Great occasions do not make heroes or cowards; they simply unveil them to the eyes. Silently and imperceptibly, as we wake or sleep, we grow strong or we grow weak, and at last some crisis shows us what we have become. – Brooke Foss Westcott, British Theologian, 1825-1901
BioMarin Pharmaceutical continues on the war path
Two weeks ago, I forewarned that BioMarin Pharmaceutical was headed toward a crisis and last week we discussed the accidental “reply-all” email the CEO sent out revealing the company’s crisis strategy. I could never have predicted this week’s developments.
I have witnessed and studied crises of one sort or another over the last two decades and I have difficulty recalling too many examples of companies handling issues they face as poorly as BioMarin has.
Oh, we had Kenneth Cole tweet a few months ago that the uprisings in Egypt were caused by his Spring collection; and Abercrombie & Fitch has endured several years of criticism after their CEO said that the company only markets to good looking people. But even in tasteless fashion empires, we do not frequently see CEOs go on email rampages in response to public outcry about their company’s behavior.
Supporters of Andrea Sloan have forwarded emails I will share below, and in conversation with Andrea, she discussed with me her feeling of having been mislead by the company’s Chief Medical Officer, who is no longer a licensed doctor.
To catch you up if you have not read previous articles on the situation, Andrea Sloan is an ovarian cancer patient. Her doctors at MD Anderson say that due to her treatment history, traditional, available therapies will no longer be tolerable by her body. BioMarin pharmaceutical has had a drug in trials that the FDA has indicated it will permit Andrea to use if the company will give it to her. BioMarin has promoted this particular drug, BMN673, to investors as the safest and most effective drug of its type. But to Andrea and her doctors, the company says they just don’t know if it is safe enough. Over the last few years, the FDA has allowed over 3,000 patients to use drugs that are not yet approved as, basically, a last resort; while denying only a handful of such requests.
What Not To Do if You Are a CEO
Supporters of Andrea Sloan have used social media and letter writing campaigns to appeal to the company in hope they will allow her and others who face her circumstances a last hope. The letters that I have seen range from heartfelt appeals for moral and ethical behavior, to logic and business reasons it would make sense for the company to grant Andrea compassionate use of their drug.
For a couple weeks, most of the emailed letters Andrea’s supporters sent to the company went unanswered. Over the last few days, though, that changed; and in a somewhat dramatic manner.
BioMarin’s CEO, Jean-Jacques Bienaime, suddenly started replying to the emailed letters. Far from the measured, careful responses one would expect to come from the CEO of a company, Bienaime resorted to insulting language and at times, unable to come up with his own words describing his perspective, forwarded someone else’s email calling Andrea Sloan “petulant” and “spoiled” as his response.
In Bienaime’s “reply-all” email discussed last week, he laid out two strategies for fighting Andrea: 1. Contradict her doctor’s conclusion that BMN673 is the only drug that has a potential of helping, and 2. Hire a PR firm. Bienaime made good on the aim to contradict Andrea’s doctors in a national media appearance, but BioMarin is apparently still in need of a PR firm; and one which specializes in crisis management at that.
The email exchanges:
What follows is an email exchange; the first from a supporter of Andrea to Bienaime, the second, his reply to that email:


Beyond it being difficult to understand why his reply is about insurance coverage, which has nothing to do with the situation at hand, his tone is entirely inappropriate. Does BioMarin’s Board of Directors support their CEO’s statements? How do his investors feel? If the company had any type of crisis management plan in place, Bienaime’s responses would not have fit within it.
To another supporter of Andrea, instead of writing his own reply, Bienaime simply forwarded someone else’s words as his response. The email is far too long to paste here in its entirety, but toward its conclusion, it reads:

On social media, supporters of Andrea were livid and a number of them wrote the CEO in complaint of his having endorsed that perspective of Andrea. Here is an excerpt of Bienaime’s reply relevant to those complaints:

No matter what kind of email the CEO of a company gets, this kind of response is never the correct reaction. How does the CEO of a public company think these replies will help his company in any way? And surely he understands that by writing no words of his own in response and simply forwarding someone else’s words instead; those words become his own.
Also of concern: licensing
Given that BioMarin’s primary strategy to deny Andrea the drug is to disagree with her doctors at MD Anderson regarding the availability of other options, it came to a surprise to Andrea Sloan that the Chief Medical Officer of the company let his license lapse a few days short of five years ago. According to The Medical Board of California and referencing the date on the image below, if Dr. Fuchs does not renew his license by the end of this month the license will be canceled entirely.

While it is not illegal for Dr. Fuchs to serve BioMarin as its Chief Medical Officer without an active medical license, there has been controversy in other places where problems have occurred in entities which had a non-licensed doctor as its CMO. In this situation, Andrea Sloan feels mislead because she was told that she needed to sign a waiver so that her doctor at MD Anderson could talk to their Dr. and Chief Medical Officer.
Because of communications Dr. Fuchs has had regarding Andrea Sloan’s medical condition and the company’s insistence – amounting to medical advice – that she has other options, at least one Texas Legislator has agreed to file a complaint to the Medical Board of California for there to be an investigation into whether or not Dr. Fuchs actions amount to practicing medicine without a license.
How Does This End?
BioMarin, some argue, is justified in deciding to wait until later in the drug’s trial process before dispensing it outside of trials for any reason. But even setting aside bioethical and moral issues surrounding the ability of a dying patient to have every treatment available that has shown promising results, how can the company justify promoting the safety and efficacy of the drug to investors if they will not stand behind those claims with critically ill patients?
Crisis management can get somewhat complicated at times, but for the most part, common sense dictates the bulk of it. BioMarin, and its CEO in particular, has gone off the rails in their response to the tens of thousands of people who have called on them to provide compassionate use to Andrea Sloan. At this point, the source of the damage that is occurring to the reputation of the company is happening not because of the actions of those contacting the company, but because of the actions of the person who is supposed to be capably guiding the company.
In a situation like this, if I were advising the company as a Crisis Management consultant, I would go directly to the other board members running the company and suggest they sideline the CEO for the duration of the crisis and set forth in a new direction that is less damaging to their mission as a company.
Note: as of publication, the BioMarin PR department has not responded to a request for comment regarding the validity of these emails.
Heather Elias
May 12, 2008 at 3:19 pm
Congrats Jeremy!! Great addition to the fantastic group already assembled here. =)
Andy Kaufman
May 12, 2008 at 3:27 pm
Hey Jeremy (or should I say @nrvliving) really glad to have you on board.
I’ve really enjoyed our online interactions and look forward to meeting you IRL sometime soon.
Ben Martin, Va Assn of REALTORS
May 12, 2008 at 3:41 pm
Representin’ Virginia. Wait until he comes strong with a Members Only jacket post.
Rob Wood
May 12, 2008 at 3:50 pm
Looking forward to reading more 🙂
Mike Price
May 12, 2008 at 3:55 pm
welcome jeremy
~MP
Glenn fm Naples
May 12, 2008 at 4:06 pm
Welcome Jeremy – I look forward to your posts here at AG.
Matthew Rathbun
May 12, 2008 at 4:46 pm
Awesome choice! I actually have met Jeremy, and have been him for a long time. GREAT guy and I really look forward to seeing more from him!
Scott Brunner, VAR
May 12, 2008 at 4:47 pm
…bringing to at least five the number of talented Virginians writing for Agent Genius…but who’s counting?
Congrats, Jeremy.
Ricardo Bueno
May 12, 2008 at 5:12 pm
@NRVLiving Welcome to the group! See in you in the twittersphere 😀
Bob Whitney
May 12, 2008 at 5:40 pm
Great concept. As an old fart (first licensed in 1978) with Coldwell Banker Commercial out of San Francisco, I haven’t lost my enthusiasm for “setting yourself apart from the vanilla crowd”.
You are doing so with this departure from the norm. Congratulations on escaping from the box.
Teresa Boardman
May 12, 2008 at 6:46 pm
What is a nice guy like you doing in a place like this? Just kidding this is a nice place. Welcome. You know you have no idea who I am. I need to write a post so Lani and Benn don’t hunt me down and take back the unicorn and the kitten they sent
Jeremy Hart
May 12, 2008 at 7:19 pm
Thanks everyone! I still think some kind of a mistake has been made, but I’ll roll with it and see how it turns out! Look at those names on the Writer list, these are the big boys and girls – thanks for welcoming me in, I look forward to writing and reading and learning!
Jeremy Hart
May 12, 2008 at 7:22 pm
Teresa, you got a unicorn? Freaky? I’m waiting on my pimped out golf cart with spinners and a killer 8-track system; I think Lani’s keeping it all to herself, although I can’t prove it … yet.
ines
May 12, 2008 at 8:25 pm
@NRLiving !! this is great!! How am I not surprised…..welcome!
Bill Lublin
May 12, 2008 at 8:40 pm
Jeremy –
They keep me around so you don’t ever have to feel they only invite articulate and educated writers!
Real glad to have you join the group. Can’t wait to read you. Just started following your twitter too!
Mariana
May 12, 2008 at 9:38 pm
WELCOME! Nice to have you aboard… Have fun. ‘Cause we all do!!
Jay Thompson
May 13, 2008 at 6:40 am
Welcome to the machine.
Vicki Moore
May 13, 2008 at 1:20 pm
Hey – Welcome. See you at Twitter.
Shailesh Ghimire
May 13, 2008 at 10:20 pm
Welcome Jeremy!
Maureen Francis
May 14, 2008 at 4:28 pm
Warm welcome, Jeremy!
Jeremy Hart
May 14, 2008 at 4:33 pm
Mariana, Jay, Vicki, Shailesh, Maureen … All … Thanks!