There’s so much information out there about HIV/AIDS, espcially on the internet. How do you tell the good from the bad?
If you’ve got an email account, you might have received an intriguing unsolicited advertising message recently, as I did.
I don’t normally pay much attention to email spam — I’m not really interested in penis enlargement, black market Viagra or naughty pictures involving barnyard animals — but this one caught my eye.
“This is not just another SPAM email,” the message said. And indeed it was not, because this spammer wasn’t offering to titillate, amplify or engorge — he (or she) was offering to cure me of HIV/AIDS.
“They found it!” the message said. “THE ANTIDOTE. The ALTERNATIVE REMEDY That kills ALL known deadly Viruses & Bacteria in the body and can help people with Influenza, SARS, Cancer, HIV, etc.”
Obviously this was something that PL needed to investigate, so I went to the web site mentioned in the article — www.biologicalmiracle.com — to see what the fuss was about.
The product on offer, ‘The ANTIDOTE’ (it’s always written in capital letters for some reason), is described as “a unique anti-microbial peptide” which “kills all known deadly viruses and bacteria in the body.” The ANTIDOTE, I was breathlessly informed, is an extract from the blood of Australian saltwater crocodiles, and can be had for the bargain basement price of US$49.99 per 5ml bottle. That’s about A$66 for one teaspoon of magic croc blood extract.
Could it be possible that a breakthrough HIV treatment was being advertised via email, or was I being played for a patsy by some fly-by-night internet con artist?
Never smile at a crocodile
Ever since the internet came into widespread use about ten years ago, it has become a magnet for unscrupulous marketers of all kinds. Like the snake oil salesmen who once travelled the wild west, they prey on the desperation of people in desperate situations, especially those living with serious and incurable diseases like HIV/AIDS and cancer.
On the world wide web, of course, the snake oil merchants have new technology at their disposal which can make their bogus claims look credible. The skills required to build a professional, authoritative-looking website are not beyond the average teenager, and the net’s global reach mean that spam messages can be sent to millions of people in seconds for virtually no cost.
If you have a product to sell, and no scruples to prevent you selling it, the internet is a hustler’s paradise.
At the same time, the internet is an invaluable source of useful, verified information about just about every subject under the sun. And because its development has happened at pretty much the same time as the HIV/AIDS epidemic, there are excellent sources of useful HIV information on the net.
So how do we sort the wheat from the chaff? Are there ways to tell the good oil from the snake? Here are a few pointers.
Common sense
The first, and perhaps most useful, suggestion, is to keep your wits about you.
HIV/AIDS is the single greatest health challenge of our age, and more money and effort — from corporations, governments, universities and charities — is being expended on HIV-related medical research than ever before. So the odds that a shadowy shelf company operating out of a post office box in the Cayman Islands will discover a breakthrough treatment (or The Cure) are approximately zero.
That’s common sense — but even for sensible people like you and me, sometimes our common sense evades us. People who are failing on treatment, running out of options, or scared of starting HIV treatment for fear of side effects can feel desperate for help and that desperation is like gold to fraudsters.
Also bear in mind that not everyone is obviously selling something. There are many web pages and books which make compelling claims about the ‘true’ causes of AIDS, the sinister origins of HIV, or the alleged global conspiracy which lies behind the AIDS epidemic. Fortunately, like the claims of the snake oil merchants, those claims can be questioned, tested and scrutinised.
Evidence, or the lack of it
Just like legitimate scientists, these fraudsters are usually quick to provide evidence to back up their claims. Often, taking a critical look at the kinds of evidence that is provided can give a clue about the genuineness of the claims made.
One of the most common types of non-evidence to look out for is anecdotal information such as personal stories, testimonials, and case reports. Whether the anecdotes are made up or even if they are genuine, this kind of claim needs to be looked at very suspiciously.
Firstly, these kinds of claim are usually difficult to verify. They may be attributed to people by name (often just a first name) but there is no way of checking to see whether the testimonials are genuine or just made up. For example, the biologicalmiracle.com website includes a slew of testimonials from people claiming relief from all manner of ailments, including HIV/AIDS, but the testimonials are attributed to people by their first name and general location. There’s no way I can find out whether “Sarah, Virginia USA” is a real person or not.
Secondly, even if these claims are genuine and could be verified, individual case reports are not proof that a given treatment works. In placebo-controlled clinical trials, there are almost always a number of people who seem to improve or get better even though they were taking nothing more than a sugar pill. Sometimes this is due to chance, and sometimes it is due to the ‘placebo effect’ in which a person’s expectation of treatment success can actually bring about an improvement in their condition.
A second type of ‘evidence’ to be suspicious about is dodgy clinical trial data. Properly run, legitimate clinical trials are the backbone of AIDS research, and snake oil salesmen will sometimes try to use dodgy (or non-existent) trials to support their claims.
Signs that a clinical trial is genuine include the involvement of a legitimate research organisation (typically associated with a university), the support of government and non-government organisations in the country or countries where the trial is conducted (especially the involvement of national PLWHA organisations), and the reporting of the trial results in respected peer-reviewed journals.
The last of these is by far the most important — even in the mainstream scientific community, clinical trial reports are often refused publication in these journals because the rigorous peer review process finds fault with the way the trial was run or the conclusions drawn from the results. A sure sign that you’re being sold snake oil is if the clinical trial results were never published or are claimed to have been published in an obscure or made-up journal.
One way to check these claims is to go to the Medline database at www.ncbi.nlm.nih.gov/pubmed and doing a search. This database has abstracts (short summaries) of over 15 million published articles in legitimate scholarly journals going back to the 1950s.
Sometimes snake oil sellers will claim their work was carried out by important-sounding, but non-existent, research organisations, foundations, or universities. Other times the ‘research’ will not be real research at all: the ANTIDOTE website says its “initial research” was carried out several years ago by the BBC.”
Hang on a minute, you’re probably saying, since when is the British Broadcasting Corporation a biomedical research body? Of course it’s not. But the link to their website does go to a story about a BBC science reporter who wondered why crocodiles don’t become infected when they are wounded by other crocs, and subsequently discovered that crocs do indeed have a peptide (a string of amino acids) in their blood which helps them fight off infection.
That part of the story checks out, but it takes a substantial leap of faith to pin your future health on a product supported by this type of ‘research’.
Don’t get taken in by his welcome grin
Finally, here’s a quick checklist of things to look for when scrutinising internet-based information
- Secrecy: Legitimate manufacturers protect their products by using patents, not by refusing to tell anyone what’s in them. Treat claims of ‘top-secret formulas’ with suspicion.
- Bagging big pharma: Watch out for claims like “this is the secret discovery the big drug companies don’t want you to see!” If the product really worked, would any self-respecting pharmaceutical company ignore the chance to profit from it?
- Cure-alls: Dodgy therapies like The ANTIDOTE often claim to cure many different and unrelated diseases (such as AIDS and cancer). This isn’t because the product is a panacea, it’s an attempt to maximise the potential market.
- Non-specialists: Watch out for medically qualified, but non-HIV-specialist, endorsement. The fact that someone has a medical degree (or is an expert in a non-medical area) doesn’t make them an AIDS expert.
- High prices and limited offers: Just like the late-night infomercials which offer an extra set of steak knives if you call within five minutes, flimflammers will often try to get you to put your money down before you have time to think.
- All-natural formula: Fraudsters will often claim their ‘secret formula’ includes lots of extra ‘all-natural’ herbs and vitamins.
- No side effects! Ever! Another common claim. Virtually everything produces side effects of some kind or another in at least some people.
- Undated material: Watch out for research reports and citations with no date. HIV medicine has advanced considerably in recent years; quoting from 15-year-old journal articles, even if they’re legitimate, is an easy trick.
- Pass it along: You’re not alone in this, and if you come across something that seems compelling but you’re not sure what to make of it, ask your treatments officer, doctor, complementary therapist, AIDS Council or PLWHA organisation what they think.
