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.
Vance Shutes
July 2, 2008 at 11:12 am
Nick,
It strikes me that our present market conditions will slowly, but surely, marginalize these types of practitioners. It can’t happen fast enough.
An article like this causes me to stand before the mirror and ask “Is this me?” Thanks for the reminder!
Matthew Rathbun
July 2, 2008 at 11:40 am
NIck, I really was sorry to hear about your dad and I know it’s still a struggle to help the family get everything back in order. I am also sorry about the callousness of the agent you encountered. There’s just no excuse.
As for the rest… sigh
The agents encounter day to day, off line are exceptional folks who are great people, but from time to time I’ll hear them talk to clients or such and their “agent” salesy mode kicks in and it’s sad to watch. I can’t help but think if they’d just be themselves and treat the client as a person instead of a “deal” they’d all be better off and probably make more income.
Benn Rosales
July 2, 2008 at 12:06 pm
Fantastic Nick, just fantastic. But as great as you make us out to be, I know that in some of the most awkward moments in my life I have said the most horrible things.
Which reminds me so much of the outreach from the real estate blogging community (rebc) when so many of our profession reached out to Lani and I and lifted us up. Some of the folks that say things in the public eye that I don’t always agree with threw out the baggage and humbled themselves to our needs.
I guess what I am trying to say is that all of us do and say the most stupid things at the worst possible times, but thank God we all have the capacity to bring greatness thanks to constructive criticism such as the one you just delivered.
I’m human, and so are we all, and on behalf of the agent, I extend my most sincere apology for just being ridiculously human.
Frank Jewett
July 2, 2008 at 12:18 pm
Gosh, and here I thought I was having a bad week because the last three Realtors I called didn’t identify themselves when answering their phones… and I was returning their calls or responding to their e-mails. Nick’s right, there are a lot of cynics in the industry. I think it’s because there are a lot of coaching programs that attempt to turn otherwise normal, thoughtful people into cynics. Now let’s roll play a pop-by where we don’t really care about the person we’re visiting because we’re thinking about the stack of personal notes we need to write when we get back to the office.
Nick Bostic
July 2, 2008 at 12:40 pm
@Vance – I learned at some point in my life that every once in a while, we have to take an honest look at who we are at that moment and decide if that’s really who we want to be in the future. It’s been incredibly valuable for me to do so from time to time as it has completely shifted my life each time.
@Matthew – I did pretty cut-throat sales for quite some time and learned that by NOT using those salesy techniques you mentioned, I actually did better. I know the people who treat my like a person and not a deal, in every industry, will get my long-term business and plenty of happy referrals.
@Benn – I completely agree that sometimes we say things we don’t mean to, to me though, it’s the acknowledgment and attempt to fix it that is important. And people do need to be careful with what they say and offer apologies when necessary because word does get out these days and a reputation can go downhill very quickly. I could have named names on this post, for instance 🙂 Instead, hopefully they will read and learn.
@Frank – Your example of not caring because you have something else on your mind hits home. Being on the computer all day, I realized some time ago that I had to close the lid on my laptop when taking a phone call. Otherwise, I’m multitasking between blogs, my feed reader, Twitter and all the other crap we have going on. It’s tough to block out everything else, but sometimes that’s what needs to be done. When I sold $100 cell phones, I forced myself to do it, if I were selling $300,000 homes, I would definitely do it.
Jay Thompson
July 2, 2008 at 6:33 pm
“…see how much they care and help the community they are in. Many of you do the same. Supposedly that’s a common trait of Gen Y, we like to give our money and time and we respond well to others who do the same.”
It’s a trait of some Boomers too… I think human beings in general, regardless of generation, respond well to thoughtfulness and caring.
At least I want to think that. I’m sticking to it….
Sadly, many don’t seem to get it.
Nick Bostic
July 2, 2008 at 7:02 pm
@Jay – you’re definitely right, it’s not just a Gen Y thing. I’ve just been reading a ton of Gen Y books lately and they keep pointed that out as a common trait as though the others don’t, but I know you do.
Bill Lublin
July 3, 2008 at 5:09 am
@Jay Boomers Rock! We’re much more generous the Gen Y folks (who have only one letter to their name). But in any case good people try to do the right thing- of any age. And that you and I (and many of the people we value understand that generosity and caring are rewarding by themselves- I am so grateful I have and the people who enrich it from my wife, son, and daughter-in-law to my friends here – that it would be just wrong not to help someone if I could, or to care about someone else’s situation) But that comes from perspective, and the people that Nick recounts here didn’t have that.
@ Nick when I read this so many things ran through my head that it would be a post but I don;t want to write that one yet. I have agree with Frank and Matthew that some of its a result of people following scripts and thinking less about the situation then they are about the person in front of them. People are all the stars of their own movies, and it is that sad but true fact that sometimes allows them to forget that the other players in the movie are crucial to the succes or failure of the movie. Times are tough financially for many people ans they become so focused on form that they lost sight of the things that are really valuable in their interaction with people.
I have always believed in business that if you worry about taking care of people properly, the income follows. Too many people don’t get that and they parrot words in chase of a success that seems to elude them.On the flip side people you never met in person actually care deeply about you and your family – and that says something about people.
Glenn fm Naples
July 3, 2008 at 6:09 am
NIck – you may have ranted but it is the truth. Sometimes, we have to drop back and take a look at ourselves.
Paula Henry
July 3, 2008 at 8:00 am
Nick –
This reminds of the saying ” Noone cares how much you know, until they know how much you care.