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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:

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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:

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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:

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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.

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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

Disrupting the idea that tech is the disrupter of modern business

(OPINION EDITORIAL) In a world of streaming, apps and have-it-now, it is easy to think of technology as a disrupter. But is that the issue or the symptom of a bigger issue?

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Customers matter

Amazon didn’t kill the retail industry, they did it to themselves with bad customer service. Netflix did not kill Blockbuster, they did it to themselves with ridiculous late fees. Uber did not kill the taxi business, they did it to themselves by limiting the number of taxis and with fare control. Apple did not kill the music industry, they did it to themselves by forcing people to buy full-length albums. AirBNB did not kill the hotel industry, they did it to themselves by limited availability and pricing options. Technology by itself is not the real disrupter.

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Being non-customer-centric is the biggest threat to any business. Not my words, they’re rad. That’s Davis Masten, making an elegant and effective argument for the disruption business model. Let’s get less concise.

User experience

Mr. Masten absolutely isn’t wrong. Every success story he lists got its customers based on a smooth, convenient user experience, and I’ll wager everybody reading this has a hilarious horror story about at least one of the failures.

He does undersell tech a bit. The music industry didn’t force people to buy full albums. You could buy all the singles you wanted. They were just a pain in the posterior to sort and store. Then, iTunes. If AirBNB is killing hotels it’s doing it darn slowly (which I guess might be worse?) and Netflix coexisted with Blockbuster until the former went streaming.

But that’s a quibble. Even in cases where the new model didn’t disrupt the old one until certain tech was in place, that tech was invariably in the service of a convenient, cost-effective user experience. That’s Mr. Masten’s point. Whoever wins at that, wins. Truth.

The question I really want to address: what then?

What then?

That’s a question the disruption business model has a bad habit of not answering. Well, I mean, there’s the Uber answer, the Uber answer being “behave contemptibly for years on end until your own shareholders kick you out despite you making them money.” Never give the Uber answer.

It is not a good answer.

For folks looking to be Travis Kalanick in 2013 without being Travis Kalanick in 2017, a level of responsibility is called for. As Mr. Masten points out, “disruption” usually means a smoother, simpler user experience beating the tar out of an older, clunkier one. That’s great!

It also comes with collateral damage.

Terms of employment

The ride-sharing model – and this is everybody, I’m not just picking on Uber – depends on drivers being legally self-employed. AirBNB depends on hosts not having to meet hotel regulations, and guests not expecting them. Put differently, if Uber and Lyft had to pay a living wage and offer benefits, or AirBNB hosts had to meet hotel cleanliness standards out of pocket, those services would keel over and die in a week.

That cash-in-hand approach absolutely makes things simpler for the company and the customer.

To be especially callous, it may also encourage a better user experience because workers are broke and terrified of losing their jobs, unlike, for instance, unionized cab drivers.

It’s also precarious in the extreme, and not just for employees. The Uber/Netflix model is a confluence of easy user experience and the technology that empowers it. That being the case, there will be a new “disruption” every time the tech gets measurably better. Conservatively, we’re ten years out from self-driving cars. Executives at Uber, Lyft, Amazon, Grubhub and every other “disrupter” that uses vehicles – so, all of them – would probably like that to be five years. Their drivers probably feel otherwise.

That’s the Uber error (I have now resumed picking on Uber).

They missed that “customer-centric” means more than “convenient.”

It also means “up to the customer’s standards of good business.” They couldn’t manage that even when it came to their own internal culture, and they paid for it with a public scandal, a non-negligible market segment who refuse to use their brand on principle, and “Uber, but for…” becoming a punchline.

Sustainability of disruption

The disruption model, which was synonymous with fast profits from streamlined processes, is rapidly becoming synonymous with fast failure, toxic corporate culture and horror stories of low pay and poor treatment of customers and employees alike. For those of us ancient enough to remember it recalls the change in public perception of the term “dot-com,” and seriously, short of literal Internet access, anything affiliating your business with the dot-com bubble is not your friend.

That’s still reversible, and Mr. Masten provides a superb starting point.

“Disruptive” companies generally do their disrupting by streamlining user interaction, and whether you’re writing an app or running a bank, user interaction is the most important thing.

Customer-centric

But user interaction isn’t limited to purchasing your service, and Econ 101 notwithstanding, customers buy based on more than who offers most for cheapest. In the frighteningly transparent 21st century, being customer-centric means addressing human values along with economic ones, guaranteeing that when you profit, so do your customers and employees. If your standards don’t stand up to the people who buy what you’re selling, you will not be selling it long.

That’s what “customer-centric” means. You can’t disrupt forever. Eventually, you have to build.

#Disrupters

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Opinion Editorials

How to impress people by being stupid (and when not to)

(EDITORIAL) Did you know that admitting you don’t know something can be a respectable business move? But in other situations, you better avoid it.

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You want to impress people, right?

My first job was at my aunt and uncle’s children’s bookstore, long before it was legal for me to work. My aunt drilled into me the best customer service tips I’ve received in my life. By age 13, I could answer the phone like a pro, help an aimless mother compile a bevy of meaningful gifts based on her child’s age, I could operate a register, and knew when to be patient, when to rush, when to jump, and when to sit still.

If I didn’t know the answer to any of her questions or the questions of a customer, “I don’t know” was never an acceptable response. “I don’t know, but I will find out for you right now” sufficed, but “I don’t know” was deemed ignorant, rude, and in some cases, disrespectful.

42Floors.com Founder, Jason Freedman has waxed poetic about the power of the phrase “I don’t know,” noting that when you use the phrase, even if you think you look stupid, it validates everything else you’ve said as honest rather than salesy bullshit, and rather than your just nodding your head in agreement with everything, even when you’re lost. Go read it so the rest of this editorial makes sense…

Contrasting my experience with the phrase with Freedman’s has had my mind in some knots today as I’ve sorted out why I agree with both my aunt and Freedman.

I realized that there is context in which using the phrase is actually appropriate, and advantageous, because looking stupid can actually lend credence to your words, but at some times, it is a lazy response to a request.

So which is better?

So, which is it? Use the phrase liberally, add “but I’ll find out,” or strike it from your vocabulary?

When speaking to a boss or someone that is requesting something from you, take my aunt’s advice and admit that you don’t know but that you will immediately learn the answer. If you are pitching to investors or talking to potential hires or partners, use it liberally to strengthen your other answers. You get the picture.

Freedman is right – there is value in using the phrase, but in some situations, there is value in adding the followup that you’ll find out immediately what the answer is. Both scenarios may make you feel stupid, but they both have a tremendous amount of value and are instant trust builders.

This editorial was originally published in 2014.

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Opinion Editorials

Don’t settle for mediocrity, make a killer first impression

(OPINION EDITORIAL) You don’t get second chances on a first impression so you might as well make your first impression a positive, memorable one.

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Your book cover

It’s been said you only get one chance to make a first impression. This can set the tone for your entire relationship, so it’s important to make a positive impression.

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Whether you’re going for your first job interview or a seasoned veteran in the workforce, it can be daunting to meet someone new who may have your future in their hands. Let’s talk about things you can do to be remembered well.

1. Smile

Smiling puts people at ease. A first meeting can be extremely stressful, but when you smile it decreases your anxiety. Just make sure your smile is authentic. You don’t want to look cheesy or nervous.

2. A strong handshake

Don’t squeeze the other person’s hand too tight, but don’t hold it too limp. You should have a handshake that is somewhere between. There’s an art to a good handshake. Keep your right hand free so you don’t look like you’re fumbling. Stand up to shake someone’s hand. Make eye contact with the other person and smile. Shake from your elbow, not your wrist.

3. Speak clearly and warmly

When you meet someone, break the ice by telling them how nice it is to meet them. Speak with authority. Use a calm and steady voice.

4. Make eye contact

When you look someone in the eyes, it not only conveys confidence, it also demonstrates interest in what they have to say. Be careful it doesn’t come off as staring. Make sure to change your glance occasionally.

5. Watch your body language

Sit up straight. Don’t yawn. Sit still without fidgeting. Give the other person your attention. In fact, it’s a good idea to mirror their body language. It’s a subconscious way of building trust. Don’t draw attention to your flaws.

6. Present yourself well

You may not have an Armani suit, but you can make sure your clothes are clean and pressed. Clean your shoes. Make sure your fingernails are well manicured.

7. Have confidence in yourself

You might be judged on things you cannot change, such as your gender, age or attractiveness. If someone is that shallow, you probably don’t want to work for or be in business with them.

Probably the one best thing you can do when you meet someone is to just be confident in your abilities and talents.

#ImpressionPositive

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