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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 to turn your complaint mindset into constructive actions

(EDITORIAL) Everybody knows someone who complains too much. While being open is important for mental health, constant bellyaching is not.

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Everybody knows someone who complains too much. While being open is important for mental health, constant bellyaching is not, so here are a few tips on turning your complaints into constructive actions.

It’s important to understand the difference between “complaining” and “addressing.” Talking about problems which mandate discussion, bringing up issues slated to cause larger issues down the line, and letting your boss know that you have the sniffles all fall into the latter category due to necessity; complaining is volitional, self-serving, and completely unnecessary in most contexts.

Complaining also puts you in an excessively bad mood, which may prevent you from acknowledging all the reasons you have not to complain.

Another point to keep in mind is that complaining occasionally (and briefly) isn’t usually cause for ostracization. Constant or extensive complaining, however, can lead others to view you as a largely negative, self-centered person — you know, the kind of person literally no one actively seeks out — which is why you should focus more on redirecting that negative energy rather than using it to remind your barista why they gave up their dream of becoming a therapist.

Complaining stems from two main sources: the need to be validated—for example, for others to know what you’re going through—and the need to be comforted. Addressing a chronic complaint mindset, then, is largely about validating and comforting yourself. This is a simple solution which nevertheless can take years to manifest properly, but you can start by doing a couple of things differently.

“Focus on the positive” is perhaps the hokiest advice you’ll get from anyone, but it works. In virtually any situation, you can find a positive aspect—be it an eventual outcome or an auxiliary side-effect—on which you can concentrate. Think about the positive enough, and you’ll talk yourself out of complaining before you’ve even started.

It’s also good to remember that no one, no matter how much they care about you, can handle constant negativity. If you find yourself constantly hitting people with bad news or tragic personal updates, try mixing up the dialogue with some positive stuff. That’s not to say that you can’t be honest with people—friends, family, and colleagues all deserve to know what’s going on in your life—but make sure that you aren’t oversaturating your listeners with sadness.

Lastly, keep your complaining off of social media. It’s all too easy to post a long Facebook rant about being served cold pizza (no one likes cold pizza on day one), but this just results in your loding a complaint reaching a larger number of people than vocalization ever could. If you have to complain about something in earnest, avoid doing it anywhere on the Internet—your future self will thank you.

Being honest about how you feel is never a bad thing, but constant negativity will bring down you and everyone around you. If you can avoid a complaint mindset as a general rule, you’ll one day find that you have significantly less to complain about.

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Opinion Editorials

What Musk’s tweets say about toxicity of modern work culture

(EDITORIAL) Musk is an inspiring figure, but his recent tweets speak volumes of what’s wrong with work culture, especially in tech.

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Oh, Elon. Haven’t you learned yet? No? Your beautiful, sweet, brilliant mind. I don’t know whether you need a hug or a stern talking to — maybe both — after your crazy, erratic tweets, but Elon Musk’s Crazy Tweet of the Week™ shows a huge problem growing in the tech industry and modern work culture.

In case if you missed it, here’s what went down:

1. On Sunday, the WSJ wrote that Tesla is the “hot spot” of young job seekers and engineers, in spite of or even because of Musk.

2. Par for the course, Musk responded on Twitter with the following comments:

3. Twitter exploded with replies such as these:

If anything, this opens a discussion on a toxic tech — and honestly, American — work culture. But we’ve written about that. It seems like we’re slowly learning that 40 hour workweeks are often okay, and here’s why:

Elon isn’t normal and we shouldn’t compare ourselves.

The thing is, Musk does get more done in the average workweek than a normal person. But this is because he’s brilliant and has figured out ways to beat the system, and he has a million different ideas that other people are implementing. Elon shouldn’t compare himself to the average person, because, well, he isn’t. It’s clear he’s brilliant (and knows it), so we shouldn’t compare ourselves to him, either.

Something we can take from him: learning to automate the remedial tasks and spending our time to maximize efficiency and not waste time. And for the average person, that probably means getting a good night’s sleep or eating well (that means not just drinking Soylent. Looking at you, developers!) so you can actually be effective the next day at work or with your loved ones.

Improve your efficiency.

Are there productivity tools that you haven’t been using that you can? Are you tracking your time and how you’re spending it? If you’re an entrepreneur, or better yet, solopreneur, are there small tasks that take a lot of time that you can do better, faster, stronger? If you need some ideas, check out the years of tips accumulated here on AG.

Elon knows where his strengths don’t lie, and he has a lot of people doing those jobs. So take some of the things he does, but take it with a grain of salt. But unlike Musk, treat your employees well, don’t burn them out, and empower them to do the tasks you don’t do as well.

Most “average” humans have normal responsibilities: families, maintaining a healthy lifestyle (this means sleeping well, eating well, and exercising), and maintaining balance with other interests that make us better employees, bosses, and entrepreneurs. Remember: you’re a human being, not just a worker bee. Don’t let Elon’s Tweetstorms lead you astray.

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How to crush your next remote job interview

(OPINION EDITORIAL) Working remotely is becoming more and more popular. Learn how to excel during a remote job interview.

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As the career landscape continues to change, so does the way in which we interview. With an increase in remote workers, there is also an increase in video interviews.

What immediately comes to mind for me was three years ago when I had a video interview with the fabulous COO of The American Genius. Since the company is based out of Austin, and I’m in Chicago, we had a video chat to see if I’d be a good fit for the company.

While it took some of the pressure off being able to be in my own home for the interview, there was definitely the con of…being in my own home for the interview. Fear of any noise or interruption posed as a slight distraction.

Like an in person interview, there are some pressures that go along with a video interview. The main one being that you need to sell yourself as an extremely responsible individual who can handle the freedoms and rigors of remote work.

Employers are looking for accountability in their remote workers. You must be able to execute your tasks in with a heightened amount of self-discipline.

This can be done through use of time trackers and proactive reporting. Keeping track of each task you do, and the time spent doing it, will provide something tangible for your employer. Be sure to explain during the interview that this is something you will provide to the employer.

Next, because there is a change in environment, and arguably a change in responsibility level, the questions asked during the interview may be different from your standard interview.

A few questions that may pop up to keep in mind: what hours will you be working? What is your remote experience like? Is this something you’re seeking for supplemental work, or trying to do full-time? What is your home workspace like? What tools do you use to keep yourself on task? What is your preferred method of payment?

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Working remotely can be a whole different beast in terms of proving yourself to your employer. Having yourself fully prepared for an interview can help start you off on the right foot.

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