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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:

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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.

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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

The painful, beautiful paradox between suffering and success

(EDITORIAL) Evaluating success is about more than focusing on “rise and grind” cliches, instead adopting a meaningful perspective.

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The painful, beautiful paradox between suffering and success

I know I’m not entirely old, but in my 27 short years on earth, I’ve found one thing to be absolutely true — life exists inside of paradoxes.

Foods are sweet and savory, sour and sweet. Weather is sunny and beautiful, damp and dreary. Life itself is living and dying, up and down. And in every paradox there is something to be learned.

The most recent paradox I’m learning is the one that exists between suffering and success.

I think it is important to first define the two words: suffering and success. And not the Miriam-Webster Dictionary definition, that definition focuses entirely of the etymology of the word and doesn’t take life into account.

Suffering, as it pertains to success, is what a lot of people call the grind. Suffering is whatever loss you feel along the way. They’re the tiny deaths you die each time something doesn’t go the way you thought it should. It is that voice in the back of your head that keeps telling you to quit— that you’ll never make it. Suffering is what makes the success so sweet.

Success, as it pertains to suffering, is each time you get back up. It is the drive you have that tells the naysayers to suck an egg. Success is the rebirth that follows each tiny death. It is what accompanies each milestone that is met. Success is what makes the suffering worth it.

I think this paradox is materialized well in the Japanese practice of Kintsugi. Kintsugi is an art form of repairing broken ceramics with gold alloy. It is the artistic manifestation of the Japanese philosophy of wabi-sabi, or celebrating the imperfection. You see, Kintsugi has less to do with the what, and everything to do with the why… Why repair broken ceramics? Why go through such lengths to make it beautiful?

Because the imperfections tell just as much of a story as the original piece. The gold lines that now hold the ceramic together add beauty to the piece *while* strengthening it.

Kintsugi reminds us to exist in the paradox of suffering and success. Not to fight it or to ignore it but to celebrate it and to be a part of it.

Suffering is an inescapable part of existing. It is also the fortifier of most experiences.

Suffering is the gold alloy that binds our successes together. Suffering is the the beauty that intricately weaves between the success of a once shattered dream. Success is the mended piece that is now decorated with suffering.

The two give each other such a deeper context. Outside of each other, suffering and success are merely events that happen. Independently, they give some things context. Together they give everything context.

So I implore you to try this:

Make a list of your successes, then list every single failure that led you to that place. Don’t do so out of spite or out of anger. Rather, do so with thanksgiving. Fondly remember the lessons you learned through suffering and don’t forget them when you experience success.

And through this exercise, going forward, you’ll remember your own gold alloy sprinkled throughout your life.

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Opinion Editorials

10 ways to digitally declutter and change your whole mindset

(OPINION EDITORIAL) One of the easiest ways to boost creativity and productivity is to do a spot of cleaning- both physically and digitally.

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Decluttering digitally

As more and more of our lives have moved digitally – our hard drives and cloud storage have become the 21st century junk drawer. It’s about time for some spring…er…autumn cleaning, and one of the places that could use straightening up is our tech.

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Digital clutter not only eats up memory – a premium on phones or tablets, but it slows us down, makes us feel like we have too much going on, and blocks the gorgeous photos that we set as our wallpaper. Here’s a few tips/ideas to help jumpstart your list:

1. CLEAN THAT DESKTOP

Like a messy workspace, a dirty desktop on your mac or pc looks terrible! Clean up those files and folders, and delete those application shortcuts you don’t need. Put a nice zen or minimalist background (or a picture of your dog/child/Subaru) to show off that shine.

Smart Folders – Set up your folders and documents in a good folder system. Organize by subject or date, and know when to toss old files. A logical folder system means you don’t waste time hunting through things.

2. Unsubscribe

For the most part, we receive way more retailer notices then we can ever use. If you find yourself ignoring those, just go ahead and unsubscribe – or at least reduce the email in the preferences options found at the bottom of every email. You can also junk old RSS feeds!

3. Toss the Downloads

The downloads folder in your mac or pc gets anything you pull from a browser. That’s often a digital junk drawer that takes up a lot of space on your hard drive. Sort by date, and either delete or organize what’s in that folder.

4. Cut the Lights and Sound

If you have movies or music you don’t listen to, delete it from your phone or hard drive space. Chances are, most major media services remember your purchase and can be downloaded or streamed in the future.

5. Close or Forward unused email accounts

If you have unused email accounts that you don’t want, either close the account or forward to an active email – this is especially great for those university emails that you don’t remember your password to because you graduated in five or ten years ago.

6. Slow that Camera Roll

Your camera roll on your phone is another big user of space. Delete any photos that are poor quality or that have no value. Import or organize your photos in something like Dropbox or Google Drive if you need to make space.

7. Clear out your inbox

That little red notification icon on my iPhone drives me crazy. Regularly keeping your inbox clean can not only help you find emails easier, but ensure you don’t miss a bill or important communication.

8. Use email filtering

If you can’t bring yourself to empty your inbox, use filtering to move emails to certain folders, like IMPORTANT, IGNORE, COUPONS, etc. Filtering tools exist in Gmail, Exchange, and iCloud Mail.

9. Uninstall Applications and Software

If you have software you don’t use on your computer – take it off. You can always download it again. If you’ve been afraid of deleting Flappy Bird from your phone – it’s okay. You can always re-download purchased phone apps as well.

10. Delete the Social Media Noise

If you have friends, pages, and follows on Facebook or twitter that don’t bring you any value, cut them out. Or be liberal with the unfollow/unsubscribe/mute functions.

Get to it, Lars

In many ways, digital clutter is just as bad for us as physical clutter. It detracts from our enjoyment and takes us away from the content and work we want to get to. Take a few minutes, cut the kilobytes, and don’t let tech take your time. Get cleaning!

#DigitallyDeclutter

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Opinion Editorials

Serial procrastinator? Your issue isn’t time management

(EDITORIAL) Need a hack for your time management? Try focusing on your energy management.

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Time hack

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.

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Recently, publishers like BBC have begun to approach productivity 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?

Time management

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?

Energy Management?

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.

Do yourself some good

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.

#timemanagement

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