Dr. House, the fictional diagnostician played by Hugh Laurie, on the Fox TV series "House," was often wrong, never in doubt and always chose the more invasive treatment. While instructing his trainees to break into the patient's home looking for diagnostic information, Dr. House would defend the intrusions as necessary because, after all, all patients lie. His diagnostic abilities came from uniting the dots to reveal a narrative and diagnosis.
OK, so let’s connect some dots here.
In November, Dr. Otis Brawley, chief medical officer of the American Cancer Society, resigned over having “questionable” business partners, like Herbalife and the restaurant chain, Long John Silver’s. Last week, a tweet pointed to a report that 75% of cancer-related patient advocacy groups receive funding from the “biopharmaceutical” sector. Now comes a third dot, a report in the British Medical Journal, which found that patient advocacy organizations infrequently reported funding that might potentially create conflicts of interest.
Patient advocacy organizations are non-profits whose mission is to improve the care and lives of patients suffering from a specific disease or disability. Incorporating their viewpoints when assessing new medical technologies, drugs, and devices provide unique insights while mproving policy determinations. That Big Pharma and Device might provide financial support to these groups should not be surprising. After all, they have aligned interests.
The researchers looked at assessments made by England’s National Institute for Health and Care Excellence, or NICE. Unlike our FDA, NICE is the ultimate regulator, approving a treatment not just to be marketed, but to be placed on the National Health Services (NHS) formulary along with the cost for that service. Medications and procedures on the NHS formulary are covered services, so NICE’s decisions carry significant weight for manufacturers that are bringing treatment to market, as well as patients hoping to avail themselves of better care and outcomes.
In two years, NICE performed 97 appraisals, and after some reasonable exceptions 41 formed the basis of the researchers’ review. Forty-six patient organizations, out of 53 commenting on these assessments, had sufficient financial information to complete the data set. The majority of the commenting took the form of written evidence to be considered along with clinical and economic data. Or nominating a “patient” expert, most often a patient organization employee, e.g., CEO or trustee to provide oral and written testimony. Roughly half the time that testimony commented on drafts of NICE guidance or the definitions of the population at risk, comparable technologies and outcomes to be considered.
These patient organizations varied widely in size, funding, and industry support [1]. Like all of NICE’s stakeholders, the patient organizations are afforded several opportunities to declare potential conflicts. Roughly 80% of patient organizations had funding from industry while providing their assessments. Forty percent of the time no declarations of potential conflicts were required; 41% of the time their “special interests” were declared. Only 21% of the time was NICE unaware of declarable and non-declarable potential conflicts.
But before rushing to judgment and concluding that these lapses and failures to declare a potential conflict make a difference, we should note that whether they reported a potential conflict or not all the “patient” experts got to testify. The authors end with a bit of their own conflicted view, while noting that “interests do not equate to a lack of independence of an organization,” and they feel that "transparency about funding sources is critical to allow decision makers to make informed judgments about the relevance of any declared interests.”
In the last year, conflicts of interest have been identified for the physician, manufacturers and now patients. Is there anyone left who isn't conflicted? The only groups left are the policymakers and the journalists. Are they the only ones with integrity?
Consider arguably another patient advocacy group, the American Heart Association, which with $865 million in revenue was ranked 22nd among the 100 largest “charities” in the U.S., according to Forbes [2]. I have included a list of their corporate sponsors [3] to which they freely admit, and who I believe do not exert undue, unwarranted influence on the positions taken by the AHA.
But here is my question, why do these groups get a media “pass” and “investigative journalists” come solely after physicians? Why would ProPublica choose industry-physician relationships when they could as easily investigate industry-patient advocacy relations? A hallmark of bullies is that they pick on the weak and defenseless.
Physicians are easy targets to fit a narrative around. Their power is apparent in the aggregate, But organizing physicians, as many of us know or learned, is like herding cats. The individual physician demonized for accepting a lunch for their staff, while they listen to a drug or device representative, is an easy straw man. It is beyond comprehension to believe that individuals who seven to 10 years after college in training, working 80 hours a week with a guarantee of one day off, would compromise patient care for a Subway sandwich and a bag of chips. Except for a few physicians called out for their behavior, physicians are too busy doing their job to think their collective reputation is being tarnished, let alone being tarnished to attract readership.
Have we as a society become so cynical that our default view is that physicians – and now patient advocates – are all on the take?
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[1] Finances ranged from about $23,000 to over $120 million, and industry support ranged from as low as 1% to 70%.
[2] That list is intriguing, for example, the American Heart Association is just a view steps behind #17, the American Cancer Society and a few steps ahead of the Mount Sinai Health System – I didn’t know it was a charity, I thought it was a health system/conglomerate – that non-profit status has an interesting way of being defined.
[3] Alex & Ani, Amgen, Aramark, Aralez Pharma, AstraZeneca, Bayer Aspirin, Bayer Crop Science, Bayer Pharma, Boehringer Ingelheim, BonTon, Bristol-Meyers Squibb, BMS/Pfizer Alliance, Brita Products Company, CVS Pharmacy, Dr. Scholl's, Edwards Lifesciences, Genentech, Gilead, HASS Avocado Board, HealthSouth, Interactive Health, Jewelry Television, Kindred Healthcare, Macy's, Mazda, Medtronic, Novartis, Philips Electronics North America From AHA website.
Source: Financial Interests of Patient Organizations contributing to technology assessment at England’s National Institute for Health and Care Excellence: policy review BMJ DOI: 10.1136/bmj.k5300
