On Disclosure, Transparency, and Firewalls: A Call for Uniform Standards

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Since Patient POV was launched March 29, I have been struggling with how to deal with the issue of industry-supported patient advocacy groups. On Thursday, ProPublica released its paper: “Financial Ties Bind Medical Societies to Drug and Device Makers” with a splash. A billboard from a medical device company near the Moscone Center, site of the Heart Rhythm Society convention, opens the piece, stating that “thousands of cardiologists” attending the meeting have been “bombarded with pitches for drugs and medical devices.”I don’t doubt it. I have attended scores of medical meetings as a reporter and when I first started going to the meetings, I found the industry influence stunning.

Last Tuesday, I reported the American Academy of Ophthalmology’s (AAO) response to the finding that the cheaper Genentech age-related macular degeneration drug, Avastin, at $50 a dose, worked just as well as their high-cost drug, Lucentis, at $2,000 per injection. The AAO would not recommend for or against Avastin over Lucentis and cautioned that the drugs seem to work differently, that a safety signal must be explored further.
It is pretty easy, to say that we know where they are coming from. In fact, one of several stories on AAO’s website about the trial states emphatically—albeit near the bottom of one of the stories: “Congratulations to Genentech for developing the drugs and getting them to market, congratulations to all in Washington and particularly at the NEI who allowed the trial to go forward, and congratulations to the trials leaders (particularly Dan Martin, MD) and the investigators for designing and conducting a benchmark piece of science. And, finally, thank you to the 1,200 patients whose commitment to the importance of answering critical clinical questions led them to participate in the trial.”

There has already been spin from industry since this study was released in the New England Journal of Medicine, flagging of a possible safety signal in Avastin. That mounted to a crescendo last week. Genentech must be betting on safety throwing Avastin out of the water.
Nevermind, that Genentech flaunted a non-peer-reviewed study out of Johns Hopkins, claiming the “largest worldwide experience” and potential worrisome safety concerns with the cheaper drug. Not disclosed was that it was an unvetted study run primarily by Genentech authors.

But this wasn’t entirely my purpose in writing this today. I think big pharma and the medical device industry are out there. Medical apps, mobile, and software are also big and promoted by some patient advocates. Exactly what their relationships are to these companies is often obscure. I want patients to have transparent information to review, especially if someone is claiming to help them.

It hasn’t escaped me that big pharma and the medical device industry have their hand in media today. You can see ads for Novadisk and more sitting on top of NPR stories; Cleveland Clinic is up on Slate. They are not alone. Peer-reviewed medical journals get tons of money from industry.

Patient Advocacy Groups and Nonprofits

When it comes to patient advocacy and nonprofits, there is often even less transparency. Some don’t mention a single contributor on their website. Others openly provide the information. This raises so many questions. Do we reject them out of hand if they have money from industry? What is appropriate?

This inconsistency may result in pretty unreliable reporting. And sometimes I remember having read that company X operated outrageously in marketing a particular drug, and then I see that same company prominently advertised on a patient advocacy website. Should I discard that organization’s information out of hand?

If I ask some sites to speak with a patient on a disease condition, how do I know where that patient is coming from? What makes an honest patient anyway? Last week, I was working on a story on the NIH Stem Cell decision. The story was never written, but I spoke with the head of research at the Parkinson’s Disease Foundation in New York. I asked whether they could connect me with a patient. It turns out that they provided a patient, a cell biologist with Parkinson disease who was on disability, and had retired from the medical technology company Becton Dickinson. I wasn’t told this from the get-go, but I asked. Perhaps PDF gave me this person because this patient could answer questions about stem cells articulately. There was no incentive for PDF to tell me this, and I don’t fault them. You don’t have to be an investigative reporter to realize that patients with Parkinson’s disease might see limits with existing therapies. And you don’t need a brain surgeon or genius reporter to show you that a company like Becton Dickinson would benefit from the stem cell reprieve.

I am all for physician societies disclosing industry support. But that is just one aspect of the problem. How should media report? Can you watch a PBS show on the brain and not view it tainted because of financial support from a relevant funder? These issues need to be thought through.

I think that whether you are a physician society, media, or a patient advocacy or nonprofit group, the same rules should apply. In addition, if funding is given, the same firewalls should apply, and be transparent for all to see.