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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

Interviews shouldn’t include ‘how did you improve yourself?’ during or after COVID

(EDITORIAL) Emotional Intelligence will be even more needed in recruiting talent and Interviews shouldn’t look the same as they did pre-COVID.

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Question: Remember that last time you dealt with a global pandemic?
Answer: No, because most likely, none of us have.

This is new for many of us. We’ve likely each felt the rollercoaster of emotions or even grief as our ways of lives changed, some were quickly moved to working remotely while others were deemed essential workers and were not able to work from home. It was disheartening for many that no matter what position they were put in, it was with no choice. And then there were the millions of jobs eliminated as well, affecting people’s ability to pay their bills and fulfill their own safety, and even basic needs. Everyone entered survival mode, and it looks the same yet different depending on your unique situation.

All of this comes at a price that seems hard to predict. Moving forward will be different albeit many of us don’t know exactly how yet, and are imagining a wild range of possibilities. Now that the US unemployment is up to 14.7%, there will also be many people job searching and finding themselves in interviews answering the typical “Tell me about yourself”, or “Tell me about a time when…” Most likely many candidates will be able to tell you about their previous work experiences, but here’s what we ask of future employers:

  1. Be more understanding (less judgmental or pushy) if you see folks looking to switch careers, or you see Small Business Owners applying for your open position. This may have been an opportunity for them to explore another avenue, or it may have been forced if their previous type of position (or business) is no longer available. Of course, you can ask them why they are interested in the position, but try not to look down your brow if they seem to be an unlikely or unexpected candidate.
  2. Do not ask what this candidate did to be productive during the quarantine. Just surviving may have been enough. If they did take up a new hobby, learn a new coding language, write a book, or start a new work out program, I’m going to guess it will come out in conversation. If they literally had to utilize the majority of their energy for coping skills, that should be enough. Don’t believe all the sourdough starters you saw on Instagram (and why has banana bread been so popular?)
  3. Try to avoid some of the ridiculous questions that tell you nothing about their skill set. We get it, interviews can be boring so you thought it might be fun to ask the interviewee for their favorite joke such as “What 5 items would they want on a deserted island?” or “What fruit they would be in a smoothie?” This has been an extremely traumatic situation for many. The goofy questions are not really applicable, and will only lead to additional stress after they leave thinking over if they “got the answer right”.
  4. Please do your best to really utilize this time to hire with diversity and inclusion in mind. Do not dismiss someone because they have several years of experience in another sector or because they didn’t attend the Ivy League school. If they applied, chances are they do have an interest in your company, so exploring how they can be a great fit, bring in a refreshing perspective, and may be a better option than hiring something that exactly matches the job description (which may be hard to find anyway) is a smart idea. Please be open to a variety of ages, races, and sexes.

Interviews in general can conjure up lots of negative feelings, anxiety, and stress. Most people don’t like the stress of interviews but yet they have accepted that this is part of the job search process. There will be even more people out there looking again, and likely not because they want to. The mental toll this is taking should be handled with care. As this Ask a Manager article beautifully states:

“If someone is teaching themselves a new language or building their coding skills during the pandemic, that’s great. But to present it as an expectation during a time when millions of people are struggling to keep their homes, feed their families, and stay alive — to imply people might be less worthy of employment if they needed to focus on their finances and their safety during a f’ing global crisis — no. No. Something has gone very wrong in anyone who believes that.”

The companies with openings may have an advantage with many available and interested candidates but they also have a huge responsibility to not take this lightly; don’t waste people’s time, and don’t ask really INSENSITIVE questions. If you need help reviewing your questions or interview processes, it may be great to assign someone to review Emotional Intelligence tips and see if they can incorporate that in to what you normally do.

Emotional Intelligence is touted as the most required skill of the future (that may have been pre-pandemic), which is, “the capacity to be aware of, control, and express one’s emotions, and to handle interpersonal relationships judiciously and empathetically.” This means really reading the room and not putting candidates in an awkward position, or placing unrealistic expectations on them. Oh, and please have a little grace with those virtual interviews – that is also new to some people, so maybe cut them some slack if the nerves have really kicked in.

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Opinion Editorials

Press mute when you’re sobbing on a Zoom (and other COVID mental health observations)

(EDITORIAL) COVID-19 had been hard on everybody, but a group often not thought of are those who have mental illness, they struggled in the world before, what about now?

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Editors note: This editorial was written anonymously and brings important insight into an issue not often brought up or thought about. We at The American Genius believe this is an important topic to keep in mind about an often silent group that may think they are alone and face extra challenges everyday.

Whether you’re a veteran of working from home, or if you are someone newly learning that muting your mic is important, welcome. Working from home is both rewarding and challenging. This is not an instruction manual on how best to work from home. It’s a guide to working from home and not losing an already delicate mind to existing or potential mental illness.

Some ideas I’d like to convey should ring true now and in the future. However, one aspect is unique to now. I’m writing from the time of Coronavirus, also known as COVID-19. Workers have been divided into two groups, “essential” and “non-essential.” Those considered non-essential were sent home with hopes of slowing the spread of the disease. Those deemed essential, like doctors and grocery store clerks, were considered too vital to our way of life to stay home. One group unable to work, the other unable to stay home.

Then there’s us. A quasi third group. Those who have a job that is so tied to the glowy screen in front of them that it could be performed, in theory, from any location with a computer and internet. Theory was put to practice as many people – accustomed to commuting each day – suddenly learned the joy and perils of working in their jammies.

Working from home is not a new idea, but there had never been such a reason to push so many people to practice it. Some companies, historically, felt uncomfortable with workers staying home. With the arrival of COVID-19 they had a change of heart and now insist on it. Once and for all we will find out which meetings could have just been an email.

The pandemic has been hard on many people. If one is able to avoid the disease itself, they are still subject to staying in and staying isolated. Many never leave their home except for groceries or prescriptions. Some people thrive in this situation, but for others, it puts pressure on the mind and spirit. What about those who already have such a toll on their state of mind due to mental illness?

Working a job, or doing anything, with mental illness can be its own challenge. Mental illnesses and disorders that can affect your work include depression, PTSD, panic disorder, agoraphobia, and borderline personality disorder – just to name a few. So what happens when those who suffer from one or more of these mental health issues have to stay at home every day for work?

There are advantages. If a moment strikes you when you can’t be your professional self, you can often step away and have that cup of tea and peace of mind. Going heads-down and focusing on your task is where you might thrive. However, working from home can still mean having dead-lines and going to live meetings. Needing help or coordination from distant workers can quickly tax your social resources.

There will be a great deal of communication through multiple methods ranging from group video calls to instant messages. Things can get out of control quickly if you don’t set limits. When you want to reach someone it may be unclear which method to use. “Should I email or call them?” you might find yourself pondering. This can frustrate you to the point of not taking action at all. Getting a handle on the lines of communication is vital.

Request to have as few modes of communication as possible. You might find yourself responding to text messages, reading emails, taking phone calls, or answering instant messages from WhatsApp, Slack, or more. It will certainly create a growing obsession towards monitoring notifications rather than actual work.

If a consensus can not be found, give your coworkers clear communication on how you want to be reached, and ask them what they prefer. Needing to check the notification on so many apps is a recipe for a panic attack and overwhelming yourself.

Let’s consider meetings. You’ve seen it by now – or you will – a Zoom meeting with people saying “hello hello, is this thing on?” It’s amazing that in a time we all have computers in our pocket, that it’s still hard to coordinate things like your own audio, video, and even lighting conditions. If you suffer panic attacks it’s best not to be unknotting your earphones while the CEO is about to make a big presentation. Get ready early, check that you can be heard and can hear others. If another meeting is about to start, leave on time. Respect the start time of that new meeting. Overlapping meetings that never end are a sign that boundaries are not being observed. Boundaries are hard for most, but if you have a mental illness they can feel impossible to set.

On a similar note, let’s look at the start and end of work. Being on time is important. Wait, you just need to roll out of bed and turn on a computer? Great, but is it though? You get there just in time to say the proverbial “here!” If you are not ready to work, you are falling behind. Extend this idea to the day itself. When is the day over? Did you start a little late so you feel obligated to work a little later? Do you have a time when other people can expect that you won’t get their message until the next business day? Does working-from-home turn into working-all-the-time?

Getting to work on time also means leaving work on time. Those who have had a reactive or abusive partner know that setting boundaries can escalate situations instead of repairing them. Telling your boss “I’ll like to be offline after 6:30.” can result in the fear that you’ll just be told to close your computer and never return. But these are the boundaries one must set. Finding this work-life balance is doubly important for the mentally ill because we need to reserve time for ourselves for repair and growth.

Among all my reminders to you, remember to leave the house. In the time of COVID-19, this gets convoluted because “Stay home, stay safe!” is the phrase of the day. Having issues going outside can be a part of mental illness. In extreme cases, some people are afraid to go out the front door. With nearly everything being available for delivery now possible to stay home for days, but this is not a good recipe for mental health. When your day ends – and make sure it ends – get some fresh air and possibly some exercise.

Plan the rest of your day ahead of time. Look forward to it and go out and enjoy it. Day to day life is already hard with mental health issues. Don’t let working from home be another hardship. Breath deeply, take care of your mind and don’t let the mixture of home and work overwhelm you. Don’t forget your most important job is to take care of yourself.

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Opinion Editorials

5 Secrets to a more productive morning in the office

(EDITORIAL) Productivity is king in the office, but sometimes distractions and other issues slow you down. So what can you do to limit these factors?

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Regardless of whether you’re a self-proclaimed morning person or not, more efficient mornings can be catalytic in your daily productivity and output. The only question is, do you know how to make the most of your mornings in the office?

5 Tips for Greater Morning Productivity

In economic terms, productivity is a measure of output as it relates to input. Academics often discuss productivity in terms of a one-acre farm’s ability to produce a specific crop yield, or an auto manufacturing plant’s ability to produce a certain number of vehicles over a period of time. But then there’s productivity in our personal lives.

Your own daily productivity can be defined in a variety of ways. But at the end of the day, it’s about getting the desired results with less time and effort on the input side. And as a business professional, one of the best ways to do this is by optimizing your morning in the office.

Here are a few timely suggestions:

  1. Eliminate All Non-Essential Actions


    Spend the next week keeping a log of every single action you take from the moment your eyes open in the morning until you sit down at your desk. It might look something like this:

    • Turn off alarm
    • Scroll through social media on phone
    • Get out of bed
    • Eat breakfast
    • Take shower
    • Brush teeth
    • Walk dog
    • Watch news
    • Browse favorite websites
    • Get in car
    • Starbucks drive-thru
    • Arrive at office
    • Small talk with coworkers
    • Sit down at desk

    If you do this over the course of a week, you’ll notice that your behaviors don’t change all that much. There might be some slight deviations, but it’s basically the same pattern.

    Now consider how you can eliminate as many points of friction as possible from your routine. [Note from the Editor: This may be an unpopular opinion, but] For example, can you skip social media time? Can you make coffee at home, rather than drive five minutes out of your way to wait in the Starbucks drive-thru line? Just doing these two things alone could result in an additional 30 minutes of productive time in the office.

  2. Reduce Distractions


    Distractions kill productivity. They’re like rooftop snipers. As soon as they see any sign of productivity, they put it in their crosshairs and pull the trigger.

    Ask yourself this: What are my biggest distractions and how can I eliminate them?

    Popular distractions include social media, SMS, video games, news websites, and email. And while none of these are evil, they zap focus. At the very least, you should shift them to later in the day.

  3. Set Measurable Goals and Action items


    It’s hard to have a productive morning if you don’t have a clear understanding of what it means to be productive. Make sure you set measurable goals, create actionable to-do lists, and establish definitive measurements of what it looks like to be efficient. However, don’t get so caught up in the end result that you miss out on true productivity.

    “There’s a big difference between movement and achievement; while to-do lists guarantee that you feel accomplished in completing tasks, they don’t ensure that you move closer to your ultimate goals,” TonyRobbins.com mentions. “There are many ways to increase your productivity; the key is choosing the ones that are right for you and your ultimate goals.”

    In other words, set goals that are actually reflective of productivity. In doing so, you’ll adjust your behavior to come in proper alignment with the results you’re seeking.

  4. Try Vagus Nerve Stimulation


    Sometimes you just need to block out distractions and focus on the ask at hand. There are plenty of ways to shut out interruptions, but makes sure you’re also simultaneously cuing your mind to be productive. Vagus nerve stimulation is one option for doing both.

    Vagus nerve stimulation, which gently targets the body’s vagus nerve to promote balance and relaxation, while simultaneously enhancing focus and output.

  5. Optimize Your Workspace


    Makes sure your office workspace is conducive to productivity. This means eliminating clutter, optimizing the ergonomics of your desk, reducing distractions, and using “away” settings on apps and devices to suppress notifications during work time.

Make Productivity a Priority

Never take productivity for granted. The world is full of distractions and your willpower is finite. If you “wing it,” you’ll end up spending more time, energy, and effort, all while getting fewer positive results.

Make productivity a priority – especially during the mornings when your mind is fresh and the troubles of the day have yet to be released in full force. Doing so will change the way you operate, function, and feel. It’ll also enhance tangible results, like income, job status, and the accolades that come along with moving up in your career.

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