Yesterday, RocketBoom founder Andrew Baron took to the blogosphere to round up support in his efforts to get a rare drug approved for use in treating his father. His father was diagnosed with a very bad form of cancer called multiple myeloma and his dad’s doctor believes that there is a drug on this planet that has a chance in helping to save his life. It’s a long shot, but one you try when in desperate straits. TechCrunch joined in on the story and Xconomy has the details as to why the drug simply can’t be prescribed for an off-label use.
The drug in question is called Tysabri, and it is manufactured by a company called Biogen Idec. After getting FDA approval for this use, it was up to the company to make the final call on allowing the prescription. The company declined to do so, and so Andrew wrote the blog enty, which he calls an “Open Letter to James C. Mullen, CEO of Biogen.” In it, he lays out his case and, I believe, tries to shame the company into “doing the right thing.” Usually, it is an effective strategy, because a company would have to be some pretty serious PR lightweights to not appreciate the negative ramifications of allowing this story to snowball and into “Big Heartless Company Allows Dad to Die.”
Rather than debate the merits of whether Andrew Baron’s dad should get the drug or not (and whether this opens some sort of Pandora’s box for anyone else seeking the same drug for similar use), I want to focus on the e-Patients aspect of this story. That is, using a simple blog to get a personal health story out and stir up sympathy and action based upon it.
Once Andrew Baron published his Open Letter yesterday, it hit the blogosphere like a raging wildfire. Because Andrew Baron is fairly well-connected in the online technology world, his story was quickly picked up technology blogs. He’s also had the benefit of having some very well known politicians and celebrities make a case on his behalf.
Sadly, none of this has seemed to make much of an impact on Biogen nor its CEO at this time. Their PR representative is going around claiming it could harm their FDA standing and future trials of this drug to test its effectiveness in the treatment of multiple myeloma. (But it may just be about the company’s possible lawsuits surrounding Tysabri, no matter what liability limitations the family is willing to sign.) But regardless of the outcome, it demonstrates the power a lone voice can have in trying to change the system. And, if not change it for his father, at least educate people and make them aware of the current rules and unfairness in it. The blog comments on all of the above entries are interesting to watch how people are learning and educating themselves about this area “on the fly,” and gaining the benefit of new knowledge that they can then utilize in their own personal health care and that of their family.
The most amazing part of this story for me is that a single person, posting a single post to a single blog was able to rile up and educate a whole new set of people — folks who ordinarily wouldn’t much care about cancer and its treatment unless personally affected by it. That is the true power of e-patients — people learning and teaching others, and everyone coming together to try and problem solve to save someone’s life.
The father received the drug. We only hope that others in equally desperate situations — without friends in high places like Bill Clinton and Lance Armstrong to lobby on their behalf — can also get access to these kinds of medications more easily in the future.
John,
Do you know how they succeeded in changing the CEO mindset?
Not much was said in regards to what changed his mind. I suppose constant pressure from dozens (maybe even hundreds) of strangers may have finally changed his mind, as well as re-examining the legal liability of providing the drug.
I too would agree with the comment – “That is the true power of e-patients — people learning and teaching others and everyone coming together to try and problem solve to save someone’s life.” I think this is a very interesting example of a drive for patient centeredness—My father died a few months ago and had the opposite happen to him which I think is even more common. He had services worth hundreds of thousands of dollars given to him he did not want — even had a directive against. I showed up in his hospital room after he had a fall with only 8% cardiac function with end stage congestive heart failure. They had place a pacemaker in him and his first question to me was “how did this thing get in”? and how do I turn it off? Will this go off and not let me die make me suffer more? He had a directive not do such a thing but no body contacted his primary care doctor – turns out this happen well over 50% of the time in the USA. Nobody bother to ask his wife sitting in the waiting room – nobody cared.
Ask your self a basic question around the issue of the banking system melt down — what was it all about??. Well the TV commentator I heard yesterday said it was greed. Bankers forgot who they worked for they failed to wake up every day and ask the question what can I do for my clients today to make them economical safe and secure — instead they woke up and ask how can I make money for myself? Now ask yourself is this the core of the issue in healthcare as well?? Has it boiled down to that in our healing profession? Do we doctors really have a lack of professional ethics?? — But why else would there be 30% excess care reported by hundreds of articles in the healthcare lit. I am very sad to have to tell you a truth – no longer can you count on the professionalism the pride of doing the right thing in healthcare to be the norm among physicians. Place like e-patients to blog are more important every day
Paul Grundy MD
Chair http://WWW.PCPCC.net