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.
Teresa Boardman
March 17, 2008 at 4:46 pm
I have been threatened a couple of times and I always stand my ground. I won’t let someone bully me or tell me what I can or can not say. i have been threatened with legal action too, I consider it part of my job.
Matthew Rathbun
March 17, 2008 at 4:49 pm
Jay,
I think threats from attorneys are just going to get worst. What really sucks is the fact that we have to weigh if “being right” and having the freedom to post our opinion about someone is worth the lawsuit. Even if you “win”, you could still loose. **sigh** so much for the freedome of expression….
Vlad
March 17, 2008 at 4:50 pm
Jay,
I wish I did not take the posts down either. But I have learned from my mistakes.
I appreciate your link, however I think you might be unnecessarily exposing this blog to attacks from ePerks including their lawyers.
granthammond
February 23, 2010 at 5:30 pm
Hey Vlad,
Was this issue ever resolved? I am curious as to the outcome of the C&D letter as ePerks has trailed off the map.
Late Night Austin Real Estate
March 17, 2008 at 9:28 pm
One thing I love about the internet is a C&D letters usually bring about more negative publicity for the company. I also dont like eperks strategy of advertising through paid posts
Bob
March 17, 2008 at 10:59 pm
That was quite a letter!
Paid posts are not for advertising, but for links. If you are doing paid reviews, be careful. It’s a good way to see your blog stripped of it’s ability to pass page rank.
Jay Thompson
March 18, 2008 at 1:06 am
Vlad wrote; “I appreciate your link, however I think you might be unnecessarily exposing this blog to attacks from ePerks including their lawyers”
ePerks and / or their lawyers are more than welcome to come after me. I am the one fully and solely responsible for this post. I can be reached at jay@thompsonsrealty.com or 480-235-4447.
Bring it on. I double-dog dare them.
Russell Shaw
March 18, 2008 at 1:27 am
I had never even heard of ePerks until just now (which I suspect is true for most people). Totally okay to send me the posts they insisted be taken down. I have a URL that is hosted in Australia and I love legal threats.
Vlad
March 18, 2008 at 9:40 am
Russel,
Thanks. No need to for these articles to be hosted in Australia. In fact I have just updated my yesterdays post and have allowed access to post titled “ePerks- a Scam or a Gem”. Most of the accusations in C&D is based on that post.
I also should mention that one of the post, which I will recover as well, had nothing but constructive criticism for their model. I have been in the world of online marketing for quiet some time and I found it strange that a company in generating a pre-launch buzz relied exclusively on paid reviews. Exception being that one commercial where woman Realtor gets killed.
They could have probably generate more attention if they spend the money they paid bloggers on two or three PRWeb press releases.
Jay thanks again. Your post is quite innocent really. I guess I am overreacting. But, I still have chills going down my spine every time I read the C&D.
Jay Thompson
March 18, 2008 at 11:09 am
In a stroke of irony, I got a voice mail from a Greg Rider this morning (in violation of Do Not Call rules no less). Greg was from “ePerks Real Estate” and was “in need of a Phoenix agent – lot’s of opportunity!”
I guess the other 20 Phoenix agents they have signed up don’t need any opportunities.
I won’t be returning Mr. Rider’s call.
Or, maybe I will…. 😉
Vlad
March 18, 2008 at 11:27 am
Here in NJ they did not manage to get that many agents…. In fact I think so far there are only two in central part of the state. But then again NJ is very small comparing to other states.
Good luck Jay if you are going to give them a try. 😉
Frank Jewett
May 26, 2008 at 2:15 am
My only experience with ePerks was when I was given the opportunity to write a paid review for them on my blog.
Paid reviews in blogs?! That would explain some of the absurdly positive comments we see bobbing in the blogosphere surf. I assumed it was more like “I’ll put you over and put myself over for finding you in the process.” I didn’t realize people would prostitute their blogs by writing paid reviews without notifying their readers. I would think a revelation like that would cost a blogger his or her credibility.
Vlad
May 26, 2008 at 8:56 am
@Frank Jewett
Frank, many bloggers are doing great jobs with paid reviews. Although I personally am against the paid reviews after this whole fiasco with ePerks. I know a single mom who makes extra cash with the paid reviews and she did not loose any credibility as far as I am concerned.
Jay Thompson
May 26, 2008 at 8:58 am
Frank –
I can’t speak for anyone else, but I did a total of three paid reviews on my blog — 3 out of over 1,000 posts. And all were clearly disclosed and identified as such.
Every service I’m aware of that “brokers” paid reviews requires the writers to disclose that it is exactly that.
I don’t do them any more, because I great weary of sifting through all the requests. But I don’t see anything wrong with doing them as long as they apply to and offer your readership something and are fully disclosed.
Frank Jewett
May 26, 2008 at 11:09 am
Jay, I appreciate that you also believe in full disclosure. Yesterday I found an old “prediction” somewhere else that brokers would probably pay $395 a year for Zolve without a second thought. My first thought was “how could anyone be so wrong”, then I saw the comment about paid reviews and I started to wonder if that blogger was trying to hoodwink his audience. Talk about unbridled optimism!
Dennis Pease
May 28, 2008 at 11:44 pm
ePerks and the paid bloggers they use is funny the more you look into it. After I wrote my blog at ActiveRain about their Lawsuit against Vlad I googled ePerks with my stumbleupon tool bar on and I see they had been stumbled, so I checked it out and laughed my ass off. The person that stumbled ePerks with a glowing report is a 25 year old guy in Malaysia.
What the heck does he know about a real estate lead generation company in the US. Nothing I’m sure except that he was paid for his stumble. LMAO, what do you think they pay bloggers in Malaysia? 10 cents maybe? Lol
C Richey
July 15, 2008 at 12:12 pm
So they paid for a Stumble as well? Interesting. I’ve had several of my posts Stumbled and while you do get traffic, the bounce rate usually isn’t that great. I think the lawsuit has done more damage to ePerks then everything else combined.
Vlad
July 15, 2008 at 1:02 pm
@C Richey
No they did not pay anyone to stumble their website. In fact, most of the reviews on stumble are not favorable to them either. I ma not sure they even know what SumbleUpon is.
Dennis Pease
July 15, 2008 at 10:30 pm
Vlad, I disagree, as I posted above their first stumble was by a 25 year old guy in Malaysia giving them a glowing report that sounds like it is right off there sales script. Definitely a paid stumble.
Vlad
July 15, 2008 at 11:27 pm
Dennis, I thought C Richey was referring to me in his comment. They guy from Malaysia might have been a blogger like myself who wrote a paid review for them and then decided to give them an extra bonus in a form of a stumble. Can it be looked at as bought stumble? I don’t know if I would go that far. Besides, one stumble did nothing in terms of traffic. SumbleUpon is only good if you like to engage in it’s community.