Over the past few decades, hundreds of patient-advocacy organizations have emerged in the United States, promoting disease research and influencing legislation and FDA and health insurer policies. A new study has revealed that a large proportion of these organizations have funding or other connections with drug or medical device makers, but do not adequately disclose these connections.
The study, led by medical ethicists at the Perelman School of Medicine at the University of Pennsylvania and published in the New England Journal of Medicine, suggests that patient advocacy organizations should acknowledge industry connections.
Media reports have highlighted the fact that some industry-funded patient-advocacy organizations support the industry line on policy issues, for example by failing to support drug-price reform measures, and by pushing insurers to cover expensive drugs whose benefits to patients are questionable.
In the new study, the team examined websites and annual reports for 104 US-based patient-advocacy organizations with annual revenues of US$7.5 million or more.
Results showed that the vast majority received industry funding. More than 80% explicitly reported it, and most of the rest left open the possibility by providing no donor information. Only one of the 104 stated plainly that it did not accept industry funding.
Information on donations was typically provided in broad ranges, and in some cases not disclosed at all. But, among the 59 organizations that published donated amounts, 23 reported receiving at least $1 million annually.
The study revealed other connections to industry besides financial support. More than one-third of the reviewed organizations had one or more board members who were also company executives. In 12 of the organizations, the industry executive held a leadership position on the board. But only 12 of the patient-advocacy organizations had published policies addressing such institutional conflicts of interest.
"Our findings provide support for a new 'sunshine' law to oblige drug, device, and biotechnology companies to report the payments they make to patient organizations in the same way the must report payment to physicians and teaching hospitals," said lead author Matthew McCoy. "Greater transparency would allow citizens, researchers, policymakers, and others to assess conflicts of interest of patient-advocacy organizations in a way that is not currently possible, and would make it easier for patient-advocacy organizations that accept little or no industry support to differentiate themselves from those that are heavily dependent on such support."
A State Senator in Hawaii, Breene Harimoto gave an emotional address this week to persuade his colleagues to vote against a bill for legalising physician-assisted suicide for the terminally ill. He said that in 2015 he had been diagnosed with pancreatic cancer, which has a low survival rate and can be quite painful. But he was cured. “It is a miracle that I am still alive,” he said.
His point was that “terminal illness” is almost meaningless. Margaret Dore, a Seattle lawyer who lobbied against the bill, recalls an even more dramatic incident. “A few years ago, I was met at the airport by a man who at age 18 or 19 had been diagnosed with ALS (Lou Gehrig's disease) and given 3 to 5 years to live, at which time he would die by paralysis. His diagnosis had been confirmed by the Mayo Clinic. When he met me at the airport, he was 74 years old. The disease progression had stopped on its own."
If Senator Harimoto or Ms Dore’s friend had the option of assisted suicide, they might stopped fighting their disease and chosen a quick death. They would have chopped decades off their lives. “Terminal illness” is a pillar of assisted suicide legislation – and it just doesn’t make sense.
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BioEdge: Patient advocates often in cahoots with industry