Grassroots data sheds light on AIDS

Some of the most intriguing data on AIDS is emerging from outside the medical community

By COLMAN JONES

When medical historians look back at the AIDS era, they are likely to point to a curious anomaly -- the growing movement of grass-roots scientists who are surpassing traditional researchers in the race to understand and treat the alarming illness. Like a new cottage industry, this new breed of medical monitors is posing serious challenges to conventional medical wisdom.

This is the personal mandate, for example, of John Scythes, a full- time housing contractor and part- time medical researcher who has made it his business to know as much about T-cells and antibodies as he does abut hammers and nails, ever since he began noticing odd discrepancies in how different groups of HlV-infected people go on to develop AIDS.

"It seems that HIV is harder on those who acquire it sexually than those who acquire it through non-sexual means," Scythes notes. "In contrast, in non-sexually transmitted cases (that is, through blood transfusions) the consequences of HIV exposure are very inconsistent, and vary depending on the group affected. The inconsistencies may ultimately be due to inadequate diagnosis of other sexually transmitted diseases."

The evidence Scythes has uncovered suggests that science may have been on the wrong track altogether in its approach to battling AIDS. If his and others' suspicions are correct, the findings could turn the HIV scientific establishment upside down, causing it to re-evaluate its entire approach to the syndrome.

Literature stacks

Surrounded by tall stacks of medical literature in the living room of his sprawling Parkdale home, Scythes recalls first reading reports in late 1987 of abnormalities in the blood of AIDS patients who also had had a history of syphilis. He couldn't understand why they were losing the antibodies ordinarily generated to fight syphilis.

His curiosily aroused, he's since turned into a medical Sherlock Holmes of sorts and, along with two other investigators, has dug up hundreds of scientific papers from around the world that seem to suggest syphilis plays a greater role in AIDS than previously suspected.

Scythes points to a letter to the editor in the New England Journal of Medicine, among many other sources, that warns that the standard screening test for syphilis, the VDRL, may no longer be accurate in the presence of HIV infection, suggesting there may be many cases of undiagnosed syphilis. While the arrival of penicillin effectively cured cases of readily diagnosed syphilis, Scythes notes the disease can lie dormant in the body for years.

Scythes' suspicions about the role of syphilis in AIDS has caused some leading syphilis experts and local doctors to sit up and take note. Last year, a survey was run on blood samples from people who'd died of AIDS in Ontario, and over two-thirds had had syphilis at some point in their lives.

"All we can do is state the evidence," Scythes cautions. "We cannot say syphilis is AIDS or AIDS is syphilis. What we can state is what is wrong with the blood work, what we are observing and why we think it might be significant."

While Scythes questions the science behind AIDS, other fundamental challenges are being brought to bear on the AIDS establishment in the area of drug testing and approval. These dissenting voices, including those of angry activists and people with AIDS, will be joining an estimated 10,000 scientists, doctors and policy-makers vying for the attention of the world's media at the fifth annual international AIDS conference next week in Montreal.

As well as the hordes of scientists, there will be several hundred people from non-governmental organizations -- mostly AIDS activist groups -- plotting their own response to AIDS, a response that often brings them in conflict with doctors.

"AIDS is the first major disease in quite some years where people are challenging the idea that only the medical practitioner should be making the decisions," says Margaret Duckett, a former advisor on AIDS to the Australian government who's now a visiting scholar at the McGill centre for medicine, ethics and law.

The new AIDS activism is more than a critique of medicine. In many cases it is people outside the medical establishment who are leading the research into causes and treatments.

Duckett says these attempts by community-based research initiatives to cut through bureaucratic red tape are challenging the power relationships between science, medicine, industry and their publics. "In many ways, that's what AIDS is doing -- not necessarily changing the power relations, but causing the power relations to be questioned."

Doctor Michael Hulton, a Toronto anesthetist who treats people with AIDS two days a week, began reading U.S. studies a year ago that showed a drug called pentamidine, when inhaled as a mist, could prevent the leading killer in people with AIDS, a pneumonia called pneumocystis. He requested special permission from the federal government's health protection branch to use it for his patients. When Ottawa refused, Hulton, along with a handful of other local GPs, went outside the system and took the unorthodox step of arranging supplies from Buffalo.

The actions of Hulton and his colleagues sparked a major debate aver whether people with potentially terminal illnesses should have access to experimental therapies that haven't been fully tested. Pressure from primary-care physicians and activist groups like Toronto's AIDS Action Now prompted the federal government in January to loosen the restrictions on the release of unapproved drugs.

People with AIDS saw the increased availability of drugs as a victory. But scientific approaches die hard, and there are researchers who warn that concessions such as these will make it impossible to conduct the necessary research to establish the effectiveness of new treatments.

Experimental therapies

"In order to clarity the effects of the drugs, you have to go by the normal route, which is a double blind study," insists doctor Michel Chretien, the scientific director at Montreal's Clinical Research Institute. "As a scientist, you have to go by the ways that have been proved are the best to have appropriate and trustable data. Otherwise you will never have any answers to any diseases."

"The science of pharmacology has certain ground rules, developed through years of' experience," says Chretien, "that you have to follow to have the best answers."

Bernard Dickens is no stranger to this controversy. Dickens, a U of T law professor, chaired a Medical Research Council working group drafting new guidelines for medical research involving human subjects.

"In the past," Dickens says, "departure from the orthodox has been legally and ethically suspect, and there are those who say the integrity of science must not be changed by the panic and desperation to come up with a cure for AlDS. You've got others who say since nothing works the only hope for the future is something that hasn't been tried. There's a very real debate in the ethical literature on the issue."

One of the latest people outside the medical establishment to enter that debate is John S. James, a journalist who publishes AIDS Treatment News, a newsletter on experimental therapies which many AIDS doctors consult in addition to the regular medical journals. In a recent article entitled The Drug Trials Debacle And What To Do About It, James diverges from the usual news items about the latest treatments to offer his own thoughts about the current dilemma around AIDS drug research and approval

James points to the numerous delays in getting traditional clinical trials set up, in part due to marketing and licensing requirements designed to protect patients from dangerous and useless therapies. Many studies involve the use of placebos (inert preparations given to half the subjects), which makes it difficult to recruit patients and causes widespread cheating by patients taking other drugs outside of the trials.

In a telephone interview from San Francisco, James is quick to add, "The problems don't just apply to AIDS, but to any life-threatening illnesses. The research system has become much too slow."

In his article, he proposes an alternate way of doing research that might bridge the current gap between the needs of science and the needs of people clamouring for potentially promising treatments, treatments that could delay, or even prevent, the onset of fatal illnesses.

He suggests setting up what are called "prospective monitoring studies," which would merely monitor the progress of patients taking different therapies or combinations of therapies, in a uniform, scientific manner. While not designed to give absolute proof of efficacy, this type of project would at least indicate short-term trends that would assist people with AIDS and their physicians in making treatment decisions in the present.

"People have to evaluate information intelligently", says James. "If the quality of the data is such that physicians will accept it as valid, then the research has been successful. Some physicians are not going to look at anything except for what's standard, but there are those who are very open to looking at new treatments. But they've got to see data that makes sense."

The type of research James is proposing also differs from conventional clinical trials in that it is community-based, run out of the offices of private physicians, and organized primarily to give immediate information to patients and their physicians, as opposed to fulfilling the requirements of regulatory agencies and pharmaceutical companies. Interestingly, the U.S. Food and Drug Administration's recent move to make aerosol pentamidine more widely accessible was based on research data gathered entirely by a community-based organization.

While conventional clinical trials are valid scientific tools to obtain information, community-based trials can offer innovative approaches which may be very helpful, says Montreal immunologist Norbert Gilmore.

"The medical mind has been trained to evaluate things by a certain paradigm," says Gilmore, who recently resigned his post as chair of the national advisory committee on AIDS, protesting interference from federal bureaucrats. "This disease is showing us an awful lot about how we might do this in a quicker way."

NOW JUNE 1-7, 1989

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