Connect with us

Opinion Editorials

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.

Published

on

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.

Continue Reading
Advertisement
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

Leave a Reply

Your email address will not be published. Required fields are marked *

Opinion Editorials

Who’s missing next to Zuckerberg as he testifies at the political circus?

(EDITORIAL) Facebook Founder, Mark Zuckerberg isn’t testifying because of web privacy violations, this is all a political opportunity with a dash of regulatory salivation thrown in.

Published

on

zuckerberg

Cambridge Analytica. The name of this company has become synonymous with a breach of your privacy. Several years ago, the company took advantage of a loophole that gave them access to 50 million Facebook users’ information. The story is convoluted, but the entire timeline is laid out here so you can see this is about more than just your privacy.

Today, Facebook has begun alerting users if their info was used by Cambridge Analytica to politically target them without their direct consent. But there is no recourse other than the sheer knowledge that your info was used. How novel.

Facebook Founder, Mark Zuckerberg has headed to Capitol Hill to testify before Congress about this situation, which we all know will turn into a dog and pony show filled with political bluster from both sides as they use their time to lecture and stump, and maybe ask a semi-informed question or two.

Why is Zuckerberg on the hot seat alone? Because they’re the biggest visible fish in the sea, so Facebook will be made an example of. Their entire business model is to make money off of your information, and they’ve been pretty open about that since day one.

But Zuck didn’t set the tone, Eric Schmidt at Google did. And social media platforms have followed suit ever since.

Think about it – you know that Facebook collects the data you insert into their walled garden, but Google manufactured your tv, all of your phones, Gmail accounts, and your home assistant, and it’s obvious what they’re doing with all of that data as it is mined and consolidated in a much less obvious way than Facebook. And it’s strange that Google hasn’t come up in any of these talks of collusion, given the depth of their data and lax requirements of advertisers.

That takes us to the overreactions of today – you know that all of you deleting your Facebook accounts aren’t really deleting anything other than your access, right? Facebook still retains the rights to your photos, posts, and past activity. Just as Schmidt noted above as it pertains to Google.

So your information was used to be advertised to. Nothing new to see here. In fact, it’s not even new that Facebook data could be used politically. Although Facebook seemed to turn the other way when this information was being used, they’re certainly no political virgins – Carol Davidsen, director of data integration and media analytics for Obama for America, said Sunday on Twitter of Facebook, “They came to office in the days following election recruiting & were very candid that they allowed us to do things they wouldn’t have allowed someone else to do because they were on our side.”

So it’s not new that Facebook allows third parties to use your data. It’s also not new that the data is openly used for political targeting. So why is this call for Congressional hearings now that the toothpaste is so far out of the tube that it’s down the sink!?

Sadly, politics. Because this time it benefited someone that’s popular to hate. But the result will have nothing to do with politics at all.

People under 30 never lived a life with privacy and can tell you that they know it doesn’t exist – and if it’s gone, it’s still on a social media company’s servers somewhere. And if you take a quiz about what kind of bread you are, you know that your info is going to be used for something, because we all know that if you don’t pay for a product, YOU are the product (that’s an old line dating back eras). This is what politicians intend on legislating, good or bad.

Sure, Zuckerberg is the target of the hearings because of the Cambridge Analytica situation that benefited Trump instead of literally anyone else on the planet, but again, he’s flying solo because he’s the biggest fish in the social media sea.

And he should not be in the hot seat alone.

Jack Dorsey should be sitting next to him. Steve Huffman should be sitting next to him. Reid Hoffman should be sitting next to him. Eric Schmidt should be sitting right behind Sundar Pichai.

But it’s more than that. If Zuckerberg is on the hot seat, so should every company that ever uses your data without your direct consent or complete understanding. The politicians and talking heads are all dominating the airwaves right now screaming about privacy, and stomping around that it must be addressed (again, they’re over a decade late). So why not force the auto insurers that use your smartphone info, or health insurers that can use your smartphone activity to indicate your activity levels (and duh, insurability). Why not the fitness apps that report user locations to the public, accidentally unveiling secret military bases? Why not television manufacturers for using data above and beyond what cable knows (like app usage), selling that info to the highest bidders?

Try to tell me this is about privacy. It’s not. So let me tell you where this is going.

Zuckerberg’s flamboyant “let them eat cake” attitude is something the tech world is used to, but politicians are not. What’s at stake is the very nature of Facebook. What are they? How can politicians regulate them? How can they protect users based on the marginal information they kind of understand and kind of don’t?

The bottom line is that they’re asking if Facebook is a media company, a moniker they’ve brushed off for years. That’s where this is going. And they are a media company. Because they are, but are not legislated as one, politicians have set a trap for ol’ Zuck.

And he shouldn’t be alone testifying. He should have a litany of counterparts at various social media companies up there. But their first step is to pin him with being a media company so they can simply regulate the rest.

We’ve cheered on and red flagged both sides of the social media boom since before it began, but watching people not in tune with technology fumble over regulating it is simply bad for business.

Continue Reading

Opinion Editorials

How top performers work smarter, not harder

(EDITORIAL) People at the top of their game work less, but with more focus – learn how to replicate their good habits to get ahead.

Published

on

working smarter

Practice, practice and more practice will get you to be more competent in what you do, but working smarter isn’t always about competency, at least in business. Productivity expert, Morten T. Hansen’s studies indicate that multitasking is detrimental to working smarter. But it’s only half of the problem.

Hansen discovered that the top performers did not try to do thousands of things at a time. He’s not the only one.

Earl Miller, an MIT neuroscientist outlines why humans cannot multitask. As he puts it, “our brains… delude us into thinking we can do more.” But this is an illusion. When we interrupt the creative process, it takes time to get refocused to be creative and innovative. It’s better to focus on one project for a set amount of time, take a break, then get started on another project.

Hansen also found in his research that the top performers focused on fewer goals. He recommends cutting everything in the day that isn’t producing value. As a small business owner, you have to look at which tasks bring in the most profit. This might mean that you outsource the bookkeeping that takes you hours or give up being on a committee at the Chamber of Commerce that is taking too much time away from your business.

Taking on less work will help you work smarter, but Hansen found that it goes hand-in-hand with obsessing over what you do have to do.

When you have fewer burning fires, you can dedicate your time to these tasks to create quality work. According to Hansen, this one thing took middle performers at the 50th percentile and put them into the 75th percentile. When someone is competent in writing reports, for example, and can focus their energy into that, the work is much better.

Top performers also take breaks to rest their brains. One of my favorite analogies is the one where a lumberjack is given a stack of wood that needs to be cut down. He starts with a sharp ax, but over time, as the ax gets dull it becomes harder to chop the wood. By taking a break and sharpening the ax, more gets accomplished with less effort.

Your brain is like that ax. It works great when you first get to work. You’re excited to get started. In a couple of hours, your brain needs a break. Go outside and take a walk. Get away from your desk. Do something different for 15 minutes. When you come back, you should feel like you have a second jolt of energy to take on tasks until you break for lunch. Science backs the need for breaks during the day.

By taking breaks, obsessing over what you have to do, and laser focusing on fewer goals, you’ll be outperforming your competitors (and even coworkers). Work smarter, not harder.

Continue Reading

Opinion Editorials

The real key to working smarter, not harder

(EDITORIAL) We’ve all heard that we should be working harder, not smarter, but how does one go about doing that aside from a bunch of apps?

Published

on

lean concept

I know you’ve heard the phrase, “work smarter, not harder,” but what does that mean exactly? How do you work smarter?

A new book by Morten T. Hansen attempts to answer the question. “Great at Work: How Top Performers Do Less, Work Better, and Achieve More” was released at the end of January. Hansen found 7 different behaviors outside of education levels, age and number of hours worked. I’d like to take a look at a couple of the things he recommends. Read the book if you want to know more.

Let’s continue on by addressing the 10,000 Hour Theory of Expertise. Under this principle, it’s thought that if you spend 10,000 hours in deliberate practice of a skill, you’ll become world-class in any field. The Beatles are thought to have used this theory to become one of the greatest bands in history. But it’s not just about practicing until your fingers bleed or you can’t stay awake any longer, it’s really about pushing yourself in an area.

Although it has been argued that this theory doesn’t necessarily apply in business or professions, there’s something to be said about deliberate practice.

When it comes to working smarter, no, you don’t need to spend 10,000 hours in the workplace to get better at your job. But you can put some of the principles of the theory in action:

  • Pick a skill that you need to develop. There’s no way you can work on every skill at the same time. Just choose one to focus on for three months, or six months. Review your performance now. Have a benchmark of where you want to take that skill.
  • Carve out time to work on that skill. Spend 15 minutes a day doing something that helps you get better. You know the old joke? How do you get to Carnegie Hall? “Practice.” You’re going to have to find ways to practice.
  • Work on specific elements of a skill. Typically, the skills we want to improve involve a lot of smaller things. Take a good presentation. You need connect with people, have a good outline and learn to have diction and tons of other things. Work on one thing at a time. ?I used to have a real problem with looking at people when I was giving a presentation. For quite a few months, I made it a priority to be conscious of making eye contact. No matter who I was talking to, the cashier, a patron at the center where I volunteer and even my neighbors. It’s much easier now for me.
  • Get feedback. You may believe you’re making progress, but others may have a different vantage point. Find a couple of good mentors who can really evaluate your performance and offer constructive criticism.

Repeat until your skill-set grows.

To get better, you need challenge and practice. Believe me, you’re going to make some mistakes along the way. Get up, dust yourself off and keep practicing.

Competence in a particular area goes a long way toward working smarter.

But wait, there’s more – the discussion continues in part two of this series, keep reading!

Continue Reading
Advertisement

The
American Genius
News neatly in your inbox

Join thousands of AG fans and SUBSCRIBE to get business and tech news updates, breaking stories, and MORE!

Emerging Stories