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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

Study says women need to be seen as “warm” to be considered confident

(EDITORIAL) A new study reveals that despite progress, women are still successful when they fall into a stereotype. Let’s discuss.

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About 15 years ago, I took a part-time job in a mental health clinic handling bookkeeping and billing. I had absolutely no idea what I was doing, but I attacked the job with what I felt was confidence. For the first few days, I simply felt as if I was an imposter. I kept asking questions and pushing forward, even though I didn’t make much progress. Within just a few days, I felt the hostility of the office manager.

It got progressively worse, and I couldn’t figure out what the heck I’d done to make her so confrontational with me. I thought I was pleasant and respectful of her position, and I was getting along with the other employees. When I talked to our boss, I was told that I intimidated the office manager. HUH? Me? Intimidating? I was a complete mess at the time. I could barely put together a business casual wardrobe. My emotional health was so fragile that I rarely went anywhere new. And she found me intimidating?

Researchers have been studying how people judge others. Susan Fiske, researcher out of Princeton, found that competence and warmth are two of the dimensions used to judge others. Based on that research, Laura Guillén, Margarita Mayo, and Natalia Karelaia studied the competence and warmth at a software company with 236 engineers.  Guillén and her team collected data at two separate times about these engineers and their confidence and influence within the organization.

They found that “men are seen as confident if they are seen as competent, but women are seen as confident only if they come across as both competent and warm.

Women must be seen as warm in order to capitalize on their competence and be seen as confident and influential at work; competent men are seen as confident and influential whether they are warm or not.”

We encourage women to be confident, but based on current research, it may not be enough to close the gender gap in the workplace. A woman must be seen as helpful and dedicated to others to have the same influence as a man. As a woman, it’s easy to be seen as the #bossbitch when you have to make tough decisions. Those same decisions, when made by a man might be considered just “business as normal.”

I guess the lesson is that women still have to work twice as hard as men just to be seen as equals. I know that I have to work on empathy when I’m in an office environment. That office manager isn’t the only person who has thought I’m intimidating. I’ve heard it from it others, but you know what?  As a self-employed writer, I’d rather be seen as undeterred and daunting than submissive and meek.

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“Starting a business is easy,” said only one guy ever

(OPNION EDITORIAL) Between following rules, finding funding, and gathering research, no business succeeds without lifting a finger.

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While browsing business articles this week, I came across this one, “Top 10 Business Ideas You Can Start for Free With Barely Lifting a Finger.” These types of articles make me mad. I can’t think of many successful freelancers or entrepreneurs who don’t put in hours of blood, sweat and tears to get a business going.

The author of the article is Murray Newlands, a “VIP Contributor.” Essentially, he’s a freelancer because he also contributes to Forbes, HuffPro and others. He’s the founder of ChattyPeople.com, which is important, because it’s the first business idea he promotes in the article.

But when I pull up his other articles on Entrepreneur.com, I see others like “How to Get Famous and Make Money on YouTube,” “Win Like A Targaryen: 10 Businesses You Can Start for Free,” and “10 Ventures Young Entrepreneurs Can Start for Cheap or Free.”

I seriously cannot believe that Entrepreneur.com keeps paying for the same ideas over and over.

The business ideas that are suggested are pretty varied. One suggestion is to offer online classes. I wonder if Newlands considered how long it takes to put together a worthy curriculum and how much effort goes into marketing said course.

Then, you have to work out the bugs, because users will have problems. How do you keep someone from stealing your work? What happens when you have a dispute?

Newlands suggests that you could start a blog. It’s pretty competitive these days. The most successful bloggers are ones that really work on their blog, every day. The bloggers have a brand, offer relevant content and are ethical in how they get traffic.

Think it’s easy? Better try again.

I could go on. Every idea he puts up there is a decent idea, but if he thinks it will increase your bottom line without a lot of hard work and effort, he’s delusional.

Today’s entrepreneurs need a plan. They need to work that plan, rethink it and keep working. They have to worry about liability, marketing and keeping up with technologies.

Being an entrepreneur is rewarding, but it’s hard work. It is incredibly inappropriate and grossly negligent to encourage someone to risk everything they have and are on the premise of not lifting a finger.

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Opinion Editorials

New age stranger danger: teaching kids about AI

(OPINION EDITORIAL) The world is changing and so is technology. As tech changes so must we, in teaching kids about the dangers about AI.

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When I was younger, when my siblings and I would come home from school, we were required to nourish our minds for an hour (study, homework, read, do math practice, whatever we were feeling that day) and then we were banished from the house until dinner.

We had to go outside and create our own fun. We rode bikes to friends houses, we went “fishing” in the creek, sometimes before we left the house we’d search the couch for loose change and go to our favorite corner store and share a bag of skittles.

Our neighborhood was a safe one — it was one of those ideal 90s neighborhoods where our house was seated on the end of a cul-de-sac so there was little traffic and there were enough kids on the street to field two kickball teams.

Each parent on the street was allowed to reprimand us and there were rarely any locked doors. As a 10 year old it felt like ultimate freedom. But, with that freedom came a very important lesson in strangers and what to do if we were ever approached by one.

I’m sure stranger danger is still a thing taught by parents and schools alike but we went from don’t talk to strangers online or get in strangers’ cars to getting online to request a stranger to drive us somewhere.

With the advancement of technology has come a readiness to bring strangers in (/near / to) our homes. The most invitations coming from those personal assistants many homes can’t seem to function without.

Alexa, Google Home, Bixby or whatever assistant you may use are all essentially strangers that you are willingly bringing into your home.

Just yesterday I had a conversation with a college kid that didn’t know that the microphone on those things are always on — as such is true with the Facebook, Instagram and Facebook Messenger apps.

In a recent article from Rachel Botsman (BOTSman, hmmmm), she describes the experience her three year old had with an Alexa.

Over the course of the interactions, her daughter asks the bot a few silly questions, requests a few items to be bought, asks Alexa a few opinions, she ultimately sums up her daughter’s experience as saying, “Today, we are no longer trusting machines just to do something, but to decide what to do and when to do it. The next generation will grow up in an age where it is normal to be surrounded by autonomous agents, with or without cute names.”

I’m not a mother and I’m definitely old enough to be extremely skeptical of machines (iRobot anyone?) but the effects smart bots will undoubtedly have on future generations have me genuinely concerned. Right now it seems as harmless as asking those assistants to order more toilet paper, or to check the weather or to see which movies are screening but what will it become in the future?

A MIT experiment cited in the Botsman article 27 children, aged between three and 10, interacted with Alexa, Google Home, Julie (a chatbot) and, finally, Cozmo (a robot in the form of a toy bulldozer), which are all AI devices/ toys.

The study concluded that almost 80 per cent of the children thought that Alexa would always tell the truth.

Let me repeat that — 80 PERCENT OF THE KIDS BELIEVE THAT THE AIS, CREATED BY COMPANIES WHO WANT TO SELL PRODUCTS, WILL ALWAYS TELL THE TRUTH.

The study went on to conclude that some of the children believed they could teach the devices something useful, like how to make a paper plane, suggesting they felt a genuine, give-and-take relationship with the machines.

All of these conclusions beg the question, how can we teach kids (and some adults if we’re being honest) about security and privacy in regards to new technology? How do we teach kids about commercialism and that as innocent as they may seem, not every device was designed altruistically?

We are quickly approaching an age where the strangers we introduce our kids to aren’t the lurkers in the park with the missing dog or the candy in the van, but rather, a robot voice that can tell a joke and give you the weather and order +$70M worth of miscellaneous stuff.

So now, it’s on us. Children of our own or not, we have to start thinking about best practices when it comes to teaching children about the appropriate time to trust in a computer. If the 5 year olds with smart devices are any indicator, teaching kids to be stingy with their trust in AIs will be an uphill battle.

This story was first published here in October of 2017.

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