Everyone with an email address has received them – messages publicising a petition that seeks government recognition in some form for a medical condition; recognition of the condition itself, or for a particular treatment, or a Pharmaceutical Benefits Scheme subsidy for a new drug.
They tug at the heartstrings, with pictures of photogenic sufferers and an emotional plea for assistance for some individual in need. The issues seem so simple. Why won't the government help? How can it be so cruel?
![Almost daily there are new cures as a result of pharmaceutical companies' research, or new ways to relieve painful or ...](http://web.archive.org./web/20180101230827im_/https://www.fairfaxstatic.com.au/content/dam/images/g/t/w/e/4/y/image.related.articleLeadwide.620x349.gtwe68.png/1485072891519.jpg)
As we reported last week, the issues are rarely as simple as they are made to seem. Behind the one publicised individual battling a rare condition is most likely a patient support group – a collection of former and current sufferers, medical professionals, researchers and perhaps drug company representatives.
These groups can do excellent work for individuals who are suddenly diagnosed with a rare illness, offering reassurance, support, background information, help to deal with medical institutions, news about new treatments, and referrals for people who are understandably anxious and might otherwise be overwhelmed by an unexpected situation.
More generally they can recommend ways the health system might improve the treatment of sufferers of their particular condition, or support the training of specialist staff. In all this, though, the role of large pharmaceutical companies is a complicating factor.
Pharmaceutical companies support advocacy groups with money and advice – but their support is far from disinterested. Pharmaceutical companies, let it be said, also do a great deal of valuable work: the new drugs they regularly invent offer hope for sufferers where no hope existed before. Almost daily there appear new cures as a result of their research, or new ways to relieve painful or disabling symptoms.
Nonetheless, they are private businesses and the motivation for the good work they do is to maximise the profit they can make by doing it. Drugs, like any other product, sell better if they are well marketed. And marketing is something at which drug companies are very good indeed. Their marketing campaigns go far beyond simple advertising – as far as influencing at times the research published on the effects of drugs they make.
Another aspect of this remarkably thorough marketing is support for patient advocacy groups. The scale of their support is difficult to quantify exactly, because no figures are published, but as the researchers quoted in our report found, two-thirds of the 439 patient advocacy groups they examined reported receiving funds in some form from industry sources, and one in 10 reported gaining more than half their funds that way.
Once again, though all this funding can be expected to further the drug companies' interests, that is not necessarily a bad thing: new treatments and improved drugs may be publicised this way. However once the advocacy groups gain support in this form, it is only natural that they will be more reluctant to criticise the drug companies or their products, and more enthusiastic in their support.
The arguments of the patient advocates, in other words, become distorted, and for that reason less valuable as a basis for decisions.
Ministers for health, and those who advise them, are the wall against which the regular waves of emotion whipped up by these marketing campaigns eventually break. As we are constantly told, revenue increases slowly, but health costs are rising steeply, driven in part by the very research discoveries which the pharmaceutical companies are marketing.
Ministers and bureaucrats are the ones who must say: "This far, and no further." They decide between the hundreds, perhaps thousands, of competing claims for public funding, supporting some completely, some in part, and the rest not at all, from a fixed amount of public money. It would make the political task of ministers and the health bureaucracy easier if the process were entirely transparent.
If the public could find out quickly and easily the sources of support for patient advocacy groups and others who lobby governments for favourable treatment within the health system, the nature of the transaction being conducted would be clearer, the pressure for partial decisions would be less, and the likelihood of a fairer outcome would be increased.
There is no need to single out health, either. The same transparency should be required of all or groups who lobby governments for public funds or favourable decisions.