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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 Gen X is nailing the COVID-19 social distancing order

(EDITORIAL) Of course, someone found a way to bring up generational stereotyping during COVID-19 and claim who is best, but are they onto something?

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Demographics and categorizing people helps us to process groups. A huge part of demographics and how we market ourselves in a job search, for example, is sharing our level of experiences and skill sets related to our profession – thus alluding to our age. Millennials (b. 1981-1996) received a lot of generational shame for being elitist and growing up in a time where they all received participation trophies – therefore being judged for not always winning a fair competition.

Gen X (roughly b. 1961-1981) has often commented that they feel like the forgotten generation which so much attention being play to the Baby Boomers (b. 1946-1964) who seemed to be born in to a great time of prosperity for “The American Dream” and then the Millennials who overtook Gen X and some of their jobs while they weren’t enough Gen Xers to fill them.

In this article “It Took a Global Pandemic, But Generation X is Finally Getting Love”, it is discussed how great Gen X is at this social distancing thing and maybe this will be helpful to anyone who feels like they are losing their mind. This is by no means an intent to shame any generation nor claim no one else knows how to handle it but this article does a great job about why Gen X might be primed to be handling the global pandemic well with the times they were raised in.

Right now, it’s a waiting game for many people who’s professions and lives have changed in what seemed like overnight. The patience required. The uncertainty of it all. The global pandemic forced (without any forgiveness), a swift move to new ways of life. The busy-ness of our days came to a crashing halt when we were no longer allowed to be out and about in places with large groups and possibly sent home to work remotely.

Many non-essential businesses were forced to close which meant people could not only not work at the office, but also had to cease their extra-curricular activities like working out at the gym, shopping, eating brunch with friends or taking their kids to their sporting events, a playground and/or coordinating a play date or sleepover. The directive from our local and federal government was for “social distancing” before the shelter in place orders came.

Gen X may agree that there were some pretty great things about their childhood – the types of things you do with your time because you don’t have a smartphone or tablet addiction and the fact that there was no way for your work to get a hold of you 24/7. Gen X did have TV and video games and sure, Mom and Dad didn’t really want you spending all of your time behind a screen but it also seemed that there wasn’t as much of a guilt trip if you did spend some of your “summer vacation” from school playing Nintendo or Sega with your neighborhood friends.

It seems like the article alludes to the idea that COVID might be helping people to get back to some of those basics before smartphones became as important to us as one of our limbs.

Gen X has had no problem adapting to technology and in their careers, they have had to adapt to many new ways of doing things (remember when caller ID came out and it was no longer a surprise who was calling?! Whaaaat?! And you can’t prank call anyone any more with your teenage friends at a sleepover! Gasp! You also wouldn’t dare TP an ex-boyfriend’s house right now).

Regardless of the need to learn new hard skills and technologies, everyone has been forced to adjust their soft skills like how technology and still being a human can play well together (since it is really nice to be able to FaceTime with loved ones far away). It seems those slightly unquantifiable adaptable and flexible skills are even more required now. It also seems that as you grow in your career, Emotional Intelligence might be your best skill in these uncertain times.

And not that we are recommending eating like crap or too many unhealthy items, Gen X has been known to be content surviving on Pop Tarts, Spaghetti O’s, Ding-dongs and macaroni and cheese which are all pretty shelf stable items right now. Whatever way is possible for you, it might be a good time to find the balance again in work, technology, home, rest, relaxation and education if at all possible.

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Opinion Editorials

How strong leaders use times of crises to improve their company’s future

(EDITORIAL) We’re weeks into the COVID-19 crisis, and some leaders are fumbling through it, while others are quietly safeguarding their company’s future.

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Anthony J. Algmin is the Founder and CEO of Algmin Data Leadership, a company helping business and technology leaders transform their future with data, and author of a new book on data leadership. We asked for his insights on how a strong leader can see their teams, their companies, their people through this global pandemic (and other crises in the future). The following are his own words:

Managers sometimes forget that the people we lead have lives outside of the office. This is true always, but is amplified when a crisis like COVID-19 occurs. We need to remember that our job is to serve our teams, to help them be as aligned and productive as possible in the short and long terms. 
 
Crises are exactly when we need to think about what they might be going through, and realize that the partnership we have with our employees is more than a transaction. If we’ve ever asked our people to make sacrifices, like working over a weekend without extra pay, we should be thinking first about how we can support them through the tough times. When we do right by people when they really need it, they will run through walls again for our organizations when things return to normal.

Let them know it’s okay to breathe and talk about it. In a situation like COVID-19 where everything is disrupted and people are now adjusting to things like working from home, it is naturally going to be difficult and frustrating.
 
The best advice is to encourage people to turn off the TV and stop frequently checking the news websites. As fast as news is happening, it will not make a difference in what we can control ourselves. Right now most of us know what our day will look like, and nothing that comes out in the news is going to materially change it. If we avoid the noisy inputs, we’ll be much better able to focus and get our brains to stop spinning on things we can’t control.
 
And this may be the only time I would advocate for more meetings. If you don’t have at least a daily standup with your team, you should. And encourage everyone to have a video-enabled setup if at all possible. We may not be able to be in the same room, but the sense of engagement with video is much greater than audio-only calls.
 
We also risk spiraling if we think too much about how our companies are struggling, or if our teams cannot achieve what our organizations need to be successful. It’s like the difference in sports between practice and the big game. Normal times are when we game plan, we strategize, and work on our fundamentals. Crises are the time to focus and leave it all on the field.
 
That said, do not fail to observe and note what works well and where you struggle. If you had problems with data quality or inefficient processes before the crisis, you are not fixing them now. Pull out the duct tape and find a way through it. But later, when the crisis subsides, learn from the experience and get better for next time.

Find a hobby. Anything you can do to clear your head and separate work from the other considerations in your life. We may feel like the weight of the world is on our shoulders, and without a pressure release we will not be able to sustain this level of stress and remain as productive as our teams, businesses, and families need us.

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I just got furloughed. Now what?

(EDITORIAL) Some companies are furloughing employees, betting on their company’s long-term recovery. Here’s what you can expect and should plan for in your furlough.

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Are you furloughed? You are not alone! What now? What does “furlough” even mean? How will I get money? Will I still keep my insurance?

A furlough differs from a layoff in a few ways. Whereas a layoff means you are definitely unemployed, a furlough is at its core unpaid time off. Not all furloughs are created equal, though the basic concept is the same: to keep valued employees on ice without being on the hook for their pay until a financial turnaround occurs.

The good-ish news is that a furlough means the company wants to keep you available. When a company is unable to pay their employees for an extended (often indefinite, as is the case with COVID-19 closures) period, they may opt to furlough them instead of laying them off. This virus has decimated whole industries, at least temporarily.

Furloughed employees are forbidden by law to do so much as answer a work email or text while furloughed–or else the company must pay them. The first large waves of COVID-19 furloughs are in obvious sectors such as hospitality (Marriott International), airlines industries (Virgin Atlantic), though other industries are following suit with furloughs or layoffs.

Some furloughs may mean cutting employees’ hours/days to a minimum. Maybe you’re being asked to take off a couple days/week unpaid if you’re hourly, or one week/month off if you’re on salary. With the COVID-19 situation, though, many companies are furloughing bunches of employees by asking them not to work at all. This particular furlough will last ostensibly for a few months, or until business begins to bounce back, along with normal life.

So, what are your rights? Why would you wait for the company? Can you claim unemployment benefits? What about your other work benefits? I’d be lying if I said I knew all the answers, as the furlough packages differ from company to company, and the laws differ from state to state.

However, here are some broad truths about furloughs that should apply. I hope this information helps you sort through your options. I feel your pain, truly. It’s a tough time all around. I’m on your side.

The first answer people want to know is yes, if you’re furloughed and have lost all or most of your income, you may apply for unemployment benefits. You can’t be expected to live off of thin air. Apply IMMEDIATELY, as there is normally a one or two week wait period until the first check comes in. Don’t delay. Some states provide more livable unemployment benefits (I’m looking at you, Massachusetts) than others, but some income is better than none.

Also, most furloughed employees will likely continue to receive benefits. Typically, life and health insurance remain intact throughout the length of the furlough. This is one of the ways companies let their employees know they are serious about wanting them back as soon as it’s financially realistic. Yet some other benefits, like a matching 401k contribution, will go away, as without a paycheck, there are no contributions to match.

Should you look for a job in the interim? Can you really afford not to? What if the company goes belly up while you’re waiting? Nobody wants that to happen, but the reality is that it might.

If you absolutely love your job and the company you work for and feel fairly confident the furlough is truly short-lived, then look for a short-term job. Thousands upon thousands of positions have opened up to meet the needs of the COVID-19 economy, at grocery stores or Amazon, for example. You could also look for contract work. That way, when your company reopens the doors, you can return to your position while finishing off the contract work on the side.

If the company was on shaky ground to begin with, keep that in mind when applying to new jobs. A full-time, long-term position may serve you better. At the end of this global health and economic crisis, some industries will be slower to return to their former glory–if they ever do. If you’re furloughed from such an industry, you may want to shift to something else completely. Pivot, as they say. Now would be a good time.

The only exceptions are “Excepted” government workers in essential positions, including public health and safety. They would have to work while furloughed in case of a government shutdown (and did previously).

Furloughs are scary, but they offer a greater measure of security than a layoff. They mean the company plans on returning to a good financial situation, which is encouraging. Furloughs also generally offer the comfort–and necessity–of insurance, which means you can breathe a bit easier while deciding your next move.

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