Healthy Skepticism Library item: 803

Warning: This library includes all items relevant to health product marketing that we are aware of regardless of quality. Often we do not agree with all or part of the contents.

Publication type: news

Bouma J, Brandt E.
Money and pills
Trouw (Netherlands) 2005 Feb 5

Full text:

Its grip is overpowering. Patient groups that are sponsored by medicine producers an ever-increasing phenomenon lose their critical ability they remain silent instead of speaking out.

The “Bloedlink Foundation”- for patients with inherited heart and circulation problems received last year more than half its income from producers of cholesterol reducing medicines (MSD, Pfizer, AstraZeneca).

The PGO Trust that distributes government money amongst patient groups regards Bloedlink’s activities with concern; Bloedlink would seem to have been set up by industry to encourage the use of cholesterol reducers. When Pfizer was reprimanded for forgetting to inform doctors of a serious side effect of Lipitor, Bloedlink tried to calm the waters by pointing out that the information was included in the patient information leaflet.

This, says Jeremy Smith of Health Action International, is one of the symptoms of heavily sponsored patient groups. They remain silent when they should be speaking out. If a company makes a mistake over their product then you would expect that a patient organisation would speak out and protest on behalf of their members. The influence of the pharmaceutical industry on patient organisations is shown by the lobby work [of patient groups] for certain medicines, but also by their silence.

Other patient organisations (for epilepsy, diabetes and mental healthcare) are also heavily subsidised by Pharma. Pandora, one of the patient organisations for mental healthcare, is increasingly aware of how sister organisations who originally were critical are now willing to participate in the big world of big money. Several organisations remark that their work would be impossible to do without help from industry (e.g. self-help tests on websites, office running costs).

Why does Pharma sponsor patient organisations? Of course in order to improve their profile says one patient organisation. Many patient organisations say they could take far more sponsor money from the industry, but several are aware of the fact that they would then risk losing it if they later criticised that industry’s products. The NPCF say that many patient groups are short of money. This is confirmed by EVN (for epilepsy
patients) who pointed out that many patients cannot afford the membership fee, and rising costs are not met with increased sponsor sources.

Those patient organisations who are sponsored by industry claim to keep their independence by accepting funding from several pharmaceutical companies, or by using the money only for certain one-off activities, and not for core funding purposes. Many have contracts with extensive provisions laid down concerning influence of the sponsoring company.

Prof. A. Hardon says influence is however inevitable and often unconscious. A neurologist adds that Pharma often takes advantage of the scientific naivety of patient organisations. Patients are naturally very concerned about their illness and want good medication. They often have their backs to the wall. In that type of situation one doesn’t always act rationally. Pharma knows that and uses that to their advantage.

Nefarma counters this view: patient organisations know only too well what they want. They often know more about their illness than Pharma does. Of course Pharma wants the new treatments highlighted. But a patient organisation really isn’t so vulnerable that it would let itself be used by Pharma.

Many patient organisations admit fact that they are aware of possible conflict of interests but are amazed at the extent of some of the funding given to some patient organisations. Prof Hardon states that the problem of influencing is that it is so difficult to point out. Usually the patient group has the same approach as the industry and advocates the same line; nearly always the treatment is based on using certain medicines, whereas in some cases non-medication would also be possible. She cites Pandora as being a good example of a sponsored patient organisation that still remains critical of medications.

The PGO Trust would prefer all the sponsor money from Pharma to be put in one pile so that it can be distributed by the Trust thereby also helping those smaller organisations that represent those with rare diseases.