Book review.


Elinor Burkett, 'The Gravest Show on Earth; America in the age of Aids' Houghton Mifflin Co. USA 1995, 400 pages, ISBN 0-395-74537-3.


This is a dangerous review of a dangerous book. The danger is in writing anything true about AIDS. Whatever you write, someone will hate you, and if you write enough, everyone will hate you. Moreover, telling only part of the truth in hopes that only part of the people will hate you does not work because in the swirling controversies, the acceptable truth today is tomorrow's genocidal propaganda.

For example, the evidence was clear early that Dr. Robert Gallo is a son of a bitch. At first AIDS activists found it perfectly acceptable to say so: Gallo's vain efforts to show AIDS was caused by his HTLV or a closely related virus, stymied AIDS research at critical time, and Gallo's claim to have found the cause of AIDS in HTLV-3 was at best the result of sloppy lab work and at worst, a conscious effort to rip off the French. Why shouldn't he be criticized?

Well, because he still has considerable clout in the federal health bureaucracy, and he still is the foremost retrovirus and HIV expert in the country. Not only is he our son of a bitch, he is a major son of a bitch and one of the best. In an American Congress, funding to follow up a discovery by an American scientist will always be easier to find than funding for research in which the French have precedence. Gallo-bashing was redefined as genocidal pandering to the likes of Jesse Helms.

Burkett tells the story of AIDS personality by personality, mostly tragic figures, though seldom the people who are dying of the disease. Larry Kramer: raising the alarm, frustrated, angry, so long right when others are wrong that he becomes convinced he must always be right, lost at last in his anger and hubris, first of many, many Cassandras. Montagnier: who really made the discovery Gallo claimed, but doesn't have the good grace ever to shut up about it or to cater entirely to American AIDS orthodoxy. Salk and Heimlich: old generals against disease, thrown into a battle they only dimly understood, certain to end ignobly for trying to fight old wars over. Doug Nelson: fighting for a little equity in AIDS-care funding and finding himself opposed by his heros, the first heros of the crisis who have too quickly turned into budget-hogging bureaucrats. It is a method of exposition that flirts with the excesses of tabloid television, but perhaps the only method our Geraldo-hardened attention spans can accept. The resulting picture is a double exposure: one of a complacent America laying in the sun, one of a spotlighted deer transfixed by conflicting impulses as it stares at its doom. It isn't just the lack of progress, but the lack of movement of any kind that is so maddening.

Much in this book is likely to comfort the likes of Jesse Helms. It is unavoidable; all the controversy is on the side that regards AIDS as a serious problem and that wants to do something about it. On the other side, the side of Jesse Helms and Fred Phelps, who shows up at the funerals of people who have died of AIDS with demonstrators bearing "Fags must die" placards, there is no controversy, and there is little to write about. There are, of course, contradictions on the right, some may be found in any speech. But bigotry is a wide umbrella and hardly anyone is bothered if the reasons for hate differ--if only the correct people are hated.

Not only is all the controversy on the fight-AIDS side, but also it could hardly be more acrimonious. For the most part, AIDS rhetoric begins with charges of genocide and gets nastier after that. AIDS is the eighth leading cause of death in American. No doubt everyone knows AIDS is the leading cause of death among young gay men. Not everyone knows that in New York and New Jersey it is the leading cause of death among young black women and is second only to homicide as the cause of death of young black men. The rate of AIDS deaths among black men is five times higher than among white men, and among black women, fifteen (yes, fifteen) times higher than among white women. Racial minorities account for more than half of AIDS cases. Little wonder, then, that words like "genocide" come easily to the lips. And by the way, Africa is dying.

The scientific controversies are sharp enough. There is the orthodox view of AIDS: HIV alone causes AIDS, anyone into whose blood a sufficient amount of HIV is introduced will become infected with HIV, and everyone infected with HIV, who doesn't die of something else first, will develop AIDS and die. All the heretics are grouped together under the name "rethinkers" (so named from the title of a book Rethinking AIDS by Robert Root-Bernstein). The rethinkers run the gamut from the purely crazy (AIDS is caused by the orthodox anti-AIDS drug AZT, which fails to explain why there were AIDS cases before people were treated with AZT) to the far-fetched (AIDS is caused by accumulated toxins in the environment) to the really quite sensible (HIV is a necessary condition of AIDS but not sufficient without some yet undiscovered cofactor--certain difficult to isolate mycoplasmas are suspected).

There are several problems with the orthodox view. One is that some people (perhaps ten percent) with HIV have failed to develop AIDS. At first this was easily dismissed because HIV has such a long incubation time and very few people in America were infected before 1980. But with each passing year, the orthodox view that everyone infected with HIV will develop AIDS is harder to sustain. Another problem is that the orthodox view has thus far failed to explain exactly how HIV kills immune system cells. HIV uses immune system cells to reproduce itself and then infects other immune system cells. But why and how, after years of this process, HIV suddenly kills almost all of its hosts at once is not understood.

As the orthodox view commands nearly all of the funding and facilities available for research, all is well if the orthodox view is correct, and of course it would be a waste to spend anything looking for wills-o'-the-wisp like cofactors. The scientific evidence linking HIV and AIDS is so immense that no sane person can doubt the association, but what if--what if the "sole cause" assumption of the orthodox view is not entirely correct? The political reality is that funding for AIDS research is going to be slashed and slashed again. There is a perfectly reasonable fear that any admission of error at this point would be the end of any significant funding. It would be the Challenger disaster of AIDS research, and there is not sufficient pork in AIDS research to allow a recovery such as NASA has made.

In the orthodox view, there are essentially five ways of attacking AIDS: eliminate transmission, find a vaccine of the smallpox type that prevents healthy people from getting the disease, find a vaccine of the rabies type that helps people who are already infected defeat the disease, attack HIV in the body directly, and find better treatments for the opportunistic infections which are what really kill people with AIDS. If the cofactor heresy is correct, there is one additional approach which is to attack the cofactor, whatever it is.

The best solution in the long run, if it is possible, is to find a vaccine of the smallpox type. HIV, like smallpox, is specific to human beings and if the reservoir of HIV in human populations could be eliminated, the disease would be eliminated. The technical problem in this solution is the rapidity with which HIV mutates. Flu vaccines, for example, have to be adjusted season-to-season. They will never eliminate flu although they save many lives in populations that are most likely to succumb to the flu. If an HIV vaccine had to be like a flu vaccine that it would be worth anything is debatable; a constantly adjusted vaccine might catch up with HIV, which does not spread so fast as flu, or it might not.

The political problem is that a smallpox-like vaccine cannot possibly benefit people who are already infected with HIV. As HIV-positive people, including those with AIDS, and their friends and relatives are the squeaky wheels in AIDS funding, it is to be expected that developing a smallpox-like vaccine, which might or might not work, will have a low priority. A change in this situation might occur if uninfected white-bread American began to perceive AIDS as a serious threat--a change we have no sign of.

The prevention of transmission is the only serious effort that is being made to prevent infection. The right wing answer, and still the answer of the leadership of the African-American community, is "Just say 'no.'" Needless to say, it does not work.

On the other hand, safe sex and safer sex programs seem to lose effectiveness eventually. Burkett is at pains to show that oral-genital transmission does occur, an argument that does have another side. The statistics gay AIDS-education projects face make it clear that unprotected anal sex is still the main mode of transmission in the gay male community while cases ascribed to oral-genital contact are very few. Many programs are revamping their messages. The little cards listing relative risks of a menu of possible sexual activities are being dropped in favor of the single, clear-cut message: Use condoms for anal sex every time.

Burkett's subtitle "America in the Age of AIDS" seemed to me a bit ambitious until I read the book. It is about America--America in the '90s, as reflected in the problem of AIDS. In particularly sharp relief are the clear racial divisions that have become especially apparent in so many other areas over the last few months. White liberals are puzzled that clean-needle programs are rejected by the African American community as attempts at genocide. Clean needles would encourage drug use--but is that not the position of Jesse Helms and plenty of other white men who are not noted for having the best interests of African-Americans at heart?

Puzzling. And of course there is the deep suspicion, at least on the part of males, that the purpose of condoms is not to interfere with HIV but to stop African-American sperm. Burkett doesn't get close to that or to the unpleasant truth that insisting on a condom is not a practical option for the black women who are most at risk. Instead Burkett concentrates her fire on the snake oil cures peddled by the Nation of Islam--although these are not especially different from the organic-mega-vitamin snake oil cures favored by some gay men.

Most of the precious little progress made against AIDS has been in drugs designed to interfere with the virus or to treat opportunistic infections. The problem here is that it is politically impossible in America to study AIDS drugs under proper scientific controls. People with AIDS will not enter studies in which they might receive placebos. If a study with a control is organized, the protocol is likely to be cut short at the first sign that the group receiving the drug under test is doing better than the placebo group: it is considered unethical to withhold the drug that seems to be doing well from the placebo group. Naturally this favors drugs that may produce immediate improvement even if in realty no effect or even a detrimental effect occurs in the long run. No protocols are based on outcomes because the outcome for the control group is certain death.

AIDS activists demanded and got fast tracking for AIDS drugs, demanded and got approval for the terminally ill to receive untested or undertested drugs, and demanded and got tolerance for the importation of drugs outside of the normal channels. It is very easy to understand that dying people will accept even the longest odds over no chance at all. But the result is that there is now virtually no way to distinguish drugs that do have some modest positive effects from those that are pure snake oil.

It is insane. Home HIV-test kits could be produced now -- ones that could be read at home, not merely the kind that involve sending samples off. The AIDS-activist position is that this must not be allowed to happen because people cannot be trusted to interpret the results properly or to react to the results appropriately. On the other hand, a person who is HIV positive should be allowed to have whatever drug in his or her judgment might be helpful; the idiot who could not handle a test kit, now knows best what drugs to take.

Thalidomide was the one pelt on the FDA's wall. Through funding cycle after funding cycle avoidance of massive numbers of birth defects by withholding approval of thalidomide was the symbol of the FDA's worth and a bulwark against deregulation. Thalidomide is now available to people with AIDS. The days of the FDA are numbered. AIDS activists and Newt Gingrich will dismantle it together. This strange juxtaposition is common in the problem of AIDS: AIDS activists oppose mandatory prenatal testing for HIV because they oppose all mandatory testing; anti-abortionists oppose it for fear that HIV-positive fetuses would be aborted.

Burkett turns from one segment of society to another and where she doesn't find folly she finds avarice--indeed there is a great deal of money at stake in AIDS. There is an abundance of raw material here for a cynic. She dispatches some complex subjects with a single phrase. For example she mentions the high rate of false positives in AIDS screening tests, as if this were a flaw, and moves on too quickly. In fact, apparently high rates of false positives can be explained. (Where the incidence of HIV is low, say two per thousand, and the false positives are, say, two per thousand, of four positive tests per thousand, two will be false. Citing this as a fifty-percent rate of false positives is alarmism. HIV tests could be adjusted to eliminate false positives, sparing a few people the trauma of a positive result when they are not infected--but only at the cost of more false negatives, which would admit more infected units to the nation's blood supply.) But either Burkett does not know the explanation or she cannot pass up a cheap shot. Burkett is sensational, and I do not mean that as a compliment. Somewhere there must be someone who is sincere and intelligent and trying to combat AIDS without an axe to grind. Burkett has not found that person for she does not believe in motivation without an ulterior motive.

That being said, perhaps no book so valuable as this one could be written by someone less cynical, less sensational, less thick skinned. Being attacked by all sides is highly overrated as an index of journalistic objectivity, but Burkett seems to revel in baiting as many people as possible. Whether it is bravery or foolhardiness I cannot say, but only that no one else is likely to come so near some of these truths again for a very long time. This is an essential book. Buy it. Read it.

Reviewed by Lars Eighner
Source: The Texas Observer, 8 Dec. 1995.