Alberta Reappraising AIDS Society

David Crowe, President
Phone: +1-403-289-6609
Fax: +1-403-206-7717

Roger Swan, Treasurer
Box 61037, Kensington Postal Outlet
Calgary, Alberta T2N 4S6
Phone: +1-403-220-0129

How Can you Cure AIDS If You Can’t Define It?

David Crowe
October, 2010

I am often asked if there will ever be a cure for AIDS or, if I don’t think HIV causes AIDS, what does? I used to try to answer that question missing the obvious – What is AIDS?

1981 – Gay Related Immune Deficiency (GRID)

When AIDS began in 1981 it was called GRID – Gay-Related Immune Deficiency. This was on the basis of the unexpected occurrence of the skin disorder (probably not a cancer because it commonly goes into remission) Kaposi’s Sarcoma (KS) and the severe lung infection called Pneumocystis carinii Pneumonia (PCP), usually only found in severely immune-suppressed patients. The first paper, in June of that year, reported 5 young gay men with PCP. Only two of the five were described as promiscuous and none of them knew each other or had any known sexual partners in common. Despite the fact that all 5 “reported using inhalant drugs” the author leaned towards an infectious explanation – Cytomegalovirus (CMV).

The second paper, published a month later in July, added KS to the mix. 26 patients in New York and California had been reported with this condition of which 10 had pneumonia (not all diagnosed as PCP and, interestingly enough, in 7 cases diagnosed only after visiting their doctors and probably receiving powerful, immuno-suppressive therapy). The use of inhalant drugs (e.g. poppers) was not mentioned but the CMV theory was.

GRID, therefore, was a disease among a tiny number of gay men in a couple of US cities, with lifestyle factors such as drug use, poverty, homelessness and malnutrition largely ignored. Later these men were called “previously healthy young men” with few people realizing that “previously healthy” is a formal medical term that only means that they had not previously been hospitalized for a serious condition, it does not mean that they were previously healthy.

1983 – The Rise of AIDS

By 1983 the syndrome had the much more politically correct term of AIDS. This pleased both the gay men who did not like the stigma of the original name and researchers who now could see the possibility of a disease of global importance, rather than an exotic disease among a handful of gay men in a handful of US cities.

The definition had expanded to include any of eleven broad types of infection “at least moderately predictive of cellular immune deficiency” and active surveillance had now found 1,000 people to fit this definition. The panic had begun.

The wider net had also drawn in people from other groups, not just gay men, but also bisexual men, hemophiliacs (exposed frequently to immune-suppressive blood products), IV drug abusers (who frequently inject substances into their veins produced without quality control) and Haitians (who had likely endured malnutrition and who were later removed from the red list). Despite this 61 people did not fit any of these risk groups and were considered to represent the “background” rate of KS, of no significance.

The authors of the 1983 paper taken as the new definition of AIDS by the CDC claimed that “a single-infectious-agent hypothesis would seem to explain much of the AIDS epidemic” but, “certain epidemiologic observations remain puzzling…what explains the excess of KS cases among homosexual or bisexual men compared with other AIDS risk groups”. They might have added the lack of evidence for contact between the groups. They did mention the use of inhalant drugs but relegated this to a possible cofactor for development of KS, but without giving any reasons did not believe it could be the cause.

1987 – The AIDS Maze

By 1987, the official AIDS definition in the United States (and other western countries) had taken on its puzzling modern complexity. Not only had the list of infections grown but it had become a complex tree of decisions, including questions such as whether there was a positive HIV-test, inconclusive test, negative test or no test at all, and whether the patient had any other reason for immune deficiency. In a small, easily overlooked section at the end, this definition explicitly allowed people with a negative HIV test to be diagnosed with AIDS as long as they did not have one of the three other recognized causes of immune deficiency, had an AIDS disease diagnosed definitively (e.g. by biopsy and as opposed to a presumptive diagnosis) and had a CD4 cell count under 400 per cubic millimeter).

The expanding definitions meant that by late 1987 more than 40,000 cases had been reported in the United States. This year was also important as it was when the first AIDS drug, the nucleoside analog AZT, was approved in great haste in a climate of fear and panic. AIDS cases continued to rise dramatically.

1986 – The Forgotten Poor Forgotten No Longer

Now we have to go back a few years. These complex definitions involving expensive laboratory techniques such as HIV tests and CD4 cell counts were good for rich Western countries but were not practical for the poor parts of the world, particularly Africa. So, in 1985, the WHO and CDC got together in the city of Bangui in the Central African Republic and cobbled together a stunningly simple definition of AIDS. This was published by WHO in 1986 and is known as the Bangui definition. It is still in use today with only minor modifications.

“AIDS in an adult is defined by the existence of at least 2 of the major signs associated with at least 1 minor sign, in the absence of known causes of immunsuppression such as cancer or severe malnutrition or other recognized etiologies.” There were only three possible major signs – Loss of at least 10% of a patient’s original body weight; Diarrhea for at least one month; and Fever for at least one month (not necessarily constant). The list of minor signs was much longer but included cough persisting for at least a month, an itchy rash, and so on. A diagnosis of KS or Cryptococcal Meningitis could bypass this and, by itself, result in a diagnosis of AIDS.

No HIV test was required.

Soon everyone who was ill was being diagnosed with “Slim Disease” aka AIDS. Money flooded into Africa for AIDS but money for the underlying conditions that caused cough, diarrhea, weight loss, fever and itchy rashes continued to be virtually non-existent. Toxic drugs that have anemia as one of their major side effects were soon being prescribed to thousands and then millions of Africans, a place where anemia is a serious problem due to malaria, parasitic infections (particularly intestinal worms) and other causes.

1993 – AIDS Without Illness Rises to the Fore

In 1993, facing a decline in AIDS cases, the US CDC launched a massive expansion of the definition of AIDS, officially incorporating healthy HIV-positive people for the first time. Published in late 1992, the CDC, “expanded the AIDS surveillance case definition to include all HIV-infected persons with CD4+ T-lymphocyte counts of less than 200 cells/uL or a CD4+ percentage of less than 14.” No AIDS-defining illness was required. The 1997 Surveillance report of the CDC showed that by then 65% of people diagnosed with AIDS were in the category of low CD4 count with a positive HIV test AND no AIDS-defining illness. Many of them were probably perfectly healthy, but also perfectly terrified, HIV-positive people who had learned the newspeak that their CD4 count was health and that the health visible to their senses was not health. The CDC solved the problem of this embarrassing statistic, albeit published in an obscure corner of an obscure report, by never again publishing the breakdown of diagnoses after the 1997 report. Based on other regional statistics it is reasonable to assume that the percentage of AIDS cases diagnosed in the United States without any AIDS-disease continued to climb. The importance of this diagnosis is that it meant that thousands of healthy (or at least not terribly sick) people were slammed on AIDS drugs with their new AIDS diagnosis.

Other western countries had, up to this point, slavishly followed the US definition. However, no country is known to have included the low CD4 count definition other than the United States. When Canada last modified their definition in late 1993 they noted that they were following the lead of Europe and Australia in also accepting the entire US definition except the low CD4 count/positive HIV test portion. Notably the per-capita rate of AIDS in America has remained far higher than in other countries, about 10 times higher than in Canada for example, with which the US shares an integrated economy and the longest undefended border in the world. Yet the bug has a hard time crossing.

How Now AIDS?

So how can you talk about AIDS with this confusion? Individual definitions are so complex that they make your head spin…or are stunningly simplistic. Someone diagnosed with AIDS without disease in America would certainly not fit the African definition. And someone with fever, cough, diarrhea, weight loss and itchy rash would most likely not have a positive HIV test and would most likely not meet the American definition. The majority of Americans recently diagnosed without an AIDS definining illness could lose their diagnosis by heading north across the 49th parallel.

AIDS is a meaningless concept therefore any sentence that contains the word AIDS is meaningless. While we have to use the word because the world is in love with it this is official notification that I personally always have ironic quotes around it even if you cannot see them.

Copyright 2010 by the Alberta Reappraising AIDS Society.