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Evaluating Alternative Treatments

February 1993

Many individuals with HIV use some form of alternative medicine. It is extremely difficult to sift through all the various treatment alternatives available and evaluate which ones are truly valid and which are outright fraud. The following is a list of guidelines to help you in this process. It is important to look at a number of these factors to get an overall picture.

Look for Studies Published in Peer-Reviewed Medical Journals

It is a myth that studies of alternative medicine are not published in reputable medical journals. If the studies are creditable, they are published. STEP has on file published reports of studies on NAC, hypericin, glycerrhizin sulfate (licorice root), co-enzyme Q-10, and bitter melon, to name a few. SERENA YOU WILL BE ABLE TO DO LINKS HERE FOR BITTER MELON AND EVENTUALLY ALL OF THEM Because alternative medicines take a long time to reach the clinical trial stage, many of the published reports are on in vitro studies, meaning the compound was tested in a laboratory setting, not in people. Although in vitro studies are limited in their applicability, since only a small number of them will have the same effects in people, they still are of value. If a compound works against HIV in vitro, there is reasonable scientific data to suggest its possible benefit in humans. In vitro studies are not extremely costly, nor do they take a great deal of time, so there is no legitimate reason not to perform them. Do not blindly accept the promoters statements that studies have been published in reputable journals, demand copies of those studies. Just because studies have been published does not mean the results were favorable. For example both phase I and II studies have been published on ozone therapy, however the results did not show any benefits to the individuals.

Be Wary of Anecdotal Reports

Personal testimonies of benefits are often the only "evidence" promoters produce to substantiate their claims. Take, for example, the following scenario into consideration. A man we'll call Bob works full-time in a stressful job he dislikes. In addition, he has recently ended a long-term relationship and had a horrible fight with his mother. He has symptoms of fatigue, loss of appetite, dry skin, and depression. He reads an ad in the local community paper about a miracle cure in the Bahamas for $5,000. He decides to go and takes a leave of absence from his job. For three weeks Bob goes to an obscure clinic for an hour each day to receive his "miracle infusion" and does nothing else but relax on the beach watching sailboats. Well after about a week, Bob miraculously begins to feel more energetic, his appetite returns, and he feels great. At the end of the treatment, he discovers his CD4 count has doubled. Bob feels eternally grateful to the "doctor" and writes a statement praising this miracle treatment, which is then given to other prospective clients. However, other prospective clients don't receive a copy of the letter Bob wrote three months later demanding a refund because his symptoms have returned and his CD4 count has dropped after he returned to his job and other stressors in his life.

Numerous clinical trials have proven the "placebo effect" is a very real phenomenon. Individuals who believe they are receiving a toxic drug in a trial often have side effects. For example, in the early AZT trials, many individuals receiving a placebo had symptoms of nausea and vomiting as well as signs of anemia. The reverse is also true: individuals who believe they are receiving a drug that will benefit them have also shown temporary symptomatic improvements as well as increases in CD4 counts. The mind is a very powerful tool. Unfortunately, the "placebo effect" is only temporary.

Consult With Many Unbiased Sources Before Making a Decision

The person selling the treatment is not an objective source of information because they stand to gain from your decision. Talk with informed individuals who are unbiased such as a local treatment information organization (such as STEP), or the California AIDS Fraud task force (415-556-2263). Often individuals hear about new treatments from their friends who are trying them. Although there is usually no doubt that friends are truly sincere in their beliefs, they may be experiencing a "placebo effect" and can not really be considered unbiased sources.

Demand To Know What the Treatment Actually Is

Many of the fraudulent treatments in the community have "secret" compounds. They claim they can't reveal what is in them because the medical establishment will steal it. This is an unfounded excuse. Patents are easy to obtain and don't require a lot of time or money. It's your body and you have the right to know what you are going to put in it. There are actually "secret" compounds out there that are no more than mothballs and water or kreasote (the black tar residue on railroad pilings).

Question the Price of the Treatment

It is no secret that many of the standard drugs used for treating HIV and related opportunistic infections are overpriced. Drug companies often cite the high cost of drug development and research as the reason for the high price. Although this excuse is not 100% acceptable, there is some validity to it. What excuse does the promoter of a $3,000 cure give you? Chances are the compound has not been through extensive, costly development or in vitro studies.

If the Treatment Is Being Touted As a "Cure," Demand Proof

A testimonial from Bob stating he went from HIV positive to HIV negative is not proof. Insist on copies of Bob's Elisa and Western Blot tests both before and after the treatment, then take these copies to your physician for verification.

If It Is Necessary to Travel to a Foreign County for the Treatment, Question Why

Travel to other countries can, in and of itself, be bad for your health for numerous reasons. You will be exposed to bacteria and other microorganisms that your body is not accustomed to, breathing recycled air during a long airplane ride can lead to respiratory infections, and the medical care in the foreign country may be substandard. If the treatment is legitimate, there is no reason you should not be able to obtain it here. Treatments which appear promising and are approved in other countries can be imported either on an individual basis or through a buyer's club. Also, if the supposed "cure" really worked, that clinic would most likely be filled with local people and have long waiting lists.

Interview the Promoter

What degrees do they have and from where? If they claim to have a PhD in microbiology from Harvard, check it out. A few dollars in phone calls and postage could save you thousands. Where did they work before they developed this treatment? What papers have they published? What achievement in medical research have they made? Is the promoter willing to answer all your questions, or does he skirt around them? Ask for a copy of their curriculum vitae (resume) which any reputable practitioner should have.

Be Wary of Treatments Which Claim to Cure Multiple Illnesses

A standard sign of fraud is the claim that a treatment cures both cancer and AIDS. Aids and cancer are totally different diseases and it is unrealistically optimistic to believe one drug could "cure" both diseases. Many of the charlatans selling cures for AIDS were in business long before the AIDS pandemic, selling their same scams to people with cancer.

Read Any Literature You Are Given Carefully

Often the literature will contain only unsubstantiated claims of miraculous effects. Occasionally the literature will contain limited laboratory data of a few patients such as CD4 counts for patient #6, patient #32, and patient #73. What happened to the other 70 patients? If you want assistance in analyzing the literature, take it to your physician or a local treatment related AIDS organization. Remember, anybody can write anything they want to, it doesn't mean it is the truth.

If You Must Discontinue Other Medical Treatment for this Treatment to be Effective, Demand to Know Why

Many drugs interact adversely with some other drugs, but very few (if any) compounds adversely interact with all drugs. Insist on reviewing drug interaction studies. For a researcher to say that a compound adversely interacts with another drug, it must have been studied, at least in vitro if not in humans. For example, some drugs have the same side effects and should not be taken together. Other drugs may compete for the same receptor sites, such as AZT and d4T, thereby decreasing the effects of both drugs. A broad claim such as "other chemicals will interfere with the natural balance of compound X," is not good enough. Discontinuing some medical therapies, such as PCP prophylaxis, can be extremely risky and should not be done without substantial proof that it is absolutely necessary.

Look Closely At Studies Performed in Third World Countries

Third world countries usually do not have the financial resources nor reliable, standardized laboratory equipment necessary to conduct a valid trial. A CD4 count done in Africa would probably not yield the same results as one done in the United States, even if the same blood sample were used. The usual scenario is a wealthy entrepreneur from a developed country will set up trials in an underdeveloped country because the standards are a lot less rigid and it is easier to make false claims. Usually the studies are no more than uncontrolled treatment observations. In addition, the very presence of a clinical trial in individuals with substandard living situations, and following these people with regular medical checkups, seeing that they have adequate nutrition, etc., may in itself cause the disappearance of signs and symptoms but have nothing to do with the effect of a drug.

You are ultimately responsible for what treatments you choose to use and this responsibility should not be taken lightly. Arm yourself with knowledge, patience, and never abandon your common sense. There are a lot of people out there who care a lot less about your health than they do their pocketbooks, and it is up to you to put them out of business by being a cautious, informed consumer.




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