Spotting fake cures for HIV
Some trends to look out for
Published: March 4, 2011, 3:41 p.m., Last updated: May 19, 2011, 8:02 a.m.
The Treatment Action Campaign (TAC) regularly receives queries from people living with HIV questioning whether a particular product cures or treats HIV. Often the enquirer will be anxious about the high cost of the treatment. We also often receive emails and calls from the peddlers of these products, who clearly do not understand what the TAC does.
Like the marketers of Revivo, many quacks use test tube studies to 'prove' that they have discovered a cure for HIV.
We have spotted common trends to many of these claims. As consumers and patients, we should be aware of these trends so that we can identify when we are being deceived and putting our health at risk.
Trend number 1: Test tube evidence
“In 1988, Dr. R.S. Chang from UC Davis and Dr. H.W. Yeung from the Chinese University of Hong Kong published their findings on anti-HIV effects of Chinese herbs. Twelve different species of plants were found to completely stop replication of the virus.” – Revivo website
The studies referred to on the Revivo website, were preclinical in vitro studies. What this means is that they looked at the effect of different substances on HIV in a test tube. However the evidence that they are providing does not reflect how their product will affect HIV in the body. On the contrary many substances that are effective against HIV in the test tube have been ineffective or dangerous in the body.
We can tell little about a substance’s effectiveness as an AIDS medicine from how it reacts in a test tube. It is therefore necessary to carry out clinical trials on humans to determine whether or not a medicine actually works. These tests on humans are called randomised control trials and are strictly regulated to protect the safety and rights of participants.
Like the marketers of Revivo, many quacks use test tube studies to ‘prove’ that they have discovered a cure for HIV.
Trend number 2: Anecdotal evidence / personal testimonies
“I used to feel so weak, cold, anyway i was sick but immediately i started taking revivo, i tell you there is a big difference in my body, i feel so great (healed) like i dont have hiv.” – Revivo website
“28 Years old Nigerian National. Detected as HIV in December 2003.He came in to treatment on 15 January 2006. CD4 was 134 and he had several opportunistic problems including Bowel problems... After 100 days- He was cured fully. No symptoms were left in his body... He sent us $500 more as his gift for saving his life.” – Help Cure website
When there is no scientific evidence from a randomised control trial to back up a claim that a medicine works, quacks will often use anecdotes or personal testimonies to ‘prove’ that their treatment works. Personal stories in place of peer reviewed medical studies are a glaring warning that this product is probably untested.
Personal testimonies are not reliable because they are blurred by confounding factors including the placebo effect, ideology, education, and in the case of HIV often a real fear and misunderstanding of the disease. At the same time the sellers of the product have a profit incentive to bias the personal testimonies that you are exposed to.
Trend number 3: Complex conspiracy theories
“Our major concern is that some media companies are paid by the pharmaceutical industry to interfere with many natural products, or are asked to report adversely on products that are seen to be changing sick people's lives for the better.” – Faith Drops website
Because quacks have not carried out the necessary trials to prove their treatment actually works, requiring them to fall back on unconvincing test tube evidence and shaky personal anecdotes, they sometimes resort to conspiracy theories to explain why this is the case.
Their conspiracy theories must explain why the scientific community has chosen not to recognise their ‘miracle’ cure/ treatment. Because despite the millions of dollars that have been spent and thousands of trials carried out on HIV medicines, their product has not been tested and remains unrecognised.
To do this they must create an enemy that people can relate to such as the pharmaceutical industry, governments or the media.
Trend number 4: False claims of registration
“The traditional nutritional supplement known as Bhejane, which is used as an immune booster by HIV positive people in now registered with the Medicines Control Council (MCC)” – article published in the Business Report
The fourth trend is specific to South Africa. The quote from Business Report comes from an interview with Zeblon Gwala, the producer of Ubhejane. But Ubhejane is not registered. It is alarming that a reputable newspaper incorrectly reported that an unproven, potentially harmful and unregistered substance is in fact registered by our medicines regulatory authority.
Quacks in South Africa often claim that there substances are registered. This confusion stems from a poorly worded notice published in the Government Gazette in 2002 relating to complementary and alternative medicines (CAMS).
In an attempt to audit the extent and nature of CAMS, the MCC issued the 2002 notice asking for information on unregistered medicines in circulation to be submitted to the MCC. However the unintended consequence of this notice (partly due to its poor wording) is that quacks who have submitted their product information to the MCC have subsequently falsely claimed that their product is registered, simply because they receive an acknowledgement of receipt from the MCC. The MCC must rescind this confusing 2002 notice; its only consequences have been to confuse the public and to generate a huge backlog of product claims for the MCC to process.
As quacks cannot back up their claims with good evidence, they rely on confusion to market their products. The medicines legislation in place is there to protect patients. It means that before medicines for treating serious illnesses are brought market they must go through clinical trials and a registration process. People who try to circumvent this legislation put our health and the health of our communities at risk.
Catherine Tomlinson is a researcher and manager at the Treatment Action Campaign.