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

August 16, 1987|JANNY SCOTT and LYNN SIMROSS | Times Staff Writers

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.

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