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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

3 things to do if you *really* want to be an ally to women in tech

(EDITORIAL) Diversity is known to strengthen the overall performance of a company and its teams, and there are a number of ways you can be an ally to the talented women already on your workforce.

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More and more women are leaving their positions with tech companies, citing lack of opportunity for advancement, wage gaps and even hostile working conditions as some of the reasons why.

What’s better for the tech industry and its employees than cultivating inclusive and diverse departments? Diversity is known to strengthen the overall performance of a company and its teams, and there are a number of ways you can be an ally to the talented women already on your workforce. To name a few:

1. Be open to listening to different perspectives.

It can be awkward to hear so many reports of workplace politics stacking against women, especially if you’re not a woman!

Instead of getting uncomfortable or defensive – ask open ended questions and be interested in a perspective that isn’t yours and may be unfamiliar.

Don’t seek to rationalize or explain the experiences you’re hearing about, as that can come off as condescending. It’s common for women to be interrupted or spoken over in team gatherings. If you notice this happening, bring the conversation back to where the interruption began. Offering your ear and counting yourself as responsible for making space will improve the overall quality of communication in your company.

Listening to and validating what women have to say about the quality of their employment with a company is an important step in the right direction.

Expressing something as simple as “I was interested in what you had to say – could you elaborate on your thought?” can help.

2. Develop an Employee Resource Group (ERG) program.

An ERG is a volunteer-based, employee-led group that acts as a resource for a particular group of employees. An ERG can help to foster inclusiveness through discussion, team-building activities and events. It’s common for a department to have only one or two women on the roster.

This can mean that the day to day feels disconnected from concerns commonly shared by women. disjointed it might feel to be on a high performing team, without access to relatable conversations.

3. Be responsible for your company’s culture.

Chances are, your company already has some amazing cultural values in place. That said, how often are you checking your own performance and your co-workers performances against those high standards? Strong company culture and values sound great, but whether or not they’re adhered to can make or break the mood of a work environment.

Many women say they’ve experienced extremely damaging and toxic cultural environments, which lead to hostility, frustration, and even harassment. Take action when you see the new woman uncomfortable with being hit on at team drinks.

Call out those who make unfriendly and uncouth comments about how women perform, look, or behave.

Setting a personal threshold for these kinds of microaggressions can help you lead by example, and will help build a trustworthy allyship.

(This article was first published here in November, 2016.)

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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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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 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.

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Opinion Editorials

How the Bullet Journal method has been hijacked and twisted

(EDITORIAL) I’m a big fan of the Bullet Journal method, but sticker-loving tweens have hijacked the movement. Worry not, I’m still using black and white bullet points with work tasks (not “pet cat,” or “smile more”).

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It’s taken me some time to come around to the Bullet Journal method, because it took me some time to fully understand it (I have a tendency to overthink simplicity). Now that I understand the use, I find it very beneficial for my life and my appreciation for pen-to-paper.

In short, it’s a quick and simple system for organization tasks and staying focused with everything you have going on. All you need to employ this method is a journal with graph or dotted paper, and a pen. Easy.

However, there seems to be this odd truth that: we find ways to simplify complicated things, and we find ways to complicate simple things. The latter is exactly what’s happened with the Bullet Journal method, thanks to creative people who show the rest of us up.

To understand what I’m talking about, open up Instagram (or Pinterest, or even Google) and just search “bullet journal.” You’ll soon find post after post of frilly, sticker-filled, calligraphy-laden journal pages.

The simple method of writing down bullets of tasks has been hijacked to become a competitive art form.

Don’t get me wrong, I like looking at this stuff because I dig the creativity. But, do I have time to do that myself? No! For honesty’s sake, I’ve tried just for fun and it takes too much damn time.

With this is mind, this new-found method of Bullet Journaling as an art is something that: a) defeats the purpose of accomplishing tasks quickly as you’re setting yourself back with the nifty art, and b) entrepreneurs, freelancers, executives, or anyone busy would not have time for.

Most of these people posting artistic Bullet Journal pages on Instagram are younger and have more time on their hands (and if you want to spend your time doing that, do you, man).

But, it goes against the simplistic method of Bullet Journaling. The intent of the method.

And, beneath the washi tape, stickers, and different colored pens, usually lies a list of: put away laundry, feed cat, post on Insta. So, this is being done more for the sake of art than for employing the method.

Again, I’m all for art and for people following their passions and creativities, but it stands to reason that this should be something separate from the concept of Bullet Journaling, as it has become a caricature of the original method.

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