We all like to see worthwhile charities get funding so they can do their work and assist those who need help. However there is an old adage that he who pays the piper calls the tune. There is an ever-increasing number of health and medical support groups and they have not escaped the attention of the pharmaceutical industry.
In 2008/09 Pfizer Australia gave over $1.7 million to 18 patient and doctor groups whilst Glaxo Smith-Kline put up a more modest $1.4 million. Some groups like the Australian Lung Foundation and Impotence Australia were set up with grants from Pfizer.
Times are tough and so many groups may well look to industry to supplement funding from private donations or government grants. There is no suggestion at all that any donations are tied to certain behaviours-this is illegal.
Yet there does not need to be any contract between a group receiving money from a large donor for they’re to be influence. It is highly unlikely that any patient group getting large sums of money from a drug company, are going to be critical of that company. It is also likely that the group will do what it can to promote any company, which supports it. This is normal human nature.
So what happens when there are different ways of dealing with a health issue? Ask the Australian Lung Foundation about ways to quit smoking and you may get useful information about pharmaceutical aids. You may not be told that over 70% of people who quit successfully do it without any drugs and that “cold turkey” is the safest and most effective way to do it.
Impotence Australia may well inform you about medical treatments for impotence but have less information on hand about other ways of dealing with the problem.
Nobody is saying anything untrue. This is not what it is about. It is about providing selected information and presenting it in a way that makes one option seem the best or leave a person with the impression that there is only one option.
Likewise you hear much more from the Heart Foundation about the “dangers” of cholesterol than the dangers of lack of exercise. You also do not hear from them that there is no evidence to show that lowering cholesterol in people without heart disease has any affect on health.
The links between patient groups and pharmaceutical companies are going to the next level. The Cystic Fibrosis Foundation in the USA has invested $75 million in the development of a new drug, which goes before the FDA in 2012. If it is approved the foundation will receive royalty payments.
There are few treatments for Cystic Fibrosis so an effective new one would be welcome. However what if the drug is not effective or worse, what if it turns out to have side effects worse than the beneficial ones (anyone remember Vioxx?). If a foundation has $75 million to use, for people with a disease is this, the best use for it (searching for a treatment) or is it a form of gambling?
In different circumstances what if a patient support group had a financial stake in one treatment when there may be ten on the market including non-pharmaceutical ones?
More importantly if groups have a stake in treatment, then prevention becomes potentially a loss of business. Whilst this does not apply in CF, it would in most lifestyle diseases like Type 2 Diabetes, heart disease and even some cancers.
These are, in my opinion, serious ethical dilemmas. We assume that “not for profit” groups are independent and offer support based on need. If they have a financial stake in one option, it is foolhardy to think that this will not become a “preferred” option
Disease support groups are entitled to raise money and use it as they see fit and in accordance with their constitutions. If they are getting involved with large donors and investing in specific treatments than the public has a right to know.