Sunday Star*Times (New Zealand), Mar. 9, 2003
A sugar pill promoted as a treatment for Aids, cystic fibrosis and Down’s Syndrome is being peddled to vulnerable Kiwi families.
Doctors and support groups are alarmed that sufferers are being given false hopes by the distributors of Ambrotose, a product with no scientific evidence supporting its claims.
Although no claims are made on the product labels, the New Zealand patent, which is used by distributors to entice customers, claims the product can offer “co-ordination, learning, memory and appearance improvements” for people with Down’s Syndrome; “elimination of symptoms; restored immune function” for people with Aids; and correction of altered chromosomes for sufferers of leukemia. It also says it helps manage other diseases including diabetes and cancer.
But US company Mannatech, which created the product, has distanced itself from local distributors, known as “independent associates”, saying it does not make therapeutic claims and would take disciplinary action against anyone who did so. About 2000 associates work in New Zealand.
“In New Zealand no therapeutic claims can be made about the products. I’m not aware that that is happening. We do not endorse or condone the activities to make cure or disease claims about our products,” said Mannatech’s vice president of marketing Brad Wayment.
He said the patent was not intended to be used to sell the product.
The product is made up of eight sugars, two of which are found in milk. It also contains aloe vera and vegetable extracts.
Some families are paying about $300 a month for products that medical experts say are “probably worthless”.
Distributors also give testimonials about marked improvements in people with cystic fibrosis and say it can treat and manage the disease. For the New Zealand Down Syndrome Association, they produced material showing before and after shots of an American girl with Down’s Syndrome who they say had dramatic appearance improvements.
But Auckland University clinical geneticist Ingrid Winship said the girl “just looks older”.
“Her baby teeth are gone, she’s lost weight and her face looks more mature but the features of Down’s Syndrome are no less pronounced. From the pictures, I would not say her Down’s Syndrome has disappeared.”
She said genetic changes would not be remedied by Ambrotose.
“It is not appropriate to make extravagant claims for a product that may do no good. Anecdotal evidence of people who have noticed some sort of improvement does not constitute scientific evidence.”
The Sunday Star-Times understands the distributors have no formal qualifications or medical knowledge. One distributor said Mannatech Australia, which supplied the product, encouraged them to not have any medical knowledge, despite selling the supplements to people who may be taking other medicine and suggesting possible dosages for people with complex diseases such as cystic fibrosis.
Customers must become associates or members to receive the products. They pay an initial $A195 for an introduction pack of 60 Ambrotose tablets.
Mannatech was investigated last year by the Commerce Commission for alleged pyramid marketing but no action was taken. This year the commission received two complaints but spokeswoman Jackie Maitland said the commission felt the Medicines Act was more appropriate to deal with the issue.
Peter Pratt, team leader of the Health Ministry’s medicines safety authority Medsafe, said it was working with the company to ensure distributors complied with the Medicines Act.
Aids foundation executive director Kevin Hague was angry about what he believed was the “cynical exploitation of the desperate and vulnerable”.
The foundation was approached last year to endorse the product and was asked to find three people with HIV to take part in a “clinical trial”.
The foundation refused. “There is no credible evidence to support claims of effectiveness,” said Hague. “Having looked at the websites associated with (Mannatech) they bear all the hallmarks of scientific fraud.”
Senior pediatrician Alison Wesley, a cystic fibrosis expert at Auckland’s Starship Hospital, was outraged that desperate patients were being preyed on.
“The people who have become interested are desperate to do the best for their sick children. It is probably worthless. It’s not about to cure cystic fibrosis.”
Cystic Fibrosis Association of New Zealand general manager Bruce Dunstan was horrified by the claims.
“If the information we’ve been given is true, then it is a complete waste of money and we would want to warn our families about spending money on a completely unproven product.”
Auckland Cystic Fibrosis Association spokeswoman Sally Carron dubbed it a “nonsense product” for its claims it could treat cystic fibrosis.
She was approached recently by an associate who encouraged her to promote the products and gave “miracle stories” about three children with the disease who had become “symptom free” and “not on any drugs”.
Auckland distributor Shareen Teo had heard some associates had made more than $40,000 in six months.
“I have to believe in it because I have to sell it. I believe in it.”