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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

The case for compassion during Elon Musk’s tumultuous time

(EDITORIAL) Elon Musk has been under fire of late, and has opened up about his challenges, only to be ridiculed and turned into memes. We would like to offer an alternative perspective.

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Elon Musk is no stranger to adversity. The tech giant has ushered in world-changing phenomena including PayPal’s forerunner, literal space-age technology, and the sexiest electric cars on the market. It’s no surprise, then, that Musk has hit a few bumps along the way — and, unlike some unfortunately tortured souls of late, he’s mercifully forthcoming about the resulting mental health challenges.

In light of recent celebrities who have taken their own lives, now seems as good a time as any to remember that Elon Musk is important, and very much a necessary occupant of our world.

Entrepreneurs are often solitary creatures. While one can argue that anyone sitting atop an empire — especially one the size of Elon Musk’s — is never short of people to whom they can speak, the truth is that many such people find themselves isolated from the people they love and guarded against everyone else.

Given Musk’s self-admitted workaholic tendencies and his recent admissions of doubt, it isn’t a stretch to hypothesize that he feels very alone.

He couldn’t be more wrong.

In his time as an entrepreneur, Elon Musk has contributed tremendously to electric car technology. He made electric cars SEXY, for crying out loud — if that isn’t an accomplishment to be proud of, we don’t know what is — all the while working consistently to improve on a vehicle system so astounding that it broke the Consumer Report rating scale. Much of that work is directed toward making the Tesla more accessible for a wider consumer base rather than marketing it selectively (even making his patents public for the advancement of the entire industry).

Of course, manufacturing a borderline objectively perfect electric vehicle wasn’t enough, so Musk proceeded to add several SpaceX accomplishments to his résumé. While Musk’s dream of dying on Mars is still in the distant future, it’s his initiative that stands out: his ability to look at a challenge, resolve to conquer it, and then proceed to do so despite circumstances (and realistic expectations) running counter to that goal.

Regardless of how rich, successful, and/or famous you become, initiative of Musk’s caliber is one trait that is impossible to replicate, and there will always be a place for people like him in our world.

It would be naïve not to address Musk’s recent slip into erratic behavior and the countless controversies following him these days. Other sources are more than capable of disseminating and analyzing Musk’s behavior and any resulting issues, so I’ll just say this: societal pressures and the daily weight of one’s responsibilities are enough to eventually crush any entrepreneur. Add to that the high expectations to which Musk holds himself, and his breakdown in progress doesn’t need elaboration.

What it DOES need is an empathic response.

Internet memes aside, Elon Musk is still a human being who is as susceptible to the same pitfalls that accompany success as anyone else. We’ve already lost too many valuable, impactful members of society because no one recognized the warning signs in time; to lose Elon Musk wouldn’t just be to lose one of the most inspired, driven tech visionaries of the last century—it would be a global tragedy.

For our part, we will continue to appreciate, support, and care for Elon Musk — not because he deserves praise, but because he deserves compassion. We encourage you to do the same.

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How to keep your diverse team from fleeing to competitors

(EDITORIAL) There’s only one way to make your diverse office an inclusive one, and it doesn’t involve any graphs.

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Diversifying your workplace is a necessity both for well-rounded results, improved product feedback, and socially acceptable appearances; unfortunately, too many businesses focus on the latter while completely neglecting the former. There’s only one way to make your diverse office an inclusive one, and it doesn’t involve any graphs.

The bottom line for inclusivity is that you must impart ownership from day one. Having a diverse workplace is useless if you don’t take advantage of the talent you have in order to flesh out and enrich your process, and failing to use your diverse employees’ unique skillsets in practice is a guaranteed way to lose those skillsets to a competitor.

Sadly, fostering a sense of belonging is far easier said than done, and hokey “solutions” like team-building exercises and PowerPoint presentations about inclusion only serve to further the gap between your original team and your diverse team members. Instead of discussing full implementation of your workforce’s talent over coffee, you should just do it.

The easiest way to ensure that your employees all feel included is by giving equal weight to their input. This isn’t to say that your employees need to be patted on the back even when they’re spouting nonsense; it just means that your role should include listening to everyone’s point of view rather than favoring a specific person or group of people — a problem that is all too easy to develop and nearly impossible to see until someone points it out.

Of course, diversification can also refer to accepting ideas which run counter to your own. Nothing will shut down office morale faster than a boss who doesn’t accept multiple channels of consideration.

Remember that your team’s diversity is valuable BECAUSE of its differences in perception, not in spite of them.

Rather than practicing diversity on paper while utilizing the same process, look at your new employees as individual opportunities to branch out.

It’s important to remember that diversity isn’t just about having different genders or races in your office. While you should strive to keep your employees’ cultural backgrounds as widespread as possible, actual diversification results when you’re able to use those employees’ unique abilities and experiences to create a truly multifaceted product.

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Opinion Editorials

The strong case for Texas being technology’s next frontier

(EDITORIAL) Everyone loves Tacos and tech in Austin, but Texas has far more to offer – here’s how the various cities will create the next mecca for the tech world.

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Despite what the movies have told you, Texas is not the place you think it is. Sure, we’ve got cowboys, brisket, and a lot of BBQ, but the Lone Star State is much, much more than clichés. Over the last few decades, Texas has been gaining steam as one of the premier places to live in the country.

While yes, people love a good chicken fried steak or are always looking for an excuse to sneak over to their favorite grocery store, HEB, Texans aren’t sitting idly by when it comes to tech – they’re grabbing the industry by the horns.

Thanks to the state’s business-friendly tax breaks, a year-round predominantly warm weather climate, and a strong state culture, the popularity of Texas makes a lot of sense: Houston, which was once considered a third tier city is about to overthrow Chicago as the third largest in the nation, while also being lauded as our most diverse city.

Let’s repeat it, for all the people in the back: Houston, Texas is more diverse than Los Angeles, or New York.

Affordable neighborhoods are popping up across Houston, which are attracting immigrants from every culture looking for their slice of the American Dream. Houston is seeing explosive growth and a cultural shift away from being a town built on strictly fossil fuels, but now, startups, tech, and umbrella industries are finding their niche in the state’s biggest urban area. Only New York is home to more public companies.

Houston’s medical sector ranks with some of the top care in the world. And with those elite doctors, come the innovative pharmaceutical and medical companies, and the tech that supports them.

When you look at the top twenty metro areas to live right now in the country, four of those cities are in Texas. While some of those reasons are affordability and the signature Texas heat, the state is seeing new residents thanks also to a healthy job market. Since 2010, Texas has added 12.6% more residents, double lapping California’s growth of 6.1%.

Texas’ workforce is bigger than 46 states in the union total population and has doubled in job growth, productivity, and new deals are being struck daily. Texas’ impact on the tech sector is indisputable: Texas has exported more technology than California, again.

Deep in the heart

Startup culture is alive and well in Austin, but while some of our startups are finally beginning to draw VC attention away from Silicon Valley, we know how to slug it out in the land of the bootstrapped beginnings. If your company can thrive in Austin, with so many talented people, and a lot of great ideas, you can make it anywhere (sorry New York, for stealing your platitude).

Austin is still a developing story. As enterprises are opening offices in the capital city, this is helping VCs along the coasts see Austin’s potential as a hub of ideas. The city is still behind the bay area for risk-taking ventures, but given the current climate of investors, there’s a sea change happening.

Giants like Apple, Atlassian, Oracle, Dell, Amazon, Samsung, Facebook, and Google are all occupying space in buildings across the Austin skyline. Enterprise companies are investing heavily into the Austin market, and there are zero signs of a slow down. If you need further proof, just look at the traffic on any of the city’s major highways during rush hour.

Dallas is making a hard play at attracting the top-tiered companies as well. When Amazon head honcho Jeff Bezos announced put out a call for bids for Amazon’s HQ2, many cities made a play for the site, but now that the final cities have been chosen, both Austin and Dallas both stand to score the shopping monolith.

Oculus, TopGolf, and startups like Veryable, Dead Soxy, and Artist Uprising are attracting some of the brightest minds to the Dallas/Fort Worth metro area.

South Texas joins the party

San Antonio is quietly building a case for a burgeoning tech scene, too. It’s not quite there yet on the enterprise or startup level, but the city is widely known for one thing – cybersecurity. Outside of Washington D.C., San Antonio is known as “Cyber Security City USA” to folks in the black hat scene.

San Antonio logged the most substantial growth of all of the Texas cities, adding over 250,000 new residents in 2017 alone. Thanks to a robust military presence, San Antonio is quietly attracting more and more security-minded firms, a feat that’s unique in comparison to what the rest of the state is offering. Military-friendly banking institution USAA is headquartered in San Antonio, as is grocery chain HEB, and Whataburger, with all three companies investing heavily into user experience and mobile applications (aka technology).

If Amazon decides on HQ2 in either Dallas or Austin, that will signal a 200,000+ person addition to the state’s population and economy. That’s a lifetime investment into either city, wherever Bezos, and his board chooses. Coupling that possibility with the already strong presence of Southwest Airlines, Texas Instruments, and just about every major gas corporation, it’s easy to see why these moves are a huge deal. For the latter, it’s also important to note that every sector is bolstering their websites, their social media footprint, everything that can be done on a laptop is happening – one new job at a time.

As the tech scene develops and changes from a strong west coast-driven model, Texas is benefiting from the change. Many Californians are moving to Texas, which is an article to itself, but one thing remains: the Texas economy has never been stronger, and it’s only improving. The story of tech in Texas is a continual work in progress.

We’re not going to overtake California next year, but we’re making a stand, and people are noticing. If the current economic growth is an indicator, the famous Dairy Queen saying is potent with it’s accuracy: “That’s What I Like About Texas.”

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