AIDS 'cures': Snake oil or salvation?
Log on to the Internet, call up a search engine and type in AIDS+cure. Or pick up some alternative newspapers or magazines.
A few clicks of your mouse or a close reading of an occasional advertisement directs you to companies making claims like:
Are these claims for snake oil or salvation? Are there "natural" agents or devices which are non-toxic alternatives to conventional antiviral therapy for HIV disease?
The California AIDS Fraud Task Force (CAFTF), established in 1985 as the nation's first AIDS fraud task force, helps answer those questions.
Mission to empower, reduce risk
CAFTF is a voluntary, collaborative, statewide network of diverse individuals from the HIV community and representatives of community-based organizations and government agencies. The task force has a dual mission: to empower people with HIV to act on their own behalf in matters of health care, and to reduce the risk of harm caused by the lack of adequate, accurate information, and by misinformation.
"HIV/AIDS health fraud is any false, misleading or unproven claim about the prevention, treatment or cure of HIV/AIDS," says Marcy Fenton, M.S., R.D., CAFTF member and AIDS Project Los Angeles' nutrition advocate.
HIV/AIDS health fraud is dangerous for several reasons. "Just because a product is advertised on-line or in a newspaper doesn't mean its safety and efficacy has been tested adequately," says Fenton. "Some products are dangerous, sometimes nothing more than household cleaners mixed together."
Expense can be another factor. "Fraudulent products don't work," says Fenton. "They're not covered by insurance and simply are a waste of money."
Not all are fraudulent
Not all therapies complementing drugs that are approved by the Food and Drug Administration are fraudulent.
"Many products and treatments used by people with HIV aren't regulated by the FDA and are important complements to licensed drugs," says Ruben Gamundi, program manager of APLA's Client Health Education and Advocacy Unit. "Herbs, acupuncture and elements of traditional Chinese medicine are important components of anti-HIV therapy for many people. People with HIV should always discuss all the therapies they use with all of their health care providers."
Products or treatments with suspicious claims should be investigated thoroughly, Gamundi warns.
FDA approval required
According to federal law, a manufacturer cannot make therapeutic claims about a product without Food and Drug Administration (FDA) approval.
Products or treatments may be regulated by the FDA or state authorities, depending on where they are produced or made available, among other factors. While CAFTF does not assess the efficacy of a product or treatment, it does act as an information loop, giving consumers information about questionable products and alerting regulatory agencies to the advent of new, potentially fraudulent products.
"AIDS fraud is false advertising. We're here to help educate consumers," says Trisha Johnson, task force chair. Consumers who call the information line number, (800) 459-4503, with questions about a product are given any available information about it. "We also steer callers back to their health-care provider and other avenues of information like the product's manufacturer, AIDS-service organizations, pharmacists, nutritionists and health educators to get objective feedback," says CAFTF member Rosario Vior.
The task force also monitors trends in the availability and nature of potentially fraudulent products and treatments. "Information gleaned from task force members with close ties to the community and from calls to the information line is shared with other members and with the task forces of other states," says task force member Ed Whitford. "This assists local communities, states and FDA health fraud coordinators identify trends."
This information can also lead the appropriate regulatory agency to investigate a product or treatment and its claims.
Some cases prosecuted
What's the appeal of products that seem too good to be true? "The hopelessness that some people living with HIV can have," says San Diego task force member John Rasmussen. For example, the manufacturers of Immunostim, a bathtub brew of household cleaners used as an IV treatment for cancer and AIDS, were convicted of fraudulent claims because of consumer and care-giver complaints.
The effects of successful, aggressive combination therapy on AIDS fraud are not completely clear. "There's been a change from the days when there was no hope for an effective therapy or cure for HIV to the position where people see some benefits in therapy," says Whitford. "We're not seeing as many far-out schemes. It's more difficult for promoters to make headway with their claims when there are more efficacious treatments available."
Some are especially vulnerable
Distrust of government in some communities can predispose them to the claims of fraudulent schemes. Economically challenged individuals who don't have access to FDA-approved drugs may be able to afford treatments that promise equally successful results at a fraction of the cost. Some members worry that recent news that HIV can't be eradicated after several years of treatment may increase AIDS fraud.
"Some dietary supplements don't make the claim they'll cure AIDS but promise to embellish health status or boost the immune system," Whitford warns. "They may do this with no proof. Or, they may boost the immune system and promote activated immune cells to increase HIV production."
"Californians love products described as 'natural,' 'organic' or 'herbal.' People think if it's natural it can't hurt me. Sometimes it isn't clear what dosage is correct or what the long-term effects might be."
According to Rosario, health fraud transcends economic and social status.
"Fraud victims can be very embarrassed and reluctant to discuss their experiences," she says. "CAFTF exists as a safe place where people can tell their story. We hope that people who have suffered a loss of health or financial resources because of fraud will share their experiences with us so that others can learn from them."
If you encounter suspicious products or treatments for HIV or AIDS, contact the California AIDS Fraud Task Force for an opinion. You may protect your health and your pocketbook.
The California AIDS Hotline: (800) 367-2437) provides similar assistance in English, Spanish and Tagalog.
This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.