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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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biomarin ceo
biomarin ceo

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

Struggle with procrastination? Check your energy, not time management

(EDITORIAL) Surprisingly, procrastination may not have anything to do with your lack of time management, but everything to do with mental energy.

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making lists in order to combat procrastination

Your author has a confession to make; as a “type B” personality who has always struggled with procrastination, I am endlessly fascinated by the topic of productivity and “hacking your time.”

I’ve tried most of the tricks you’ve read about, with varying degrees of success.

Recently, publishers like BBC have begun to approach productivity and procrastination from a different perspective; rather than packing days full of to-do items as a way to maximize time, the key is to maximize your mental energy through a different brand of time management.

So, why doesn’t time management work?

For starters, not all work time is quality time by nature. According to a study published at ScienceDirect, your average worker is interrupted 87 times a day on the job. For an 8-hour day, that’s almost 11 times per hour. No wonder it’s so hard to stay focused!

Second, time management implies a need to fill time in order to maximize it.

It’s the difference between “being busy” and “being productive.”

It also doesn’t impress your boss; a Boston University study concluded that “managers could not tell the difference between employees who actually worked 80 hours a week and those who just pretended to.” By contrast, managing your energy lets you maximize your time based on how it fits with your mental state.

Now, how do you manage your energy?

First, understand and protect the time that should actually go into deep, focused work. Studies continually show that just a few hours of focused worked yield the greatest results; try to put in longer hours behind that, and you’ll see diminishing returns. There’s a couple ways you can accomplish this.

You can block off time in your day dedicated to focused work, and guard the time as if it were a meeting. You could also physically retreat to a private space in order to work on a task.

Building in flexibility is another key to managing your energy. The BBC article references a 1980s study that divided students into two groups; one group planned out monthly goals, while the other group planned out daily goals and activities. The study found the monthly planners accomplished more of their goals, because the students focusing on detailed daily plans often found them foiled by the unexpected.

Moral of the story?

Don’t lock in your schedule too tightly; leave space for the unexpected.

Finally, you should consider making time for rest, a fact reiterated often by the BBC article. You’ve probably heard the advice before that taking 17-minute breaks for every 52 minutes worked is important, and studies continue to show that it is. However, rest also includes taking the time to turn your brain off of work mode entirely.

The BBC article quotes associated professor of psychiatry Srini Pillay as saying that, “[people] need to use both the focus ad unfocus circuits in the brain,” in order to be fully productive. High achievers like Serena Williams, Warren Buffet, and Bill Gates build this into their mentality and their practice.

Embracing rest and unfocused thinking may be key to “embracing the slumps,” as the BBC article puts it.

In conclusion, by leaving some flexibility in your schedule and listening to your body and mind, you can better tailor your day to your mental state and match your brainpower to the appropriate task. As someone who is tempted to keep a busy to-do list myself, I am excited to reevaluate and improve my own approach. Maybe you should revisit your own systems as well in order to combat procrastination and ensure you aren’t making detrimental last-minute decisions for waiting.

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Opinion Editorials

Follow these steps to change a negative mindset into something of value

(EDITORIAL) Once you’re an expert, it’s easy to get caught in the know-it-all-trap, but expertise and cynicism age like fine wine, and can actually benefit you/others if communicated effectively.

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Man on couch drawing on ipad representative of change to the negative mindset.

In conversation with our friend John Steinmetz, he shared some thoughts with me that have really stuck with us.

He has expanded on these thoughts for you below, in his own words, and we truly believe that any individual can benefit from this perspective:

Over the last few years I have realized a few things about myself. I used to be trouble, always the dissenting opinion, always had to be on the opposite side of everyone else.

Then, I started reading everything I could get my hands on dealing with “how to change your attitude,” “how to be a better team player,” etc.

Over the course of that time I realized something. I realized that there was nothing wrong with me, only something wrong with how I communicate.

Unfortunately, once someone sets the context of who you are, they will never see you as anything else. I was labeled a troublemaker by those who didn’t want to “rock the boat” and that was that.

In my readings of books and articles by some of the most prominent technical leaders, they all had something in common. Paraphrasing of course, they all said “you can’t innovate and change the world by doing the same thing as everyone else.” So, in actuality, it wasn’t me, it was my communication style. For that reason, you have to say it out loud – “I will make waves.”

Physics

There are two things I reference in physics about making waves.

  • “A ship moving over the surface of undisturbed water sets up waves emanating from the bow and stern of the ship.”
  • “The steady transmission of a localized disturbance through an elastic medium is common to many forms of wave motion.”

You need motion to create waves. How big were the waves when the internet was created? Facebook? Just think about the natural world and there are examples everywhere that follow the innovation pattern.

You see it in the slow evolution of DNA and then, BAM, mutations disrupt the natural order and profoundly impact that change.

Communication

Where I was going wrong was, ironically, the focus of my career which is now Data. For those who do not know me, I am a product director, primarily in the analytics and data space.

More simply: For the data generated or consumed by an organization, I build products and services that leverage that data to generate revenue, directly or indirectly through the effectiveness of the same.

I was making the mistake of arguing without data because “I knew everything.” Sound familiar?

Another ironic thing about what I do is that if you work with data long enough, you realize you know nothing. You have educated guesses based on data that, if applied, give you a greater chance of determining the next step in the path.

To bring this full circle, arguing without data is like not knowing how to swim. You make waves, go nowhere, and eventually sink. But add data to your arguments and you create inertia in some direction and you move forward (or backward, we will get to this in a min).

So, how do you argue effectively?

First, make sure that you actually care about the subject. Don’t get involved or create discussions if you don’t care about the impact or change.

As a product manager, when I speak to engineering, one of my favorite questions is “Why do I care?” That one question alone can have the most impact on an organization. If I am told there are business reasons for a certain decision and I don’t agree with the decision, let’s argue it out. Wait, what? You want to argue?

So, back to communication and understanding. “Argue” is one of those words with a negative connotation. When quite simply it could be defined as giving reasons or citing evidence in support of an idea, action, or theory, typically with the aim of persuading others to share one’s view.

Words matter

As many times as I have persuaded others to my point of view, I have been persuaded to change mine.

That is where my biggest change has occurred.

I now come into these situations with an open mind and data. If someone has a persuasive argument, I’m sold. It is now about the decision, not me. No pride.

Moving forward or backward is still progress (failure IS an option).

The common thought is that you have to always be perfect and always be moving forward. “Failure is not an option.”

When I hear that, I laugh inside because I consider myself a master of controlled failure. I have had the pleasure to work in some larger, more tech-savvy companies and they all used controlled experimentation to make better, faster decisions.

Making waves is a way of engaging the business to step out of their comfort zone and some of the most impactful decisions are born from dissenting opinions. There is nothing wrong with going with the flow but the occasional idea that goes against the mainstream opinion can be enough to create innovation and understand your business.

And it is okay to be wrong.

I am sure many of you have heard Thomas Edison’s take on the effort to create the first lightbulb. He learned so much more from the failures than he did from success.

”I didn’t fail. I just found 2,000 ways not to make a lightbulb; I only needed to find one way to make it work.” – Thomas Edison

It is important to test what you think will not work. Those small failures can be more insightful, especially when you are dealing with human behaviors. Humans are unpredictable at the individual level but groups of humans can be great tools for understanding.

Don’t be afraid

Turn your negative behavior into something of value. Follow these steps and you will benefit.

    1. Reset the context of your behavior (apologize for previous interactions, miscommunications) and for the love of all that is holy, be positive.
    2. State your intentions to move forward and turn interactions into safe places of discussion.
    3. Learn to communicate alternative opinions and engage in conversation.
    4. Listen to alternative opinions with an open mind.
    5. Always be sure to provide evidence to back up your thoughts and suggestions.
    6. Rock the boat. Talk to more people. Be happy.

A special thank you to John Steinmetz for sharing these thoughts with The American Genius audience.

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Opinion Editorials

Millennial jokes they let slide, but ‘Ok Boomer’ can get you fired

(EDITORIAL) The law says age-based clapbacks are illegal when aimed at some groups but not others. Pfft. Okay, Boomer.

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Boomer sad

A brand new meme is out and about, and it’s looking like it’ll have the staying power of ‘Fleek’ and ‘Yeet!’

Yessiree, ‘Okay, Boomer’ as related to exiting a go-nowhere conversation with out-of-pocket elders has legitimate sticky potential, but not everyone is as elated as I am. Yes, the Boomer generation themselves (and the pick-me’s in my age group who must have a CRAZY good Werther’s Original hookup), are pushing back against the latest multi-use hashtag, which was to be expected.

The same people happy to lump anyone born after 1975 in with kids born in 2005 as lazy, tech-obsessed, and entitled, were awfully quick to yell ‘SLUR’ at the latest turn of phrase, and I was happy to laugh at it.

But it turns out federal law is on their side when it comes to the workplace.

Because “Boomer” applies to folks now in their mid 50’s and up, workplace discrimination laws based on age can allow anyone feeling slighted by being referred to as such to retaliate with serious consequences.

However for “You Millenials…” no such protections exist. Age-based discrimination laws protect people over 40, not the other way around. That means all the ‘Whatever, kid’s a fresh 23-year-old graduate hire’ can expect from an office of folks in their 40s doesn’t carry any legal weight at the federal level.

And what’s really got my eyes rolling is the fact that the law here is so easy to skirt!

You’ve heard the sentiment behind #okayboomer before.

It’s the same one in: ‘Alright, sweetheart’ or ‘Okay hun’ or ‘Bless your heart.’

You could get across the same point by subbing in literally anything.

‘Okay, Boomer’ is now “Okay, Cheryl” or “Okay, khakis” or “Okay, Dad.”

You can’t do that with the n-word, the g-word (either of them), the c-word (any of them), and so on through the alphabet of horrible things you’re absolutely not to call people—despite the aunt you no longer speak to saying there’s a 1:1 comparison to be made.

Look, I’m not blind to age-based discrimination. It absolutely can be a problem on your team. Just because there aren’t a bunch of 30-somethings bullying a 65 year old in your immediate sphere doesn’t mean it isn’t happening somewhere, or that you can afford to discount it if that somewhere is right under your nose.

But dangit, if it’s between pulling out a PowerPoint to showcase how ‘pounding the pavement’ isn’t how you find digital jobs in large cities, dumping stacks of books showing how inflation, wages, and rents didn’t all rise at the same rate or defending not wanting or needing the latest Dr. Oz detox… don’t blame anyone for pulling a “classic lazy snowflake” move, dropping two words, and seeing their way out of being dumped on.

The short solution here is – don’t hire jerks – and it won’t be an issue. The longer-term solution is… just wait until we’re your age.

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