The Quackhunt of '87: Legal Attack on Alternative Treatments?

On May 21, California State Attorney General John Van de Kamp announced the creation of a task force to investigate AIDS consumer fraud and quackery -- the first such move in any state. This and other such attention might or might not cause problems for legitimate alternative treatments.

With so much unknown about AIDS, and with existing treatments so unsatisfactory, it will be hard to find consensus
on how to distinguish legitimate unproven and unconventional treatment attempts from unconscionable schemes to exploit
peoples' desperation. The danger, of course, is that everything not already approved by the by the U.S. Food and Drug Administration (FDA) could be automatically classed as
fraud or quackery, simply because the distinction of whether or not a treatment is approved provides the only dividing line which is easy for officials to use.

A war against treatment alternatives would greatly reduce the options available to persons with AIDS, ARC, or a positive antibody status. Only AZT has been approved for direct treatment of AIDS and ARC, and no other official approvals are near. Yet most people cannot use AZT, either because they cannot tolerate the side effects, do not benefit from the drug, do not qualify for it under current rules, or cannot pay the extraordinarily high price for it. Without the alternatives, these people are left with nothing at all except management of opportunistic illnesses as they occur.

The new FDA rules to liberalize access to experimental treatments should give some patients new options. But these
rules apply -- as they must -- only to treatments already well advanced in official trials. Only drugs with strong commercial and institutional support get that far. Usually these are high-tech, biotechnology products. Such glamor drugs carry inherent risks because of their novelty, and usually they need years of development and testing before they become ready for widespread use. Meanwhile safe and rational low-tech options such as AL 721 and DNCB suffer official neglect and even active roadblocks. Such promising treatments, barred from official consideration by commercial or political constraints, are the ones which alternative treatments movements are making available. The new FDA rules will do little nothing to improve access to these drugs.

An official myth holds that government and corporate scientists have pulled out all stops and are leaving no stone
unturned in attempts to find a cure. In fact, with the exception of AZT which has serious drawbacks, almost all the research attention has gone into options which could not possibly be widely available for years. Appalling scandals not
yet known to the public, such as the mishandling of AL 721, DNCB, and lentinan, will show that the Federal government as well as other U.S. institutions have never made a serious commitment to save the lives of those now ill. Now the
grassroots efforts to do what the institutions have repeatedly refused to do may face political and legal attack.


A New AIDS Hysteria?

In the last two months at least a dozen mainstream journalists have called this writer; in the preceding year not
a single one had called. Most of the callers were looking for frauds. They were convinced, often without having seen a shred of evidence, that the AIDS world teemed with quacks and frauds. And they were determined to find them.

"I know they're out there," was one typical comment. Another journalist asked for a "small scam" -- meaning a handy
villain to be pilloried, unconnected with a major institution with the means to fight back. Few of the callers had any
interest in the public policy failures which had prevented effective AIDS treatment research and development -- and prohibited AIDS service organizations which receive public funding from providing the oversight or advocacy to help
correct the situation.

The quackhunt now being prepared provides an easy diversion for the public's heartfelt desire to do something
about AIDS. It is politically safe, as liberals can accept it to keep persons with AIDS from getting exploited, and
conservatives to keep them from getting treatment. It continues the long-standing approach of writing off persons
with AIDS as already all but dead -- to be helped through the dying process without a finger lifted in any serious effort to
save their lives. It updates this approach for a time when the grassroots treatment movements have grown too large and visible to be ignored any longer.


What Can We Do?

The best way to protect access to alternative treatments is to keep our own house in order.

The AIDS community can extend and develop its own consensus on what is and is not legitimate. We have
considerable consensus already:

* We insist on openness and disclosure. Secret treatments are not acceptable. People must know what they are using and why, and be able to seek independent advice.

Note that the many quacks who rely on secrecy are automatically excluded from our community.

* Misleading claims are not tolerated. It is not legitimate to promise cures, to make other false or unproved
claims, or to pretend to certainty when it doesn't exist.

Anecdotal evidence, however, is legitimate. It is better to present the best information we have, honestly labeled as
uncertain, than to give up and do nothing until institutional research finds a definitive answer, several years later.

* We are moving toward a consensus that it is not legitimate for proponents of one treatment to urge users to
drop out of others.

Unfortunately the drug companies have set a bad example by insisting that participants in clinical trials drop almost all treatments except theirs. They abuse their subjects, and distort their data by insisting on testing in isolation drugs
which everyone agrees will be used in combination.

Besides developing consensus, a second way to guard against quacks and quackhunters alike is to maintain open
communication.

San Francisco at least has had many treatment alternatives, but remarkable little AIDS fraud, in the sense of
unsupported treatments deceptively promoted to make money. Much more would have been expected in so serious an epidemic. The extensive community networking and legitimate information channels have made it difficult for quacks to operate.

It is particularly important that patients can discuss alternative treatments intelligently with their physicians. Then those considering a questionable treatment can ask their doctor's help in checking it out. But physicians who automatically reject everything not already approved by the FDA cannot help their patients with such decisions and are unlikely
to be asked.

A legal crackdown on alternatives would impede the very communication which discourages fraud. Not everyone will just give up and die; many will seek help secretly if they must. The growing quackhunt could ironically increase AIDS fraud by destroying the healthy openness and communication which has kept it in check.

The key to protecting this openness is consensus and a sense of legitimacy among persons with AIDS and ARC. Any political and legal attack must purport to be acting in the interest of the persons who are ill. It cannot succeed against a strong and articulate community consensus.