Jane McCredie: Health charities must be transparent

A TEARFUL patient fronts the TV cameras: a mother of two young children, she’s battling a life-threatening illness and has mortgaged her house to pay for a new wonder drug that penny-pinching bureaucrats are refusing to fund.

Who do you think will win this particular public relations war? The policymakers who have to make complex decisions about the cost-effectiveness of often very expensive new treatments, or the commercial interests that may lie behind the media campaign?

If the barrage of heart-breaking stories about people with life-threatening illness keeps up, it won’t be long before the Health Minister appears on our screens expressing delight that the miracle treatment is to be funded on the Pharmaceutical Benefits Scheme.

Health advocacy groups often participate in these media campaigns, bemoaning that the patients they represent are being denied a potentially life-saving treatment.

Nothing wrong with that, it’s part of their role.

But are the charities that advocate for patients truly independent of those who stand to profit financially from public funding of a new drug?

Researchers recently examined donations to US health advocacy groups by pharma company Eli Lilly and found ― surprise, surprise ― the funding was closely linked to commercial interests.

More than 90% of the company’s grants to advocacy bodies went to those working in its three main therapeutic areas of neuroscience, endocrinology and oncology.

The researchers noted that Lilly’s funding guidelines said recipients were not “obligated or directed” to use the funds in ways that would benefit the donor, but stipulated they should be committed to “market oriented solutions to important health care issues” and that the company expected to build long-term relationships based on “mutual support”.

The researchers found that only 25% of the advocacy groups that received Lilly grants acknowledged the contributions on their websites, and only 10% acknowledged Lilly as a sponsor. None of the groups disclosed the exact amount of a Lilly grant.

It’s not fair to single out one company, of course.

Questions have been raised in the past about industry involvement in apparently patient-driven campaigns for funding of new treatments for cancer, diabetes and dementia, to name a few.

There’s no question that health advocacy organisations do valuable work in supporting patients and advocating their interests, and that they rely on donations to do it.

But pharmaceutical industry funding has the potential to compromise their independence and undermine public trust.

Such conflicts of interest should, at the very least, be declared ― and not just on some tucked-away corporate donors’ page on an organisation’s website but every time a health advocacy organisation mentions one of its donor’s products.

Full transparency is the most prudent option when a patient group takes money from a commercial interest.

And the only ethical one.

Jane McCredie is a Sydney-based science and medicine writer. She has worked for Melbourne’s The Age and contributed to publications including the BMJ, The Australian and the Sydney Morning Herald. She is also a former news and features editor with Australian Doctor. Her book, Making girls and boys: inside the science of sex, will be published by UNSW Press next month.

Posted 24 January 2011