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BioMarin reveals crisis strategy in callous “reply-all” as patient nears final days

BioMarin continues to be at the center of a crisis management nightmare as they deny a cancer patient a life-saving drug, but their strategy was unveiled as the CEO accidentally hit “reply-all” on an email, including the patient’s supporters he is seeking to avoid.

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Reply-all happens to the best of us

Everyone has hit “Reply-All” on an email by accident at one time or another. It is not often, though, that the CEO of a public company facing a full-blown media crisis emails his strategy to the people he is trying to avoid.

Last week I discussed the predictable crisis that BioMarin pharmaceutical company is heading toward and its ethical obligation to at least try to avoid that crisis. Since that article was published, BioMarin seems determined to prove me prescient.

It is difficult to imagine a company less prepared for a crisis of its own making as BioMarin circles its wagons to wage a media war against an ovarian cancer patient named Andrea Sloan who has only days to receive treatment.

This week, we will look a little deeper into the company and their CEO’s strategy revealed in his “Reply-All” email on which he included Andrea Sloan’s supporters, and which was subsequently provided to me.

A deeper dive into this CEO’s crisis “strategy”

As any crisis management professional will tell you, the best way to avoid a crisis is to plan ahead. Large companies with potentially dangerous products – like oil companies – regularly have intricate and well developed crisis management plans in place. Unfortunately, most small and medium sized businesses have no active plan. BioMarin is no small company, however, and the current issues they face are not new to the company.

A pharmaceutical company with over 1,000 employees located in offices all around the world, BioMarin has had over $500 million in revenue in the last twelve months. There is no excuse for this company, which focuses on developing drugs for rare diseases, to not have a plan in place for dealing with the problems they are most likely to face.

Earlier this year, BioMarin faced pressure in the UK when a 17 year old named Chloe Drury applied to be part of a trial as a last hope in her battle against cancer. The trial was arbitrarily limited to patients 18 years and older. Chloe was three months shy of turning 18 years old and her doctors and family approved of her use of the drug, but BioMarin forbade her inclusion in the trial.

Soon after her 18th birthday, Chloe passed away. Chloe’s mother is now leading a fight for new legislation to be passed in the UK that will help others in situations like that her daughter endured.

BioMarin faced some scrutiny because of that situation, so one would think that even if they had not had the foresight prior to the efforts by Chloe Drury’s family and friends to focus attention on their behavior, that afterward they would have gotten prepared in case a similar issue ever arose. The simplest solution would have been to develop a compassionate use policy with clear guidelines and a plan to be able to effectively communicate the policy and rules.

Instead, their promotional materials say that they support compassionate use policies – they just seem to very rarely actually implement them for patients. Compassionate use is described in this article in the Washington Times.

BioMarin’s CEO Jean-Jacques Bienaime is not a man of many words if this one email is typical of his normal communication, but his meaning is clear. After receiving an email from some of Andrea’s supporters to the executives in BioMarin imploring the company to establish a compassionate use policy, Bienaime hit “Reply-All” from his iPhone and apparently did not realize he included Andrea’s supporters on the reply. Let’s take a look at the three sentences he aimed at other leaders of the company on September 8, 2013:

reply

Why this reasonable response is unreasonable

While this argument may sound reasonable – the idea that BioMarin should point out that there are other drugs in this class available – in truth, this is a callous and calculated comment. The drug Andrea Sloan is trying to get from BioMarin is a PARP inhibitor that is thought to be her last chance against the precise type of cancer she has. BioMarin’s BMN673 is a PARP inhibitor that the company has been excitedly telling investors is a drug that is far more effective than other drugs in its category and safer for patients because it can be given in dramatically lower doses.

Because of the extensive, traditional treatment Andrea has faced in her battle against cancer since 2007, her body simply cannot tolerate other drugs on the market. Due to the results of trials BioMarin has touted to investors and scientific journals, Andrea’s doctor has indicated that BMN673 is Andrea’s best and possibly last chance. In extensive communication Andrea has had with the company, this set of parameters has been made clear.

The “Hank” to whom Bienaime addresses the first portion of the email is presumably Henry Fuchs, M.D, BioMarin’s Chief Medical Officer who is included on the email and who is well aware of the unique value of BMN673 to Andrea and that other drugs will not work. It is clear from the sentence, though, that Fuchs actually came up with the idea to spin the company’s response by telling others that Andrea can go find other drugs even though, as a doctor, he knows this is not the truth.

parp

The databases of ongoing trials are easily searchable and this statement either shows neglectful ignorance or a disregard of BioMarin’s own promotion of the results of trials of the drug and the unique way the drug could help Andrea Sloan. And while it is possible that the CEO of the company was simply unsure of the answer to this question, Dr. Fuchs could not be uncertain.

Enter the PR folks

The previous comment did seem to offer an optimist a glimmer of hope, though, until:

pr

Debra Charlesworth handles BioMarin’s public relations, but those relations are normally only aimed at potential investors and so far, the company’s efforts at dealing with local and national media on the issue of Andrea Sloan have proven horribly clunky and cold. Precisely the same, stock wording is used in canned responses BioMarin made to media inquiries during both Chloe’s and Andrea’s ordeals.

BioMarin recognizes that the intense media spotlight on their response to Andrea Sloan and the over 125,000 supporters she has amassed online is outside their current capacity of response and they had no plan for this event, which given their pattern of behavior, was entirely predictable. BioMarin has not spoken directly with Andrea, and instead of having their doctors talk to her doctor at MD Anderson, they had their lawyers talk to him. They have no apparent interest in resolving the issue in an ethical or practical manner, but instead have focused on spreading misinformation and spinning their position through an outside PR agency.

The answer is not hiring an agency

The fix to this problem does not lie in hiring a PR agency, but in fixing the problem which is causing the need to engage in public relations; and other companies should take note of that. And remember, public relations and crisis management are not the same. Besides, I have a hunch that there is a PR agency of about 125,000 people and growing who would be happy to go to work on repairing BioMarin’s image if they were to shift to an ethical behavior by developing a reasonable and functional compassionate use policy.

A KXAN News open records request showed that the FDA has approved 3,149 compassionate use requests over the last several years. The FDA only approves the drug once the pharmaceutical company has agreed to give it to the patient. So, in 3,149 recent cases, drug companies have said yes to patients in this situation. It is clear to no one why BioMarin has not.

Below: petition on Change.org calling for BioMarin to grant access to this life-saving drug that the FDA has approved for Sloan’s case
biomarin refusing care

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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6 Comments

6 Comments

  1. Liz S

    September 16, 2013 at 3:40 pm

    David, you make some terrific points in this piece about crisis management do’s and don’t’s. But there is so much subtext, I find it difficult to discern your goal, which appears to be, at least on the surface, to criticize business practices regarding compassionate use without fully comprehending how companies make these decisions. Moreover, $500M is chump change in the world of pharmaceuticals; the big players count on one drug for that revenue. My point is what is your point? Crisis management? Or criticism of compassionate use? If it’s the latter, I do encourage you to research your subject matter more thoroughly; relying on the Washington Times to explain compassionate use is just silly.

    • David Holmes

      September 16, 2013 at 4:44 pm

      Liz – Thanks for your response. I regularly write a column here and it is usually focused on crisis management. To that end, that is the overall purpose of the article – to discuss the crisis-management failings of the company. I have also written about oil spills and fertilizer plants and college football coaches who turn a blind eye to pedophiles, and in each of those cases, it is true: there were people with much greater expertise on oil spills, fertilizer plants and turning a blind eye to pedophiles. I do not claim to be an expert in any of those things, but I did examine them in my articles through a lens of crisis management.

      I have learned a lot about compassionate use in the last few weeks while following this issue, but there is not a depth of knowledge of the issue or how such decisions are made in pharmaceutical companies that is required to understand the crisis facing this company or the ethical pressures the company is facing for how they make those decisions.

      The Washington Times link was included as a simple summary of the issue as it pertains specifically to this case and for the depth most people who read this will likely go, it is sufficient in gaining an understanding of the current situation.

      Your own point gets somewhat confusing to me when you mention the relative revenue of the company. I know of much smaller companies which have functional crisis management plans and was simply saying that the company is big enough to know better.

      One final comment: I appreciate that you likely know much more about compassionate use than I do. In fact, from the confidence of your comments, I would not be surprised if you know more about compassionate use than BioMarin. As I mentioned in my story, they love to tout the claim that they support compassionate use in their PR, yet their responses in this case have indicated that they do not have a policy.

    • Sarah Del Collo

      September 16, 2013 at 6:57 pm

      I’d argue that part of the problem with this specific company’s crisis prevention / management strategy is that they haven’t themselves been able to enunciate their decision-making process in a clear and compelling fashion. That makes this sort of accidental leak all the more destructive, as it presents to the public the image of a company whose energies are focused on distracting people from their reasoning rather than on illuminating it. If the public fails to fully understand how this company came to make this decision, that’s a failure on the part of the company’s own crisis prevention and management team. I’ll add that I am personally connected to Andrea Sloan, but that doesn’t mean that I can’t respect a decision that has compelling reason on its side. In this case, BioMarin has simply not supplied it.

      • David Holmes

        September 17, 2013 at 1:12 am

        Sarah – Very well said. My assessment is that the company is so far removed from patients and the public and have had so little need to communicate with the public that their capability to do so has essentially atrophied. If they had a different communication strategy going into all of this, we would likely not be talking about this right now.

  2. David Holmes

    September 17, 2013 at 11:42 am

    Yeah. I truly believe that had the company simply have communicated more effectively, this discussion wouldn’t be happening. Thanks, Liz.

  3. R Smith

    October 3, 2013 at 4:43 pm

    ….OR not so much that they KNOW it’s a failure NOW, but what happens if Andrea’s treatment just does not work for her? With all the publicity this has already gotten? It’s a PR nightmare either way.

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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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Opinion Editorials

The perfect comeback to that earnest MLM guy you meet at every coffee shop

(EDITORIAL) We’ve all been cornered by someone that wants to offer us financial freedom for joining their pyramid scheme, but we typically freeze or just reject them. There’s another way…

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The following editorial was penned by Chris Johnson who offers the perfect comeback to that stranger who approaches you in Starbucks or that person you haven’t talked to since high school that wants to discuss your financial freedom:

Last week, I was at Starbucks, doing some marketing work. This was apparent to all who could view my laptop by the big 72 type “Marketing” headline that I was working on in my browser.

A man sharing a table, with no apparent laptop of his own, was taking interest in what I was doing. He was mid-40s and he was ambiently stalking and sizing everyone around him up. He was swallowing and always “about to talk.”

Finally, after I looked up to collect my thoughts, he broke my reverie.

“Are you in marketing?”

See, our man (Justin was his name) had just stated a business, an e-commerce business. He was vague on his details.

I knew where this was going. We all know.

Anyone that’s ever worked from a Starbucks has met Justin.

Justin mentioned a couple of his relatives, also with businesses. And, without asking what type of clients I serve, told me that they’d be a great fit for me. He’d love to introduce me, if we could just exchange contact info.

I knew exactly what he was doing. As God as my witness, I knew the only place where this interaction would possibly go. I wasn’t, not for a minute, fooled by the promise of referrals that would never happen.

Of course, I give it to him, not because I think there’s any hope that this will work out. But because I want to know. We exchange texts, and I save his contact info.

He excuses himself and gets into his 2002 rusty Kia, and drives off.

The next day, I get a call with the ID: MLM GUY STARBUCKS 2019.

“Chris, we met at Starbucks,” he says, “This is Justin. And I was wondering if you were open to financial opportunities for your family.”

Well, knock me over with a feather. This was such a surprise.

Without a plan in my head, I said “Justin, are you in the Amway organization? Because if so, I have been waiting for your call.”

Justin confirmed that yes, he was in Amway. And he was really glad!

“Justin, I’ve got some great news for YOU, would you like to hear about it?”

“Sure,” he goes.

“OK, well, you have to be open – and committed – to improving your relationship with Amway. Is that something you’re open to right now?”

“Yes,” he said, “Definitely.”

“Great. So let me tell you about what I do with the Amway people I meet. See, I’ve made a really profitable career out of helping them, and it’s turned into the focus of my life.” This is, of course, a lie, but we were even because Justin got my phone number on the pretext of referring me business.

“OK, so the deal is this. One of the problems with Amway is that it turns you into someone that has to monetize all of your family and friends. And when that happens, you become less about the relationship, and more about the money. Has that happened to you?”

“Yes. Yes it has.” Justin admits.

“Yes, great, this is what we’re hearing.”

The words tumbled out of my mouth: “See all over America there are Amway distributors, just like you. They are chained to various Starbuckses. This is the old model, there’s simply no freedom.

They have to fight tooth and nail to get appointments and most of ’em don’t go anywhere. For most of the Amway owners, this isn’t working once they pitch all their friends and all their family.

So I’ve created an organization called Amway Freedom. All you have to do is sign up. By signing up, you agree to automatically pay $5.00 per month to me, to be free of Amway.

But the REALLY good news is that you can sign OTHER people up, and keep half of the money for your family and your freedom. And when they sign up, half goes to support the reps, and the other half goes to support your opportunity!

From what I hear, over 1.5 million Americans signed up for Amway at some point. Tell me, Justin, if you got just 1% of that market – 15,000 people to pay you $5.00 a month without you having to do anything, would that change your life?

Would $75,000 per month change your life?”

Justin said “Um, well, this isn’t really what I was think-”

“Look Justin, this isn’t for everyone. I know that. Most people won’t be able to take advantage of this opportunity. They only think of the problems. They can’t imagine how this could work, a business with no merchandise and freedom.

But, Justin, you’re helping people get free of the endless random meetings… the Starbucks bills… the gas expenses. You’re turning your story of struggle into a story of success. Are you ready, Justin?

This is my business,” I said, “And this is what I want for you, Justin. Are you ready to join your challenge and fight for the freedom of 1.5 million people that have tried Amway?”

“Um…” Justin said. “I just don’t.”

“I see. This might not be working for you, Justin, and that’s 100% OK. Take all the time you need. But, if you sign up today, I’ll offer you the EXCLUSIVE market rights to help free people from Younique, Herbalife, Infinitus and over 30 other household brands. That makes a market – just in America – of 20 million Americans! Doesn’t that sound great, Justin? If you captured just 1% of that, that’s 200,000. And that business would earn 1 million every MONTH.

All without products to store, all while helping people.

Will you be paying with a Visa or Mastercard?”

Justin paused for a moment. “This was a waste of my time,” he finally said.

“You don’t really have a business!” he spat.

Well done, Justin, well done indeed.

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Opinion Editorials

Culture can be defined by what employees don’t say

(OPINION) What your employees say defines your business. What your employees don’t say defines your culture.

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Whether the boss realizes or not, employees – the folks who often manufacture, handle, and sell the products themselves – can see sides of the business that management could easily overlook, including potential risks and improvements. So how do you make sure your employees are speaking up? A new study by Harvard researcher Hemant KakkarSubra Tangirala reveals that when it comes to speaking up, your company culture is probably either encouraging or discouraging it.

Tangirala wanted to compare two theories as to why employees choose to stay quiet when they could share their worries or ideas with company management. The “personality perspective” presumes that shy, reticent employees simply don’t have the gumption to speak up; therefore, the way to get more perspective from your employees is to make a point to hire extroverted people.

Meanwhile, the “situational perspective” posits that the company culture may either be encouraging and even expecting employees to speak up or discouraging it by creating an environment wherein employees “fear suffering significant social costs by challenging their bosses.”

In order to test these two theories against one another, Tangirala surveyed nearly 300 employees and 35 supervisors at a Malaysian manufacturing plant. First, the survey measured each employee’s “approach orientation,” that is whether or not, all things being equal, they had a personality more inclined to speaking up or staying mum. Next, employees were asked whether they thought their input was expected, rewarded, or punished. Lastly, supervisors were asked to rank the employees as to how often they spoke up on the shop floor.

The survey showed that both personality and the work environment significantly influenced whether or not an employee would speak up – however, it also showed that environmental factors could “override” employees’ natural inclinations. In other words, if employees felt that they were expected or would be rewarded for speaking up, they would do so, even if they aren’t naturally garrulous. On the other hand, even the most outspoken employees would bite their tongues if they thought they would be punished for giving their opinion.

The study also identified two major areas wherein employees could be either encouraged or discouraged from sharing their perspective. First, employees can be encouraged to suggest improvements or innovations that will increase workplace safety and efficiency. Secondly, employees should be expected to speak up when they witness dangers or behaviors that could “compromise safety or operations.”

Although the study was limited, it seems to point towards the importance of creating a workplace culture wherein your employees are rewarded for speaking up. Doing so could potentially provide you with invaluable insights into how to improve your business – insights that can only come from the shop floor.

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