AIDS : A Search for Options----Underground Cures

Thousands of people infected with the AIDS virus have turned for help to a sprawling underground marketplace trafficking in unproven, sometimes dangerous experimental therapies that have sprung up in the absence of a cure for the deadly disease.

Angered by delays in federal drug testing and made desperate by terminal illness, these AIDS patients have turned their bodies into laboratories for customized testing of everything from unapproved drugs to photographic chemicals to fetal cells and snake venom.

Many of the experimenters also are financial victims, defrauded by a bogus-cures industry estimated by some to be bringing in hundreds of millions of dollars a year. Because of the question of fraud, federal and state regulators have begun turning their attention to products purporting to treat or cure Acquired Immune Deficiency Syndrome.

But patients, and even some doctors, embrace alternative therapies--in part because of the peculiar frustrations of having and treating AIDS. They say some unproven treatments may at least give hope, which they suggest may be of value in itself.

“You know, some of the people just give up and say, ‘I’m tired of fighting,’ ” said Ron Parron, a 29-year-old Long Beach man with AIDS, whose 100-pill-a-day regimen includes drugs, vitamins, minerals, herbs, licorice root and the bark of a Brazilian tree.

“What I’m doing with the different alternative treatments and prescription drugs is keeping me alive until something new and less toxic comes along,” he said. “And then, after that, there’ll be something else to keep me alive six months longer.”

The search for alternative therapies has arisen in the absence of an acceptable treatment for the virus that causes AIDS. Just one drug has federal approval for treatment of AIDS and AIDS-related illnesses--azidothymidine (AZT).

But the side effects of AZT are often intolerable, and it costs each patient about $10,000 a year. Dozens of other experimental AIDS drugs remain mired in the U.S. Food and Drug Administration’s extended and much criticized drug-approval process.

One California-based public interest law firm filed suit in June against the FDA and the National Institutes of Health, accusing them of failing to test quickly and make available drugs that hold promise for treating AIDS.

The suit was filed in federal court by National Gay Rights Advocates of San Francisco and West Hollywood on behalf of the 1.5-million Americans estimated to have been exposed to the AIDS virus. More than 37,000 people have developed the disease and nearly 22,000 have died.

“The process is so slow,” said John James of San Francisco, who publishes a biweekly newsletter with nationwide circulation examining alternative treatments. “. . . A lot of people are not willing to wait until they’re dead. The delays have been just unbelievable.”

The alternative therapies run the gamut--from drugs used widely in foreign countries to Oriental herbs and mushrooms. Dr. Brad Truax, a San Diego physician with a large gay practice, puts the alternatives loosely into three categories:

- Drugs that appear promising but remain unlicensed in the United States. Perhaps the best known is Ribavirin, an anti-viral drug made by ICN Pharmaceuticals of Costa Mesa, approved for use in more than 30 countries and on the market for the last 12 years.

Others are optimistic about a drug called AL 721, developed by cancer researchers in Israel. In recent months, people infected with the AIDS virus have begun mixing it in their homes, using a high-strength lecithin concentrate, water and butter or oil.

- Drugs and chemicals that appear to deserve further study but have some inherent dangers. Truax includes in that category Isoprinosine, an anti-viral drug available in 80 countries, and dinitrochlorobenzene (DNCB), a photographic chemical believed by some to stimulate the immune system but traditionally used only against warts.

- Dozens of purported treatments for which most doctors say there is no scientific evidence of efficacy. They range from mega-vitamins and macrobiotic regimens to injections of hydrogen peroxide and snake venom at clinics across the U.S.-Mexico border.

In Mexico, some of the treatment centers for AIDS are the clinics that used to deal primarily with cancer patients.

One Chula Vista firm, American Biologics, claims to have treated 35 people. The patients, mostly Americans, paid $3,800 each for a 10-day, outpatient program in the firm’s Tijuana facilities.

The treatments, which the firm says it has suspended in order to analyze data, included anti-viral drugs not approved in the United States in combination with injections of megadose vitamins, zinc, selenium, amino acids, Laetrile and “thymus and umbilical cord extract.”

The same facility has also been used to test “a combination of snake venoms” on people infected with the AIDS virus, American Biologics vice president Michael Culbert confirmed. But he said the tests were done by another group, which he declined to name.

Some of the other alternative therapies being tried are garlic pills, herbal treatments, acupuncture, channeling, forms of meditation and high-strength enemas called colonics.

“Practically every piece of snake oil that’s ever been used for anything is being adapted now for AIDS,” complained William Jarvis, president of the National Council Against Health Fraud. “. . . That’s typical of quackery: It always works, for whatever your problem is.”

Last month, the FDA began allowing drug companies to sell experimental drugs that are still in clinical trials, hoping to make more drugs available to people with AIDS and cut demand for unproven treatments.

FDA investigators have recently seized one product in Florida that claimed to treat herpes and AIDS, and forced an alleged anti-AIDS douche fluid off the market. Meanwhile, California regulators say they have been investigating the sale of colostrum, a precursor of mother’s milk being peddled as a way of preventing AIDS. A new AIDS consumer fraud task force begins work this month under the aegis of the state attorney general.

‘People Will Try Anything’

“The problem with AIDS, cancer and other debilitating diseases is that people will try anything,” said Herschel Elkins, head of the attorney general’s consumer fraud section. “And they’ll keep using these bogus cures until they die and can’t complain to anybody.”

There are few reliable estimates of the money being spent.

An estimate of $1 billion for bogus AIDS therapies surfaced recently in congressional hearings on medical fraud. Dr. John Renner, a Kansas City physician and board member of Jarvis’s California-based health fraud group, was then quoted saying the figure might be more.

But this summer, Renner revised his estimate to “hundreds of millions.”

People infected with the AIDS virus turn for help to a growing underground marketplace, an increasingly sophisticated network that parlays information and makes available treatments that cannot be had through conventional doctors.

There are nationwide hot lines equipped with toll-free numbers, computer bulletin boards and listings or research data bases. People have assembled small medical libraries, pored over journals and formed clubs to buy vitamins and herbs in bulk.

In recent months, the recipe for the “home formula” for AL 721 spread through offices of AIDS-support groups nationwide. People trade unlicensed drugs and sell supplies of mushrooms, sometimes with a mark-up, sometimes at cost.

One man, who asked to be identified only by his first name, Steve, learned of a chemical supply house through a contact in Silicon Valley. Over the telephone, he ordered a kilogram of DNCB, “acting as if I was doing it for the third time this week.”

‘Guerrilla Clinics’

Having procured the formula through one of the loose groupings of contacts now called “guerrilla clinics,” he mixed it up in his home, using a gram scale from a store selling drug paraphernalia, a germicidal mask, rubber gloves and protective goggles.

Bruce Loxley, a San Diego store owner, has bought Ribavirin at from a pharmacy in Mexico and DNCB from a doctor in San Francisco. He now has ice trays full of AL 721 in his freezer, cubes of which he heats twice daily in a microwave and mixes with orange juice.

Loxley said he and others have intercepted drug companies’ letters to stockholders to find out when experimental drugs might reach the market. Through a “mole” at the American Medical Assn., he receives its journal every week.

Loxley is also part of a drug company study of the effectiveness of a drug called Imreg. He also takes the drugs Imuthiol and Naltrexone, which stimulates the pituitary gland. “Let’s see: the Imuthiol, Imreg, Naltrexone, AL 721,” he said. “Did I forget anything?”

Others profess to be taking a more “natural” approach.

Timothy Wren, a 37-year-old San Diego man with AIDS, sends his saliva through the mail on a wad of paper to a healer in Boulder, Colo. In return, the healer sends him, for a price, inscrutably labeled bottles of liquids he mixes up daily in glasses of water.

Wren also has a lengthy shopping list that includes such things as barley powder, papaya, bee pollen, ginseng and aloe vera. He takes garlic capsules because an aunt told him her mother-in-law took them and lived to 93: “So that’s a good enough reason for me.”

“I decided I wanted to heal myself and not get into drugs,” said John Hampton, 30, of Los Angeles, a former opera singer who attends holistic healing sessions and shuns red meat. “The people I’ve seen who are doing well are not doing it with drugs.”

‘Passive Patients’

“A lot of people are very much of the belief that what the doctor says, you do,” said Tom Jefferson, who has been buying and using unlicensed drugs from Mexico for four years. “They turn over their medical care completely. They are, I would say, passive.

“I think there’s been a decided change, particularly with people who have been affected by the AIDS virus,” said Jefferson, who runs a San Francisco-based organization on alternatives called Project Inform. “I’ve never felt that MD stood for ‘medal of deity.’ ”

Some experimenters have thrown themselves fervently into the search for a cure: One man called it his quest for the Holy Grail. Loxley characterized his research as a consuming hobby that he looks forward to after work--like a banker’s golf game.

But others bitterly resent their predicament. They feel they have been driven to recklessness for lack of a better choice. They suggest more energy would have gone to finding a cure for AIDS had it not begun as a disease confined largely to the gay community.

“I very much knew that I was breaking the rules,” said Steve, the DNCB user who asked not to be identified by his full name. “I think it’s appalling that people are doing this. The only thing more appalling is that they are having to do it.”

“My question is, would this entire matter be being handled in this way were it cutting a swath across society overall?” he asked. “I think the approach by the medical community, especially as dictated at the federal level, would have been much more responsive.

“The desperation would have been felt far more dearly.”

He said he had received numerous calls for advice on use of DNCB from people already enrolled in controlled drug studies--people who, in their desperation, were willing to risk adulterating the results and perhaps even getting thrown out of the studies.

Doctors, too, find themselves in a perplexing position.

Several physicians who see a lot of AIDS patients said they have attempted to offer guidance to patients who have decided to try unproven therapies, agreeing to monitor their progress if the patients follow their advice and if the treatments appear to be doing no harm.

“I am a believer in the importance of instilling hope,” said Dr. Michael Scolaro, medical director for AIDS research at the Los Angeles Oncologic Institute at St. Vincent Medical Center, who is treating about 300 patients with AIDS or AIDS-Related Complex and conducting an FDA-approved drug study.

“Some will try totally unknown things because they’ve tried all the others and they didn’t work,” said Scolaro, a psychiatrist. “I want to make sure they’re not doing anything that will cause grave complications. But, these are people who are diseased and dying. They’re not going to sit around and wait for some double-blind study. Their attitude is not cavalier. Their attitude is survival, and I absolutely agree with them.”

Scolaro suggests Western medicine will have to adapt to AIDS: “Medicine can no longer be totally traditional,” he said. “One should not knock nutritionists or Norman Cousins or acupuncture or meditation.”

Dr. Keith Vrhel, a San Diego physician with a large gay practice, takes a similar view.

“This tends to be, as a group, a very intelligent, well-read population . . . and I think they know more (about alternatives) than the average physician,” he said. “So I think it’s incumbent upon the physician to listen to their patients, which is what we try to do.”

“In a sense, it may be psychological,” Vrhel said, speaking of the perceived effectiveness of some alternative treatments. “If they have a sense that they’re doing something positive for themselves, they may be less stressed.”

Dramatic Plunges

Vrhel pointed to recent research indicating a link between people’s emotional state and their immune system. Researchers in so-called psycho-neuro-immunology have found dramatic plunges in immune system functioning during periods of stress and bereavement.

Dr. Mervyn Silverman, president of the American Foundation for AIDS Research, said he has found that doctors caring for large numbers of AIDS patients are more tolerant of alternatives than they were with other diseases.

“Doctors feel so frustrated that they don’t have the answers in their hands and don’t have a lot to offer that they say, ‘Go ahead’ with some of these things,” he said. “That doesn’t mean they’re going to be supportive of just anything. . . . But they are supportive of some of the more benign things.”

Support groups face a similar quandary.

“This puts us in a very delicate position,” said Peter McDermott, acting executive director of AIDS Project Los Angeles. “You’d like to tell people about these things. But on the other hand, you don’t want to harm anyone. It is an ethical thing, and we’re trying to be ethical.”

In the last four years, there have been few prosecutions of AIDS quackery cases in California. However, divisions of the Attorney General’s Office and the Department of Health Services have both investigated claims that products and therapies prevent or cure AIDS.

For example, the attorney general’s consumer fraud section is looking into sales of colostrum, the first milk secreted by mammary glands. Elkins, the division head, said small bottles are being sold for up to $100 on the claim that it can prevent AIDS.

In an interview, one Southern California colostrum distributor defended the claim.

“You can take colostrum for the prevention and treatment of AIDS,” said Dave Meyers, president of the Colostrum Co. and Research Society in Universal City. “I take it myself as a preventive measure because of all the AIDS guys I deal with.”

He described his product, which sells for $34 for four ounces, as “the first secretion of mammals, whether they be cows, whales or people. It’s a different chemistry than milk. . . . It defies total laboratory analysis.”

The health department recently stopped a Los Angeles firm from claiming a “food supplement” made from shiitake mushrooms could treat AIDS. But officials say many firms have learned to use euphemisms like “boost” and “nutritional support” to remain within the law.

“Clearly, the underlying message of these products is that they can prevent AIDS, and that’s not true,” said Jim Harbin, a postal inspector in Cerritos who specializes in medical fraud. “But unfortunately, there’s nothing illegal about using suggestive language.”

“I know of nothing that ‘boosts’ the immune system,” insisted Dr. John Renner, a member of the board of the National Council on Health Fraud. “This is just a sales gimmick because the immune system has had so much media coverage in the past four years.”

Renner’s organization, a 2,300-member group of medical skeptics who like to scour the country in search of quack cures, is in the end perhaps the harshest and most vocal critic of the proliferation of alternative therapies for AIDS.

William Jarvis, the president, says experimenters are risking poisoning and perpetuating the public’s blind faith in magic cures. But he admits some people have become almost willing victims out of alienation and despair.

“Serious quackery more often involves people who are true believers rather than con artists,” Jarvis mused. Trying to change an enthusiast’s mind “is a little bit like going to Jonestown and trying to make Presbyterians out of all of them.”

Doug Brown in Orange County contributed to this story.