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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

Ways to socialize safely during quarantine

(EDITORIAL) Months of isolation due to quarantine is causing loneliness for many, but joining virtual social groups from home may help fill the need for interaction.

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Quarantining, sheltering in place, staying home. We’re tired of hearing it; we’re tired of doing it. Yet, it’s what we still need to be doing to stay safe for a while longer. All of this can be lonesome. As the days turn into weeks and weeks into months, the alone time is getting to even the most introverted among us.

Solitary confinement is considered one of the most psychologically damaging punishments a human can endure. The New Yorker reported on this in a 1992 study of prisoners in detention camps in the former Yugoslavia, as well as Vietnam veterans who experienced isolation. These studies showed that prisoners who had experienced solitary confinement demonstrated similar brain activity to those who’d suffered a severe head injury, noting that “Without sustained social interaction, the human brain may become as impaired as one that has incurred a traumatic injury.”

We aren’t meant to be solitary creatures. Your “pandemic brain” is real. That fogginess, the lack of productivity, can be attributed to many things, including anxiety, but being kept apart from other humans is a big part of it too. Be kind to yourself, give yourself grace, and join others virtually. Be it an app, a class, a Facebook group, a chat room, or a livestream, someone somewhere is out there waiting to connect with you too.

The good news? We are lucky enough to live in an era of near limitless ways to interact socially online. Sure, it is different, but it is something. It’s important. The best thing about this type of social interaction is being able to hone in on your specific interests, though I’d caution you against getting caught in an online echo chamber. Diversity of interests, personality, and opinion make for a richer experience, with opportunities for connecting and expanding your worldview.

Here are a few suggestions on ways to socialize while staying home and staying safe. Communicating with other humans is good for you, physically and mentally.

Interactive Livestreams on Twitch:

Twitch is best known as a streaming service for video game fans, but it offers multiple streams appealing to different interests. This is more than passive watching (although that is an option, too) as Twitch livestream channels also have chat rooms. Twitch is fun for people who like multi-tasking because the chat rooms for popular livestream channels can get busy with chatter.

While people watch the Twitch hosts play a video game, film a live podcast, make music or art, mix cocktails, or dance, they can comment on what they’re watching, make suggestions, ask questions, crack jokes, and get to know each other (by Twitch handle, so it is still as anonymous as you want it to be) in the chat room. The best hosts take time every so often to interact directly with the chat room questions and comments.

Many Twitch channels develop loyal followers who get to know each other, thus forming communities. I have participated in the Alamo Drafthouse Master Pancake movie mocks a few times because they are fun and local to Austin, where I live. Plus, in my non-quarantine life, I would go to Master Pancake shows live sometimes. The chat room feels familiar in a nice way. While watching online is free, you can (and totally should) tip them.

Online trivia in real time:

There are some good options for real-time online trivia, but I’m impressed with the NYC Trivia League’s model. They have trivia games online on Mondays, Wednesdays, Fridays, and Sundays. The NYC Trivia League seems to have figured out a good way to run the game live while keeping answers private from the other teams. They run games on Instagram Live with a live video of the host, and participants answer via the question feature. Clever!

Online book club:

First I have to shout out my Austin local independent bookstore, BookPeople, because they are fantastic. They run book clubs throughout the year, along with readings, book signings, and all things book-related. BookPeople hosts several online book clubs during these lockdown days, and most people will find something that appeals to them.

I’m also impressed with this list from Hugo House, a writer’s resource based out of Seattle. This list includes Instagram and Goodread book clubs, book clubs for Black women, rebels, and poetry lovers. The Financial Diet recommends the Reddit book club, if you are comfortable with the Reddit format. Please note that it’s a busy place, but if you like Reddit, you already know this.

Cooking class or virtual tasting:

This is doubly satisfying because you can follow these chefs in real time, and you end up with a meal. There are a couple on Instagram Live, such as The Culinistas or Chef Massimo Bottura.

You can also participate in virtual tastings for wine, whiskey, or chocolate, though you will have to buy the product to participate in the classes (usually held over Zoom or Facebook Live). If you are in Austin, Dallas, or Houston, I recommend BeenThere Locals. The cost of the course includes the wine, spirits, or cooking kit in most cases, and all of the money goes to the business and expert hosting the class.

Look for your favorite wine, spirits, cheese, chocolate makers, and chefs that are local to you to find a similar experience. Most either prepare the class kit for pickup or delivery within a local area.

Quarantine chat:

To interact with another quarantined person seeking social interaction, there’s Quarantine Chat. Quarantine chat is one of the ways to connect through the Dialup app, available on iOS and Android devices. Sign up to make and receive calls when you want to speak with someone. The Dialup app pairs you randomly with another person for a phone conversation, at a scheduled time, either with anyone or with someone with shared interests.

Quarantine chat takes it a step further with calls at random times. When your quarantine chat caller calls, you will not see their number (or they yours), only the “Quarantine Chat” caller ID. If you are unable to pick up when they call, they will be connected with someone else, so there is no pressure to answer. It’s nice to hear someone else’s voice, merely to talk about what you’ve been cooking or what hilarious thing your pet is doing.

Play Uno:

Uno Freak lets people set up games and play Uno online with friends or strangers. Players do not need to register or download anything to play. Uno Freak is web-based.

Talk to mental health professionals:

If your state of loneliness starts sliding toward depression, call someone you can speak to right away to talk over your concerns. When in doubt, call a trained professional! Here are a few resources:

  • National Alliance on Mental Illness (NAMI): The NAMI HelpLine can be reached Monday through Friday, 10 am–6 pm, ET, 800-950-NAMI (6264) or info@nami.org.
  • Crisis Text Line: Text HOME to this text line 24/7 for someone to text with who will also be able to refer you to other resources: U.S. and Canada: 74174, U.K. 85258, Ireland: 50808.
  • Psych Central has put together this comprehensive list of crisis intervention specialists and ways to contact them immediately.

There are many ways to connect even though we are physically apart. These are just a few real time ways to interact with others online. If you want something a little more flesh and blood, take a walk around the block or even sit in a chair in front of where you live.

Wave at people from afar, and remember that we have lots of brilliant doctors and scientists working on a way out of this. Hang in there, buddy. I’m rooting for you. I’m rooting for all of us.

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Opinion Editorials

Working remotely: Will we ever go back? (Probably not)

(OPINION / EDITORIAL) Now that the pandemic has opened the door on working remotely, there’s no way we’ll put the genie back in the bottle. But, here’s some ways you can adapt.

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Woman working remotely on her couch with a laptop on her lap.

When it comes to working remotely, will the toothpaste ever go back in the tube?

Mark Zuckerberg recently said, “We are going to be the most forward-leaning company on remote work at our scale…” By 2030, Zuckerberg anticipates that over half of Facebook’s workforce will be remote. Many other companies are jumping on the work from home bandwagon. Working remotely has helped many businesses manage the pandemic crisis, but it’s unsure what form remote working will take over the next 10 years.

We know that employees are responding positively to WFH, as reported in this article – Employers: Lacking remote work options may cause you to lose employees. As offices transition to a post-COVID normal, here are some things to consider about your office and remote work.

What does your business gain from allowing workers to WFH?
The future of remote work depends on a conscious application of WFH. It’s not just as easy as moving employees out of the office to home. You have to set up a system to manage workers, wherever they are working. The companies with good WFH cultures have set up rules and metrics to know whether it’s working for their business. You’ll need to have technology and resources that let your teams work remotely.

Can your business achieve its goals through remote work?
The pandemic may have proved the WFH model, but is this model sustainable? There are dozens of benefits to remote work. You can hire a more diverse workforce. You may save money on office space. Employees respond well to remote work. You reduce your carbon emissions.

But that can’t be your only measure of whether remote work fits into your vision for your organization. You should be looking at how employees will work remotely, but you need to consider why employees work remotely.

The work paradigm is shifting – how will you adapt?
The work environment has shifted over the past century. Remote work is here to stay, but how it fits into your company should be based on more than what employees want. You will have to work closely with managers and HR to build the WFH infrastructure that grows with your organization to support your teams.

We don’t know exactly how remote work will change over the next decade, but we do know that the workplace is being reinvented. Don’t just jump in because everyone is doing it. Make an investment in developing your WFH plan.

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Opinion Editorials

The truth about unemployment from someone who’s been through it

(EDITORIAL) Unemployment benefits aren’t what you thought they were. Here’s a first-hand experience and what you need to know.

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Have I ever told you how I owed the government over two grand because of unemployment in 2019, and only just finished paying it back this year?

This isn’t exactly the forum for memoirs, but this is relevant to everyone. So I’ll tell y’all anyway.

It all started back in 2018 when I came into work early, microwaved my breakfast, poured coffee, and got pulled into a collaboration room to hear, “We love you and your work, April, but we’ve been bought out and you’re being laid off.”

It was kind of awkward carrying my stuff out to the car with that Jimmy Dean sandwich in my mouth.

More awkward still was the nine months of unemployment I went through afterwards. Between the fully clothed shower crying, the stream of job denial, catering to people who carried rocks in their nostrils at my part-time job (yes, ew, yes, really), and almost dying of no-health-insurance-itis, I learned a lot!

The bigger lesson though, came in the spring of the following year when I filed my taxes. I should back up for a moment and take the time to let those of you unfamiliar with unemployment in Texas in on a few things that aren’t common knowledge.

1: You’re only eligible if you were laid off. Not if you had quit. Not fired. Your former company can also choose to challenge your eligibility for benefits if they didn’t like your face on the way out. So the only way you’re 100% guaranteed to get paid in (what the state calls) “a timely manner”, is a completely amicable split.

2: Overpayments have to go back. Immediately. If there’s an error, like several thousand of Texans found out this week, the government needs that cash back before you can access any more. If you’re not watching your bank account to make sure you’re getting the exact same check each time and you have an overpayment, rest assured that mistake isn’t going to take long to correct. Unfortunately, if you spent that money unknowingly–thought you got an ‘in these uncertain times’ kinder and gentler adjustment and have 0 income, you have a problem. Tying into Coronavirus nonsense is point three!

3: There are no sick days. If ever you’re unable to work for any reason, be it a car accident, childbirth, horrible internal infection (see also no-health-insurance-itis), you are legally required to report it, and you will not be paid for any days you were incapacitated. Personally, my no-health-insurance-itis came with a bad fever and bedrest order that axed me out of my part time job AND killed my unemployment benefits for the week I spent getting my internal organs to like me again. But as it turned out, the payment denial came at the right time because–

4: Unemployment benefits are finite. Even if you choose to lie on your request forms about how hard you’re searching for work, coasting is ill-advised because once the number the state allots you runs out…it’s out. Don’t lie on your request forms, by the way. In my case, since I got cut from my part-time gig, I got a call from the Texas Workforce Commission about why my hours were short. I was able to point out where I’d reported my sickness to them and to my employer, so my unpaid week rolled over to a later request date. I continued to get paid right up until my hiring date which was also EXACTLY when my benefits ran out.

Unemployment isn’t a career, which is odd considering the fact that unemployment payments are qualified by the government as income.

Ergo, fact number five…

5: Your benefits? They’re taxed.

That’s right, you will be TAXED for not having a job.

The stereotype of the ‘lazy unemployment collector burdening society’ should be fading pretty quickly for the hitherto uninformed about now.

To bring it back to my story, I’d completely forgotten that when I filed for unemployment in the first place, I’d asked for my taxes NOT to be withheld from it–assuming that I wasn’t going to be searching for full time work for very long. I figured “Well, I’ll have a tax refund coming since I’ll get work again no problem, it’ll cancel out.”

Except, it was a problem. Because of the nine month situation.

I’d completely forgotten about it by the time I threw myself into my new job, but after doing my taxes, triple checking the laws and what I’d signed, it was clear. Somehow…despite being at my lowest point in life, I owed the highest amount in taxes, somewhere around the 2k mark.

Despite being based on a system that’s tied to how much income you were getting before, and all the frustrating “safeguards” put in place to keep payments as low and infrequent as possible, Uncle Sam still wants a bite out of the gas-station Hostess pie that is your unemployment check. And as I’m writing this, more and more people are finding that out. And even as we enter 2021, there is still more to be aware of – we’re not out of the woods yet.

I’d like to end this on a more positive note… So let’s say we’ve all been positively educated! That’s a net gain, surely.

Keep your heads up, and masked.

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