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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.





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:


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.


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:


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 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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  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 I pitched the CEO of Reddit onstage at SXSW with no notice

(EDITORIAL) This is the story of how luck, networking, preparation and being at the right place at the right time got me onstage at SXSW with no notice, to pitch Steve Huffman, the CEO of Reddit and co-founder of Hipmunk.



daniel senyard pitching the CEO of Reddit

After graduating from Austin’s Capital Factory accelerator earlier this year, Shep, my travel tech startup was in need of our first office. The team had grown to more than seven people, and while coffee shops had sufficed for product meetings when there were only four of us, we’d started getting dirty looks when we began putting tables together and colonizing entire corners. We looked at dedicated offices, office shares, and coworking spaces like WeWork. When it came down to it, at this phase, Capital Factory was the right choice for our company.

We’d already raised our seed round with Capital Factory with several of their partners as major investors, so we decided that, as a startup in Austin, we had to be where the press, investors, and partners were most likely to show up. Past visitors to Capital Factory have included Barack Obama, Apple CEO, Tim Cooke, Microsoft CEO, Satya Nadella, and many more. We knew that we might be able to get a space for less, but the community, education, and flow of people through the space optimizes our startup for serendipity.

Fast forward to this year’s SXSW and I was meeting with team members on the fifth floor when I received a text telling me that Steve Huffman, the CEO of Reddit and co-founder of travel startup Hipmunk, was downstairs and he had just said that creating a travel tech startup is the most difficult thing he’s ever done.

“The CEO of Reddit is talking right now and saying that doing a travel startup is the hardest thing he’s [e]ver done. You should tweet at him.” said the first text. “Baer just told him about Shep,” came the next one, referencing Josh Baer, the founder of Capital Factory, who was conducting the interview downstairs.

So, being in the right place (or at least four floors above) at the right time, I rushed downstairs and made eye contact with Josh before taking a seat in the back of the room. I planned to wait until after the talk and fight the crowd to introduce myself as the person Josh had mentioned and hand Steve a business card.

SXSW had other plans for me.

“So, we only have about three more minutes, and because SXSW is all about doing things on the fly and taking opportunity as it finds you, I’m going to ask Daniel Senyard from Shep, who’s just joined us, to come up and pitch Steve for 90 seconds,” said Josh from the stage before getting up and giving me his seat. I proceeded to tell Steve how Shep allows smaller businesses to set up and track travel policies and team spending on travel websites like Orbitz, Expedia, and Southwest through a free browser extension. My hands were shaking, but I got it all out in about the right amount of time, and he immediately responded by saying, “I love the Premise.”


Steve asked some questions about customers (closed Beta) and target market (companies that spend less than $1M in annual travel) before enquiring whether Shep had to have relationships with online travel agencies (OTAs) like Expedia and Orbitz or Meta Searches like Kayak. I said no, but that through our strategic investors, I’d spoken to many of them.

“I’m trying to grill you, but I honestly think they would love this,” he said, stating how OTAs and other travel sites lose lots of bookings when companies grow and move from letting their team book on their favorite websites and instead mandate bookings be made on enterprise booking tools like Concur or AmEx Travel. Now Steve knows this world better than almost anyone, having co-founded an OTA that was actually acquired by the very company he says OTAs lose business to, Concur!

After a few more comments, I thanked him and took the opportunity to slip him a business card before heading back to my seat.

Now, to some, this may seem like pure luck but these moments of serendipity take years to create.

While there are several factors at play, it all essentially boils down to just showing up every time. As Josh said to me afterward, “Luck is when preparation meets opportunity,” and I’ve been preparing and pitching non-stop (albeit within three different businesses) for seven years. Over those seven years and three companies, I’ve slowly built up a vast network of connected people who will text me when my name is mentioned and will invite me onstage when they see an opportunity.

While I didn’t nail it, I didn’t flub my pitch because I’ve rehearsed various forms and lengths of pitches in mirrors, while driving, and to every family member that can stand it. I’ve taken my bumps and done my reps while probably pitching 200 times. I even won a contest and was sent over to Oslo to represent Texas at Oslo Innovation Week back in 2015. But even after pitching at every chance I’m given, I still get nervous, and my hands are still a little shaky while writing this, an hour after it all happened.

It was an amazing opportunity, and I’m very thankful to Henry for texting me, Josh for inviting me onstage, and John and Henry for recording the whole thing. While cool moments like this are certainly highlights, it’s just a step towards building brand recognition for our solution. Now I need to follow up and see if I can get Steve to join our advisory board…

Also read “Why your being the ‘Uber of’ or ‘Netflix of’ is bad for your business” by Daniel Senyard.

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Opinion Editorials

Twitter’s awful leadership is why the social network is failing

(EDITORIAL) Will Twitter’s leadership allow spam and hatred to continue being the albatross around their neck? Probably.



twitter social media posts content twitter

Last year, Twitter celebrated their first time making a profit, after over a decade of existence. Hooray? Perhaps the question of how successful twitter has (or has not) been has to do with their leadership crisis, earning a reputation of indecisiveness and a tendency to make things more complicated than they need to be.

As Vanity Fair asserts, Twitter is losing the Internet war, and we can’t help but agree. From the troubles that come from a highly dysfunction of management with three CEO changes, and not one cohesive vision.

A simple Google search can tell you that Twitter’s fake news, fake accounts, and fake people problem is a hot spot on the public eye. Del Harvey, Twitter’s Head of Trust and Safety deals with the landscape of Twitter – the ominous mountain of Donald Trump and the Russians, Nazis, hackers, and harassers that has overwhelmed Twitter like a post-apocalyptic army of bots that would be right at home in a J.J Abrams movie.

Harvey is talented, but the company lacks a strong technology solution to these problems, and clearly lacks a clear set of rules (i.e an action plan) for tackling these issues (what is abuse on Twitter? What should be censored? What is Twitter’s responsibility?). The lack of clarity and the shifting definition of what constitutes a problem in regards to content on Twitter, follows a consistent trend set by Jack Dorsey in 2011 – when asked what Twitter is, he responded, “We don’t have an answer.”

Not much has changed, I guess.

What is clear is the lesson that we can take away.

A company cannot be successful without clear vision, strong leadership, and a sense of urgency. Twitter is a large company, therefore may appear successful to those unaware of their finances, but taking over a decade to finally make a profit would have put most companies out of business. Nearly a decade ago…

Their problems run rampant, and are growing exponentially with more and more fake accounts and abuses. The social media giant needs a clear understanding of what abuse is and needs to stick to it. Leadership needs to go for the wins and formulate a clear, decisive vision and a framework for how to get it done. And it needs to do so quickly – an urgency to fix the image problem that not only affects the public, but the recruiting pool. And the next pool to grow sour will be the investors, who had to wait for over 10 years to see any profit.

If the mega brand expects to keep changing the landscape like it has, it seems like they have a lot to change. It’s time for Twitter to get out of its awkward phase and clear up the very muddy pool it’s in today. Or, as they say, get off the pot.

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Opinion Editorials

How employee perks give competitive companies a serious edge

(BUSINESS) Breakneck speeds of innovation are now the norm in business, and the most competitive are offering employee perks in the name of progress.



employee perks

The nature of business is simple when you boil it down: get the edge and monetize it. To keep the doors open, companies either have to do one thing extraordinarily well that transcends trends or innovation, or they must continually progress and change the rules of their platform with each release.

Case in point, there’s little to improve on when it comes to a Chicago hot dog or a New York slice; these culinary feats will forever be favored because they’re ingrained into the culture as a staple. A pair of Levi’s jeans or Vans sneakers don’t need to innovate, the classic appeal of the brand sells itself.

Technology is a different animal. Innovation is everything.

People wanted a new app or SaaS (Software as a Service) tool yesterday, and they want to hit a button on their phone to get it. We want new apps to automate mindless tasks, and we’re always looking for a way to cut paperwork when it applies to everyday life. We want to pay bills with a click or know who’s ringing the doorbell via the camera attached to our network. We love Nest because it controls our house and who doesn’t love a Spotify playlist connected to a wireless speaker out by the pool?

Companies bending over backwards to create faster and with more of a wallop allowed for these breakthroughs.

Because anything technology-related is crushing financially-speaking, there’s a constant hunger for talent. And talented developers, marketers, SEO junkies, office managers, all use the hyper-competitive talent market to their advantage. If a new job pops up that pays more with better benefits, people will bounce without so much as more than two-week notice and a “sorry, not sorry” letter of resignation.

The company loyalty of the past is long, long gone.

Companies like Twitter or Google throw the kitchen sink at their teams to keep them happy and offer everything from education stipends for their kids, dollar for dollar 401(k) matching, improv classes, catered gourmet meals, and even monthly mani-pedis. These things seem crazy, but they’re small measures to make sure the best talent doesn’t walk for a huge reason – they need the best minds to keep pushing the brand to new heights.

Make no mistake; if a SaaS tool is dominating the market, there’s one right behind it, ready to pounce at the first sign of weakness. Because of the dog eat dog landscape, retention is critical. If the best members of a team move on after a year or two, pushing the brand forward becomes harder and harder because there’s a rotating door. Teams have to find ways to keep their staff engaged not only through work that matters and a thriving culture, but the perks offered need to be sticky and make it hard for employees to walk away from.

One of the more revolutionary retention methods of the last few years has been student loan debt repayment, and as a result, teams are staying together, longer.

The probability market for student loan repayments is massive.

Nearly 70% of new grads walk off the stage with at least 25K owed to private and federal institutions and the debt clock is ticking upwards toward $1.4 Trillion, with a T.

Because student loans are a soft target, it’s an easy win. Often touted as the new 401(k) for millennials, many companies are offering to match dollar for dollar with their teams or just make a monthly contribution on their employee’s behalf. For the companies, this move is killer because of simple math: the average student loan bill is low thanks to all of those deferments, loan interest rates, etc.

In some cases, the loan amount could be as low as a $200 monthly contribution, which is easy for an enterprise-level businesses pocketbook. The employee’s student loan is out of sight, out of mind, and often with a few bucks extra, moving the debt needle faster. The best part: the employee feels like the company has a vested stake their well-being and future growth.

One of the easiest wins for a company is how they view time spent in the office. Because wifi is everywhere and checking email on an iPhone is only a swipe away, more and more companies allow for staff to work remote. Life happens and some days, sitting at the desk is a real wrench in the gears if the dog needs to go to the vet or the AC goes out in mid-July.

A change of scenery helps, and for many people (and let’s be honest), banging out six hours of good work is a more realistic output than drifting through eight hours of “sort of” productivity. Fully 53 percent of workers want free time over a raise.

Companies with a liberal work from home policy lead the charge in perks employees want. Same goes for generous vacation time policies. Even if the average employee doesn’t come close to using their allowance, the central thread that matters is the freedom of knowing they can.

Another way to put a lid on employee churn? Companies are taking a real swing at healthcare.

Because affordable medical care isn’t always available, many companies are covering significant portions of what’s taken out of an employee’s check. Some ultra-progressive businesses like Google or Atlassian even offer 100% covered healthcare for their American workforce. While universal healthcare would make sense, many companies are picking up the slack and are keeping their employees healthy.

Employees, especially millennials, see these moves toward a workplace with a work/life balance, but also as a place that cares about their wellbeing. Gone are the days of death by a thousand papercuts during the workweek. Today’s workforce knows what they’re after and it’s up to companies to decide if they’re willing to play ball to make that work.

Progress is everything in business and if companies are looking to continue to lead trends or upend the status quo, they can’t have their brightest and best looking toward the horizon wondering what else is out there. Perks most definitely matter.

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