aecom.UUCP (Craig Werner) (01/03/85)
<><><><><><><>><><><> Second of a set of occasional articles on AIDS AIDS is an acronym for Aquired Immune Deficiency Syndrome. Some notes on that name: Syndrome is a technical term meaning we don't know what causes it, or exactly what it does, but it appears often enough that we need a name. AIDS has up to now been diagnosed not directly but by the appearance of certain opportunistic infections, such as Kaposi's Sarcoma. [Incidentally, AIDS-associated Kaposi's Sarcoma generally only occurs in Gays, IV-drug users tend not to show Kaposi's but tend to show other opportunistic infections.] By this time, the immunosuppression characteristic of AIDS has already occurred and the disease is invariably fatal within a few years. (7000 have already died.) Now there is a way to detect exposure to the virus that reputedly causes AIDS, HTLV-3. It is a simple blood test, easy to do and very reliable. It involves antibodies to the virus. Some sample data on the test: Group % HTLV-3 positive AIDS patients 99.7% pre-AIDS ~90% Healthy Homosexuals (in SF) ~70-80% IV Drug Users [I don't have this one ~50%?] Hemophiliacs required F-VIII ~30% Random Healthy Heterosexuals 0.003% The test is not in wide use, however, for several NON-MEDICAL but rather POLITICAL reasons. The first is reporting. Since no one knows what a Positive sign means. (Several of the Healthy Homosexuals who were tested AIDS positive later came down with the disease, but it was a very miniscule percentage.) Do you tell someone? The psychic risk was judged to be too great by some. The second reason is similar. The test was designed to protect the integrity of the blood banks. Therefore it was suggested to keep a registry of those with HTLV-3 Positive blood (Like ABO and Rh typing) and only use that blood for research purposes not for transfusion. [It is done now in NY by a consent form which is confidential.] Well, Gay groups protested vigorously. Look at the data and see why. The test is very good for identifying those with AIDS. But it is almost as good for identifying homosexuals (at least in SF - other parts of the country may vary.) and they feared labeling. Articles could be written on this alone, but I must go on. The third reason is that people feared that people who may have been exposed to AIDS might be more likely to give blood (using donation as a diagnostic test) to see if they really have the disease, causing much more contamination of the blood supply than already exists, especially if the test is not available in large enough quantities or is not sensitive enough and misses some HTLV-3 contaminated blood. The variations are enormous, but I prefer shorter articles. Next time: AIDS in Africa, Heterosexual Transmission. -- Craig Werner !philabs!aecom!werner What do you expect? Watermelons are out of season!
rrizzo@bbncca.ARPA (Ron Rizzo) (01/04/85)
7000 people have died? The number of people with CDC-defined AIDS isn't much more than 8000, if that, as of December 1984. I believe approximately 50% of these have died (it may be 45%), so the number of AIDS deaths can't be more than 4000.
rrizzo@bbncca.ARPA (Ron Rizzo) (01/05/85)
Craig Werner writes: > [Incidentally, AIDS-associated Kaposi's Sarcoma generally only occurs > in Gays, IV-drug users tend not to show Kaposi's but tend to show other > opportunistic infections.] There are two forms of KS associated with AIDS: the "traditional" nonlethal skin cancer (call it KS1), & a novel (?) internal kind found in lymph glands which also invades other organs (call it KS2). I believe every KS1 AIDS patient tested for KS2 has had it, AND that non-KS1 AIDS patients tested for KS2 have ALL had it. Have searches for KS2 in nongay AIDS patients been made? > Now there is a way to detect exposure to the virus that reputedly > causes AIDS, HTLV-3. It is a simple blood test, easy to do and very reliable. > .......The test is not in wide use, however, for several NON-MEDICAL but > rather POLITICAL reasons. There is at least one MEDICAL reason for not using the test: it's not "very" reliable. A group testing positive for HTLV-III on the bloodtest tested NEGATIVE when a much more accurate & expensive test for HTLV-III was given. The bloodtest can give FALSE POSITIVES. See recent issues of the NYNative for details. "Political" as used here is basically a putdown. It suggests less than fully valid, serious, or relevant reasons. There are many GOOD reasons (label them what you will: legal, monetary, social, medical) for not using/taking the bloodtest, which can be subsumed under the heading DISCRIMINATION & ABUSE. Namely, serious & probable risk of: loss of medical insurance: Blue Cross/Blue Shield & other medical insurance plans were REFUSING to cover homosexuals a while back; I don't know if they still are loss of job, career, & income loss of housing assorted discrimination by people around you who know if you've tested positive discrimination & abuse by doctors, nurses, other medical staff & institutions All of the above have happened more than a few times to AIDS patients. The 200,000-300,000 gay men who VOLUNTEERED for the bloodtest were told after the fact by the highest medical official in the land that he & others COULD NOT guarantee confidentiality of results, even though it had been promised to them (subsequently, he & other top officials & physicians have urged people NOT to take the bloodtest because they could not guarantee that the results wouldn't find their way to insu- rance companies & employers). There have been reports of the above happening in a few cases to people simply because they were gay, knew AIDS patients, had ARC (AIDS Related Complex: vague symptoms that may be a precursor of AIDS 10% or less of the time), or merely had been tested. Given public hysteria over AIDS (including within the medical profession), homophobia in groups like the Southern Medical Association, and maltreatment & panic among some health care & public employees, use of the bloodtest has more than merely "partisan" obstacles. These reasons are far more important than any "psychic risk" of inflict- ing "AIDS anxiety" on poor gays who test positive: many gay men have lived with far more severe anxieties for years now without "succumbing" psychologically. Merely to exist as a gay person in this society is to be a "survivor". > Well, Gay groups protested vigorously. Look at the data and see why. > The test is very good for identifying those with AIDS. But it is almost as > good for identifying homosexuals (at least in SF - other parts of the > country may vary.) and they feared labeling. Articles could be written on > this alone, but I must go on. Articles HAVE been written on this, for a number of years now. Read the gay press or Village Voice, & especially the New York Native, which has the most extensive coverage. Ignoring false positives, the test is very good for beginning the process of testing for AIDS. But given statistics to date, only a tiny fraction of those testing positive can be expected to eventually develop full-blown AIDS. The test DOESN'T identify those with AIDS. The main objection to the test is NOT that it will force people out of the closet, but that ALL gays testing postive, whether "in" or "out", will be TREATED as AIDS carriers. (Of course, in some situations, being suddenly & involuntarily "out" can create problems.) I must admit I found Craig's first article very interesting, & thought- provoking. But he ought to be more accurate & up-to-date. I'm a mere layperson who simply reads the gay press regularly, yet I get the impres- sion I'm better informed. That's a little scary. Regards, Ron Rizzo
mef@wucs.UUCP (Mark Frisse) (01/08/85)
Your observation about the gay press may be accurate.
Having cared for gay patients early in the AIDS story,
I found the articles my patients brought me from the
gay press to be "ahead" of the articles in the scientific
literature - probably because of the lengthy critical
review process applied to scientific publications.
Two points:
1. We don't know how many patients exposed to HTLV will
get the full-blown aids syndrome - it may take a few
years to find out.
2. Blood banks are going to start screening blood for
HTLV very soon. What will they do with the information?
What are there responsibilities to the donor and the
public?
Mark Frisse, M.D.
Editor,
Washington U. Manual
of Med. Therapeutics