Thursday, May 14, 2009

In Defense of Pharma and Patient Spokespeople

The Wall Street Journal published a big article on the front page today about a bipolar patient who had been speaking on behalf of BMS, and is now basically speaking out against the company. If you don't have a subscription to the WSJ you can find the full article, posted by the patient himself, here. I know this caused a stir today within our agency and with our clients; no doubt it will do the same nationally.

The article explains that patient Andy Behrman worked on behalf of BMS to talk about his experiences with bipolar and Abilify to Abilify sales reps, other BMS employees, and psychiatrists. The problem is, Mr. Behrman is now saying he’d only taken Abilify four days before his first appearance, and he experienced side effects severe enough he stopped taking it within a year. Supposedly he spoke with company employees about his difficulties with the drug, but they continued to pay him – $400,000 in all – to speak for them. There is also information about how he continued to ask for more and more money – eventually in the millions – and BMS turned him down. From the article:

Clearly, working with psychiatric patients can present unique challenges, as the case of Mr. Behrman suggests. Before the business relationship between Bristol-Myers and Mr. Behrman turned sour, it looked like an ideal match. In Mr. Behrman, the company got something of a celebrity in the bipolar community, since he had chronicled his struggles in a memoir about his illness and experimentation with shock therapy. For Mr. Behrman, the deal provided him with money and attention that he enjoyed.

Assuming the article is accurate (I learned a long time ago not to believe everything I read), I can say from experience that this situation is not typical. I have no connection to this particular situation. But throughout my career in public relations and digital marketing I've had the privilege to be involved in many projects that interfaced with a variety of patients – people living with a variety of chronic, often severe conditions. From race car drivers to mountain climbers to just “regular” people that inspire others, patient spokespeople are often a part of the marketing mix of how pharmaceutical companies connect with consumers, and with good reason.

Research and analytics have proven it out time and again: people want to hear about other peoples’ experiences. Experiences with life. Experiences with diseases. Experiences with certain treatments. The explosion of health-based social media sites proves this out. People learn, are encouraged, and are motivated by other people “just like them.” It’s part of the process of dealing with a disease, and often a key milestone in the road to patient empowerment.

Unfortunately the media tends to focus on the negative - that's what makes this a story. The WSJ basically admits this in the first paragraph with the sentence:

Bristol-Myers Squibb Co. has worked with hundreds of patients in its promotional efforts. The drug maker says every collaboration, except for one, has been positive for both Bristol-Myers and the patients who tell their stories. Andy Behrman is the one.

And of course the media has pounced on yet another story that feeds into pharma’s bad rap.

There are plenty of pharma companies that handle patient relationships responsibly, plenty of patients that behave ethically, and thousands of people who have benefited from other patients sharing their stories in meaningful ways. And of course the WSJ chose NOT to focus on them. In my experience companies are extremely conservative, careful and ethical with these relationships. Patients speak in their own voice and are treated with respect. Yes, their words are edited. But honestly most of the editing-out is of the overly positive (“this drug saved my life” or “I felt better immediately”), always striving for a more typical and balanced representation.

It's a shame that this entire situation happened at all, and for everyone's sake, I hope no one was misled by Mr. Behrman’s speaking. In fact, I hope many were inspired by it. But it’s unfortunate that this one bad apple will no doubt spoil the whole barrel.

Soon pharma-patient relationships will be under the same scrutiny as pharma-HCP relationships, and we’ll see a drop in having “real” patients share their stories and experiences in positive ways. And that’s just not good for anyone.

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