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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:

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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.

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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

Study says women need to be seen as “warm” to be considered confident

(EDITORIAL) A new study reveals that despite progress, women are still successful when they fall into a stereotype. Let’s discuss.

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About 15 years ago, I took a part-time job in a mental health clinic handling bookkeeping and billing. I had absolutely no idea what I was doing, but I attacked the job with what I felt was confidence. For the first few days, I simply felt as if I was an imposter. I kept asking questions and pushing forward, even though I didn’t make much progress. Within just a few days, I felt the hostility of the office manager.

It got progressively worse, and I couldn’t figure out what the heck I’d done to make her so confrontational with me. I thought I was pleasant and respectful of her position, and I was getting along with the other employees. When I talked to our boss, I was told that I intimidated the office manager. HUH? Me? Intimidating? I was a complete mess at the time. I could barely put together a business casual wardrobe. My emotional health was so fragile that I rarely went anywhere new. And she found me intimidating?

Researchers have been studying how people judge others. Susan Fiske, researcher out of Princeton, found that competence and warmth are two of the dimensions used to judge others. Based on that research, Laura Guillén, Margarita Mayo, and Natalia Karelaia studied the competence and warmth at a software company with 236 engineers.  Guillén and her team collected data at two separate times about these engineers and their confidence and influence within the organization.

They found that “men are seen as confident if they are seen as competent, but women are seen as confident only if they come across as both competent and warm.

Women must be seen as warm in order to capitalize on their competence and be seen as confident and influential at work; competent men are seen as confident and influential whether they are warm or not.”

We encourage women to be confident, but based on current research, it may not be enough to close the gender gap in the workplace. A woman must be seen as helpful and dedicated to others to have the same influence as a man. As a woman, it’s easy to be seen as the #bossbitch when you have to make tough decisions. Those same decisions, when made by a man might be considered just “business as normal.”

I guess the lesson is that women still have to work twice as hard as men just to be seen as equals. I know that I have to work on empathy when I’m in an office environment. That office manager isn’t the only person who has thought I’m intimidating. I’ve heard it from it others, but you know what?  As a self-employed writer, I’d rather be seen as undeterred and daunting than submissive and meek.

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“Starting a business is easy,” said only one guy ever

(OPNION EDITORIAL) Between following rules, finding funding, and gathering research, no business succeeds without lifting a finger.

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While browsing business articles this week, I came across this one, “Top 10 Business Ideas You Can Start for Free With Barely Lifting a Finger.” These types of articles make me mad. I can’t think of many successful freelancers or entrepreneurs who don’t put in hours of blood, sweat and tears to get a business going.

The author of the article is Murray Newlands, a “VIP Contributor.” Essentially, he’s a freelancer because he also contributes to Forbes, HuffPro and others. He’s the founder of ChattyPeople.com, which is important, because it’s the first business idea he promotes in the article.

But when I pull up his other articles on Entrepreneur.com, I see others like “How to Get Famous and Make Money on YouTube,” “Win Like A Targaryen: 10 Businesses You Can Start for Free,” and “10 Ventures Young Entrepreneurs Can Start for Cheap or Free.”

I seriously cannot believe that Entrepreneur.com keeps paying for the same ideas over and over.

The business ideas that are suggested are pretty varied. One suggestion is to offer online classes. I wonder if Newlands considered how long it takes to put together a worthy curriculum and how much effort goes into marketing said course.

Then, you have to work out the bugs, because users will have problems. How do you keep someone from stealing your work? What happens when you have a dispute?

Newlands suggests that you could start a blog. It’s pretty competitive these days. The most successful bloggers are ones that really work on their blog, every day. The bloggers have a brand, offer relevant content and are ethical in how they get traffic.

Think it’s easy? Better try again.

I could go on. Every idea he puts up there is a decent idea, but if he thinks it will increase your bottom line without a lot of hard work and effort, he’s delusional.

Today’s entrepreneurs need a plan. They need to work that plan, rethink it and keep working. They have to worry about liability, marketing and keeping up with technologies.

Being an entrepreneur is rewarding, but it’s hard work. It is incredibly inappropriate and grossly negligent to encourage someone to risk everything they have and are on the premise of not lifting a finger.

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Opinion Editorials

New age stranger danger: teaching kids about AI

(OPINION EDITORIAL) The world is changing and so is technology. As tech changes so must we, in teaching kids about the dangers about AI.

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When I was younger, when my siblings and I would come home from school, we were required to nourish our minds for an hour (study, homework, read, do math practice, whatever we were feeling that day) and then we were banished from the house until dinner.

We had to go outside and create our own fun. We rode bikes to friends houses, we went “fishing” in the creek, sometimes before we left the house we’d search the couch for loose change and go to our favorite corner store and share a bag of skittles.

Our neighborhood was a safe one — it was one of those ideal 90s neighborhoods where our house was seated on the end of a cul-de-sac so there was little traffic and there were enough kids on the street to field two kickball teams.

Each parent on the street was allowed to reprimand us and there were rarely any locked doors. As a 10 year old it felt like ultimate freedom. But, with that freedom came a very important lesson in strangers and what to do if we were ever approached by one.

I’m sure stranger danger is still a thing taught by parents and schools alike but we went from don’t talk to strangers online or get in strangers’ cars to getting online to request a stranger to drive us somewhere.

With the advancement of technology has come a readiness to bring strangers in (/near / to) our homes. The most invitations coming from those personal assistants many homes can’t seem to function without.

Alexa, Google Home, Bixby or whatever assistant you may use are all essentially strangers that you are willingly bringing into your home.

Just yesterday I had a conversation with a college kid that didn’t know that the microphone on those things are always on — as such is true with the Facebook, Instagram and Facebook Messenger apps.

In a recent article from Rachel Botsman (BOTSman, hmmmm), she describes the experience her three year old had with an Alexa.

Over the course of the interactions, her daughter asks the bot a few silly questions, requests a few items to be bought, asks Alexa a few opinions, she ultimately sums up her daughter’s experience as saying, “Today, we are no longer trusting machines just to do something, but to decide what to do and when to do it. The next generation will grow up in an age where it is normal to be surrounded by autonomous agents, with or without cute names.”

I’m not a mother and I’m definitely old enough to be extremely skeptical of machines (iRobot anyone?) but the effects smart bots will undoubtedly have on future generations have me genuinely concerned. Right now it seems as harmless as asking those assistants to order more toilet paper, or to check the weather or to see which movies are screening but what will it become in the future?

A MIT experiment cited in the Botsman article 27 children, aged between three and 10, interacted with Alexa, Google Home, Julie (a chatbot) and, finally, Cozmo (a robot in the form of a toy bulldozer), which are all AI devices/ toys.

The study concluded that almost 80 per cent of the children thought that Alexa would always tell the truth.

Let me repeat that — 80 PERCENT OF THE KIDS BELIEVE THAT THE AIS, CREATED BY COMPANIES WHO WANT TO SELL PRODUCTS, WILL ALWAYS TELL THE TRUTH.

The study went on to conclude that some of the children believed they could teach the devices something useful, like how to make a paper plane, suggesting they felt a genuine, give-and-take relationship with the machines.

All of these conclusions beg the question, how can we teach kids (and some adults if we’re being honest) about security and privacy in regards to new technology? How do we teach kids about commercialism and that as innocent as they may seem, not every device was designed altruistically?

We are quickly approaching an age where the strangers we introduce our kids to aren’t the lurkers in the park with the missing dog or the candy in the van, but rather, a robot voice that can tell a joke and give you the weather and order +$70M worth of miscellaneous stuff.

So now, it’s on us. Children of our own or not, we have to start thinking about best practices when it comes to teaching children about the appropriate time to trust in a computer. If the 5 year olds with smart devices are any indicator, teaching kids to be stingy with their trust in AIs will be an uphill battle.

This story was first published here in October of 2017.

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