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BioMarin CEO calls terminal cancer patient a “spoiled petulant brat”

BioMarin pharmaceutical continues to astonish, not by their move to refuse a dying cancer patient life-saving treatment, despite the FDA’s direct approval to do so, but by their CEO writing aggressive emails laced with insults and condescension. Not advisable to any company, whether in a moment of crisis or not.

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Jean-Jacques Bienaimé, Chief Executive Officer, BioMarin Pharmaceutical

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:

email1


email2

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:

email3

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:

email

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.

medical

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.

David Holmes, owner of Intrepid Solutions, has over 20 years experience planning for, avoiding, and solving crises in the public policy, political, and private sectors. David is also a professional mediator and has worked in the Texas music scene.

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16 Comments

16 Comments

  1. Deanna L. Kuykendall

    September 24, 2013 at 5:04 pm

    David, you hit the nail on the head! BioMarin has botched Andrea Sloan’s request for compassionate use from the get-go. It’s been like watching the movie Dumb & Dumber. How can a global pharmaceutical firm get it so wrong? Saying yes to Andrea Sloan’s request should have been an easy decision. I agree with you, the Board of Directors needs to sideline the CEO and CMO and let a crisis management expert get this derailed PR disaster back on track. And before that, tell Andrea Sloan it is going to give her access to the drug her doctors believe is her last hope.

  2. Terry Lynne Stulik

    September 24, 2013 at 5:35 pm

    BIOMARIN – YOUR CEO NEEDS TO GO! Investors and Board will agree!
    BioMarin CEO calls terminal cancer patient a “spoiled petulant brat” https://agbeat.com/business-marketing/public-relations/biomarin-ceo-email-meltdown/ … via @agbeat- GET RID OF BIENAIME, BIOMARIN!

  3. Dorothy Ayer

    September 24, 2013 at 10:22 pm

    Biomarin wouldn’t need a PR firm if they’d can their spoiled petulant CEO. And THEN put the investors big bucks behind them and help this young woman.

  4. justme

    September 24, 2013 at 11:13 pm

    I wish someone would interview Andrea’s doctor at MD Anderson again. How did this drug, tested on 28 women, results unpublished/unknown, become her ‘last hope’ for treatment, according to him? Seriously, can her doctor please explain this?

    • David Holmes

      September 25, 2013 at 12:53 pm

      The results have been published; you can easily find them in a Google search. And, the CEO and CFO and been going around telling everyone what the results have been. If you would like audio of them saying precisely and scientifically what the results were, I will be happy to send that to you.

  5. Dorothy Ayer

    September 25, 2013 at 11:27 am

    Food and Drugs Administration a lot of times just rubber stamp test results. Biomarin’s constant red herring and inappropriate comments and responses is bringing FULL attention from the FDA. I hope the FDA searches them with a magnifying glass; and I mean ALL OF THEIR DRUGS THEY HAVE IN DEVELOPMENT. In fact, I would encourage people to start copying their letters they send to Biomarin and forward them to the FDA, requesting a CLOSER look to all of their in-testing drug trials and manufacturing.

  6. MarkBMorrow

    September 26, 2013 at 8:10 pm

    I guess Mr. Bienaime would sound like a spoiled petulant brat if he was pleading for the chance to save himself from certain death.

  7. JoshGrot

    September 27, 2013 at 11:22 am

    What’s so particularly sad and frustrating about situations like this is that the public can’t just protest with their wallets and avoid using the company’s products to send a meaningful message back to the company that would change its behavior.

    It seems that big pharma companies with de facto monopolies on potentially life saving medications can do just about anything they want as long as they get the drug to market (and it proves to be effective in saving lives).

  8. Shelly Curran

    September 30, 2013 at 11:29 am

    Problem number one is that he’s French. Problem number two is that he has writers remorse and then lies about it. How is this man a CEO of anything? The woman is dying so who cares if the drug is experimental. She wants a chance. It’s not like her family is going to sue him if she dies, duh!!

  9. David Holmes

    October 1, 2013 at 6:53 pm

    I don’t completely understand this process, but they don’t pay for the trials – other entities do. So it may be as simple as that a breast cancer focused entity stepped up first.

  10. Ellis Meret

    October 3, 2013 at 2:01 pm

    When your CEO starts rattling off replies with insulting, rude, ignorant, and condescending language, that’s THE sign your company needs a PR firm. lol. And all those leeches do anyway is distract the public so companies can rub their hands together in the usual way.
    Money and power turns people into corrupt scumbags. So does this corporate culture in general it would seem.

  11. jan l

    October 4, 2013 at 9:21 am

    took the words right out of my mouth! this man has cancer of the heart that has metastasized to his conscience.

  12. Miles Howard

    October 9, 2013 at 1:25 pm

    Wow. I wonder what would Jonas Salk say?

  13. paperdetective

    October 26, 2013 at 7:17 am

    I have communicated by email with Biomarin in the last few weeks to try get information on their PARP inhibitor drug for my type of patients.It was terrible. They took their sweet time to respond and first had some kind of $10 an hour ignorant brat answer with canned useless responses and, when I pushed back, they took even more time to respond and it was just a ‘don’t bother us’ brush off again.

    Never had that before with any other company, researcher or doctor. Those all responded with informative helpful replies, which I could pass on to fellow patients to help. With some I’m still in touch regularly.

    From the trail of BioMarin’s email headers, I can see they have outsourced their communications. Not to their advantage though. It should not be outsourced, since someone who understand the highly technical subject matter and is committed to his company and understands cancer patients and researchers, should answer. Instead we get bureaucratic answers as if we were talking to government insteda of a business with a profit motive.

    It makes one wonder if their product is really that promising. If a vendor does not love the customers which he is going to sell his product to, which is how BioMaribn sounds, then why are they in this business at all?

  14. Pam Clark

    October 31, 2013 at 7:57 pm

    With BioMarin involved (as it should be) with its clinical trials, I suspect that their patient sampling might not be appropriate, and with all of the publicity their data will be highly scrutinized. However, as long as they have control over the initial population sample being tested, they can still present inaccurate data to the FDA. Sloan presents what would be an unknown (but perhaps in this case – a known condition with lots of documentation and tests). I think BioMarin’s CEO is freaking out because their product will not pass muster in the real world.

    Their Q1 earnings for 2013 (documented conference call:)
    Naglazyme, Q1 2013 sales of $69.4 million
    Kuvan, sales of $37.6 million

  15. Pingback: Dead On Arrival: Federal "Compassionate Use" Leaves Little Hope for Dying Patients - Right to Try - National Movement

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Opinion Editorials

How the Bullet Journal method has been hijacked and twisted

(EDITORIAL) I’m a big fan of the Bullet Journal method, but sticker-loving tweens have hijacked the movement. Worry not, I’m still using black and white bullet points with work tasks (not “pet cat,” or “smile more”).

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It’s taken me some time to come around to the Bullet Journal method, because it took me some time to fully understand it (I have a tendency to overthink simplicity). Now that I understand the use, I find it very beneficial for my life and my appreciation for pen-to-paper.

In short, it’s a quick and simple system for organization tasks and staying focused with everything you have going on. All you need to employ this method is a journal with graph or dotted paper, and a pen. Easy.

However, there seems to be this odd truth that: we find ways to simplify complicated things, and we find ways to complicate simple things. The latter is exactly what’s happened with the Bullet Journal method, thanks to creative people who show the rest of us up.

To understand what I’m talking about, open up Instagram (or Pinterest, or even Google) and just search “bullet journal.” You’ll soon find post after post of frilly, sticker-filled, calligraphy-laden journal pages.

The simple method of writing down bullets of tasks has been hijacked to become a competitive art form.

Don’t get me wrong, I like looking at this stuff because I dig the creativity. But, do I have time to do that myself? No! For honesty’s sake, I’ve tried just for fun and it takes too much damn time.

With this is mind, this new-found method of Bullet Journaling as an art is something that: a) defeats the purpose of accomplishing tasks quickly as you’re setting yourself back with the nifty art, and b) entrepreneurs, freelancers, executives, or anyone busy would not have time for.

Most of these people posting artistic Bullet Journal pages on Instagram are younger and have more time on their hands (and if you want to spend your time doing that, do you, man).

But, it goes against the simplistic method of Bullet Journaling. The intent of the method.

And, beneath the washi tape, stickers, and different colored pens, usually lies a list of: put away laundry, feed cat, post on Insta. So, this is being done more for the sake of art than for employing the method.

Again, I’m all for art and for people following their passions and creativities, but it stands to reason that this should be something separate from the concept of Bullet Journaling, as it has become a caricature of the original method.

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Opinion Editorials

The perfect comeback to that earnest MLM guy you meet at every coffee shop

(EDITORIAL) We’ve all been cornered by someone that wants to offer us financial freedom for joining their pyramid scheme, but we typically freeze or just reject them. There’s another way…

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The following editorial was penned by Chris Johnson who offers the perfect comeback to that stranger who approaches you in Starbucks or that person you haven’t talked to since high school that wants to discuss your financial freedom:

Last week, I was at Starbucks, doing some marketing work. This was apparent to all who could view my laptop by the big 72 type “Marketing” headline that I was working on in my browser.

A man sharing a table, with no apparent laptop of his own, was taking interest in what I was doing. He was mid-40s and he was ambiently stalking and sizing everyone around him up. He was swallowing and always “about to talk.”

Finally, after I looked up to collect my thoughts, he broke my reverie.

“Are you in marketing?”

See, our man (Justin was his name) had just stated a business, an e-commerce business. He was vague on his details.

I knew where this was going. We all know.

Anyone that’s ever worked from a Starbucks has met Justin.

Justin mentioned a couple of his relatives, also with businesses. And, without asking what type of clients I serve, told me that they’d be a great fit for me. He’d love to introduce me, if we could just exchange contact info.

I knew exactly what he was doing. As God as my witness, I knew the only place where this interaction would possibly go. I wasn’t, not for a minute, fooled by the promise of referrals that would never happen.

Of course, I give it to him, not because I think there’s any hope that this will work out. But because I want to know. We exchange texts, and I save his contact info.

He excuses himself and gets into his 2002 rusty Kia, and drives off.

The next day, I get a call with the ID: MLM GUY STARBUCKS 2019.

“Chris, we met at Starbucks,” he says, “This is Justin. And I was wondering if you were open to financial opportunities for your family.”

Well, knock me over with a feather. This was such a surprise.

Without a plan in my head, I said “Justin, are you in the Amway organization? Because if so, I have been waiting for your call.”

Justin confirmed that yes, he was in Amway. And he was really glad!

“Justin, I’ve got some great news for YOU, would you like to hear about it?”

“Sure,” he goes.

“OK, well, you have to be open – and committed – to improving your relationship with Amway. Is that something you’re open to right now?”

“Yes,” he said, “Definitely.”

“Great. So let me tell you about what I do with the Amway people I meet. See, I’ve made a really profitable career out of helping them, and it’s turned into the focus of my life.” This is, of course, a lie, but we were even because Justin got my phone number on the pretext of referring me business.

“OK, so the deal is this. One of the problems with Amway is that it turns you into someone that has to monetize all of your family and friends. And when that happens, you become less about the relationship, and more about the money. Has that happened to you?”

“Yes. Yes it has.” Justin admits.

“Yes, great, this is what we’re hearing.”

The words tumbled out of my mouth: “See all over America there are Amway distributors, just like you. They are chained to various Starbuckses. This is the old model, there’s simply no freedom.

They have to fight tooth and nail to get appointments and most of ’em don’t go anywhere. For most of the Amway owners, this isn’t working once they pitch all their friends and all their family.

So I’ve created an organization called Amway Freedom. All you have to do is sign up. By signing up, you agree to automatically pay $5.00 per month to me, to be free of Amway.

But the REALLY good news is that you can sign OTHER people up, and keep half of the money for your family and your freedom. And when they sign up, half goes to support the reps, and the other half goes to support your opportunity!

From what I hear, over 1.5 million Americans signed up for Amway at some point. Tell me, Justin, if you got just 1% of that market – 15,000 people to pay you $5.00 a month without you having to do anything, would that change your life?

Would $75,000 per month change your life?”

Justin said “Um, well, this isn’t really what I was think-”

“Look Justin, this isn’t for everyone. I know that. Most people won’t be able to take advantage of this opportunity. They only think of the problems. They can’t imagine how this could work, a business with no merchandise and freedom.

But, Justin, you’re helping people get free of the endless random meetings… the Starbucks bills… the gas expenses. You’re turning your story of struggle into a story of success. Are you ready, Justin?

This is my business,” I said, “And this is what I want for you, Justin. Are you ready to join your challenge and fight for the freedom of 1.5 million people that have tried Amway?”

“Um…” Justin said. “I just don’t.”

“I see. This might not be working for you, Justin, and that’s 100% OK. Take all the time you need. But, if you sign up today, I’ll offer you the EXCLUSIVE market rights to help free people from Younique, Herbalife, Infinitus and over 30 other household brands. That makes a market – just in America – of 20 million Americans! Doesn’t that sound great, Justin? If you captured just 1% of that, that’s 200,000. And that business would earn 1 million every MONTH.

All without products to store, all while helping people.

Will you be paying with a Visa or Mastercard?”

Justin paused for a moment. “This was a waste of my time,” he finally said.

“You don’t really have a business!” he spat.

Well done, Justin, well done indeed.

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Opinion Editorials

Culture can be defined by what employees don’t say

(OPINION) What your employees say defines your business. What your employees don’t say defines your culture.

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Whether the boss realizes or not, employees – the folks who often manufacture, handle, and sell the products themselves – can see sides of the business that management could easily overlook, including potential risks and improvements. So how do you make sure your employees are speaking up? A new study by Harvard researcher Hemant KakkarSubra Tangirala reveals that when it comes to speaking up, your company culture is probably either encouraging or discouraging it.

Tangirala wanted to compare two theories as to why employees choose to stay quiet when they could share their worries or ideas with company management. The “personality perspective” presumes that shy, reticent employees simply don’t have the gumption to speak up; therefore, the way to get more perspective from your employees is to make a point to hire extroverted people.

Meanwhile, the “situational perspective” posits that the company culture may either be encouraging and even expecting employees to speak up or discouraging it by creating an environment wherein employees “fear suffering significant social costs by challenging their bosses.”

In order to test these two theories against one another, Tangirala surveyed nearly 300 employees and 35 supervisors at a Malaysian manufacturing plant. First, the survey measured each employee’s “approach orientation,” that is whether or not, all things being equal, they had a personality more inclined to speaking up or staying mum. Next, employees were asked whether they thought their input was expected, rewarded, or punished. Lastly, supervisors were asked to rank the employees as to how often they spoke up on the shop floor.

The survey showed that both personality and the work environment significantly influenced whether or not an employee would speak up – however, it also showed that environmental factors could “override” employees’ natural inclinations. In other words, if employees felt that they were expected or would be rewarded for speaking up, they would do so, even if they aren’t naturally garrulous. On the other hand, even the most outspoken employees would bite their tongues if they thought they would be punished for giving their opinion.

The study also identified two major areas wherein employees could be either encouraged or discouraged from sharing their perspective. First, employees can be encouraged to suggest improvements or innovations that will increase workplace safety and efficiency. Secondly, employees should be expected to speak up when they witness dangers or behaviors that could “compromise safety or operations.”

Although the study was limited, it seems to point towards the importance of creating a workplace culture wherein your employees are rewarded for speaking up. Doing so could potentially provide you with invaluable insights into how to improve your business – insights that can only come from the shop floor.

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