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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

Remote work is here to stay: The benefits are just too good to overlook

(EDITORIAL) Employees scream it from the rooftops and businesses don’t want to admit it: Remote work is just too beneficial to pass up- and here’s why.

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Work from home written with scrabble letters.

Remote work has been rising in popularity in the past several years. Especially following the COVID-19 global pandemic, more companies saw significant benefits for both their business and their staff that went beyond the realm of finances by allowing remote labor.

Less happily, many people lost their job during the pandemic, but they ended up having more time to put toward their passions or were compelled to get creative with their remote business ideas to ensure a consistent stream of income.

If you remain on the fence about allowing your employees to work remotely, or are considering a career shift yourself, take a look at the top four benefits of working remotely, which may sway your decision.

Better Overall Quality of Life

Allowing your employees to work remotely doesn’t necessarily mean they work from home full time. There are benefits to having your employees work in an office part of the time – say, two or three days – and working from home, in more familiar surroundings, the rest of the week.

In this way, your workers enjoy some freedom and independence while retaining the ability to interact face-to-face with their peers. That provides human interaction, which can play a substantial role in terms of improved mental health for your staff.

Happy employees means healthier employees, which can save your outfit money in the form of healthcare costs and lost productivity. But we will get further into the cost-saving benefits a little further on.

If you’re a remote worker, you should see yourself becoming significantly more productive. But why would this be the case if you don’t have a manager over your shoulder watching your every move?

It’s true that when employees have a greater sense of independence, they also experience a significant sense of trust on the part of their employers and managers. This is one of the huge benefits of working remotely because it has a trickle-down effect on the quality and overall production of people’s work.

Can Work Anywhere with Internet

Whether you are a small business owner or have crafted your work to tailor toward a life of remote labor, this is an opportunity for someone who has dreamed of being a digital nomad. You have the ability to work anywhere in the world as long as you have access to the Internet. If you love to travel, this is a chance to spend time in various places around the globe while continuing to meet your deadlines.

Multi-member Zoom call on a Apple Mac laptop with a blue mug of black coffee next to it.

Set Your Own Hours

In some cases with remote businesses, you have the freedom to set your own hours. Content writers, for instance, tend to enjoy more flexibility with regard to when they work because a lot of what they produce is project-based rather than tied to a nine-to-five schedule.

When you’re a business owner, this can be incredibly useful when you outsource tasks to save money. You can find a higher quality of performance by searching for contractors anywhere in the world and it doesn’t limit you to workers who live near to your office.

Saves Everyone Time and Money

 In the end, remote work typically saves money for every person and entity involved. Businesses save costs in terms of not having to pay for a physical space, utilities, Internet, and other expenses. This allows you, as the owner, to spend more of your income on providing quality software and benefits for your employees so your operation runs more smoothly and efficiently.

According to FlexJobs, employees or remote business owners may save around $4,000 on average every year for expenses such as car maintenance, transportation, professional clothing in the office, or even money spent dining out for lunch with coworkers. Eventually, the costs add up, which means extra money in your pocket to take that much-needed vacation or save up for a down payment on your first home.

These benefits of working remotely only skim the surface. There are also sustainability factors such as removing cars from the roads and streets, because people don’t have to travel to and from an office; or employees missing fewer workdays since they have the ability and freedom to clock in from home.

Weigh the pros and cons as to whether remote work is right for you as a business owner or online professional. You might be surprised to find that working from home for more than the duration of the pandemic is worthwhile and could have long-lasting benefits.

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Opinion Editorials

Learning in the workplace: An exploratory mindset can foster efficiency

(OPINION) A typical business model is to run a tight ship with fear of inefficiencies, but cultivating learning can bring the best out of organizations

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Left side of brain showing calculations and right side of brain with colorful paint, resembling creativity and learning.

Despite living in an ever-changing world, many people assume that learning, be it academic or vocational, more or less stops with the conclusion of formal education. Harvard Business Review’s John Hagel III posits that an exploratory mindset, rather than fear, is the most effective way to cultivate an ongoing interest in learning – something that, as Hagel reveals, is more beneficial to a modern world than business owners realize.

Inefficiency is perhaps the most common fear of any business owner, and for good reason- Efficiency is tied directly to profits. Because of this, the majority of industries focus on establishing protocols, training employees rigorously, and then holding them to their prescribed models of operation.

And while those models can be extremely restrictive, the fear of inefficiency prevents employers from fostering creativity and personal learning, prompting some to go so far as to penalize employees who color outside of the lines. Indeed, Hagel describes one such interaction affecting an acquaintance of his: “As someone who was excited about improving the company’s supply network, she created and began testing a new intake form to assess supplier reliability.”

“She was fired for not using the standard procurement forms,” he adds.

But Hagel’s acquaintance wasn’t acting maliciously, at least by his description; she had simply identified a bottleneck and attempted to fix it using her own expertise.

We’ve written before about the importance of trusting one’s employees, implementing flexible procedures, and even welcoming constructive criticism in the interest of maintaining efficiency in a growing market. This is exactly the point that Hagel drives home – that holding employees to standards that are optimized for maximum efficiency discourages flexibility, thus culminating in eventual inefficiency.

“In a rapidly changing world with growing uncertainty, front-line workers find themselves consuming much more time and effort because they have to deviate from the tightly specified processes, so scalable efficiency is becoming increasingly inefficient,” says Hagel.

The irony of rigidly efficient practices inspiring inefficiency is clear, but the process of moving away from those structures is fraught with missteps and a general lack of understanding regarding what truly motivates employees to seek education on their own.

Let’s be clear: No one is advocating for a Montessori approach to work, one in which employees spend more time licking the walls and asking questions about the sky than they do attending to the tasks at hand. But employees who have been encouraged to explore alternative solutions and procedures, especially if they are supported through both their successes and failures, tend to be more ready to “scale” to increasingly changing demands in the work environment.

Ultimately, those employees and their expertise will create a more efficient system than all of the best-thought-out procedures and guidelines one can muster.

“Cultivating the passion of the explorer enables innovative thinking in the organization at a whole new level,” Hagel summarizes. “But harnessing that opportunity requires us to move beyond fear and to find and cultivate the passion of the explorer that lies waiting to be discovered in all of us.”

It is both Hagel’s and our own hope that businesses will find ways to appeal to that same exploratory passion – if not because it is in the best interests of employees, then, at least, in the name of improved efficiency.

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Opinion Editorials

Art meets business: Entrepreneurship tips for creative people

(EDITORIAL) Making your creative hobby into a business is an uphill battle, but hey, many other people have done it. This is how they crested that hill.

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creative artist doodle

If the success of platforms like Etsy has proven anything, it’s that creative people can launch successful businesses, even with relatively few tools at their disposal – and for many hobbyists, this is the dream. That doesn’t mean it’s easy, though, and what pushes someone from creator to businessperson can be hard to pin down. In one study, the determining factor was encouragement by family and friends. Others make a slower transition from hobby to side hustle to full-time employment in the arts. Whatever the motivating factors, though, artists interested in becoming entrepreneurs need to hone an additional set of skills.

It’s All In The Plan

From one perspective, artists know how to follow a plan. Whether we’re talking about a knitter who can work through a pattern or a novelist outlining a chapter and building characters, creative thinkers also tend to be very methodical. Just because someone can create or follow a plan, that doesn’t mean they know how to develop a business plan. Luckily, there are plenty of guides to starting a business out there that contain all the basic information you’ll need to get started.

Business development guides are full of valuable technical information – what paperwork you’ll need to file, the cost of licenses, and other similar details – but they can also help you answer questions about your goals. Before you can even start writing a business plan, you’ll need to consider what service or product you want to offer, who your clients will be, and what differentiates your product from others out there. This last question is more important than ever before as more people try to break into creative fields.

Assess Your System

Once you know what your business goals are and what products you’ll be offering, you need to consider whether you have the ability to scale up that operation to fulfill market demand. There aren’t very many art forms that you can pay the bills with fulfilling commissions one at a time. The ability to scale up the artistic process is what made the famous painter Thomas Kinkade so successful during his lifetime when many others have failed. For the modern artist, this might mean asking whether you can mechanize or outsource any of your activities, or if you’ll be doing only exclusive work for high-paying clients.

Find The Right Supports

Every business needs support to thrive, whether in the form of a startup accelerator, a bank loan, a community of fellow professionals, or some other organization or resource. Artists are no different. If you’re going to develop a successful creative business, you need to research and connect with supports for working artists. They may be able to help you access tools or studio space, get loans, market your business, or connect you with a receptive audience. These groups are expert repositories of information and you don’t have to be in a major city to connect with them.

Find Professional Partners

You’re a talented artist. You have a vision and a plan. That doesn’t mean you have to go it alone – or even that you should. To build a successful creative business, you’ll want to partner with people who have different strengths. Not only will these people be able to lend their expertise to your operation, but they’ll make you a better artist and entrepreneur by lending a critical eye to your approach. Just like a major corporation won’t thrive if it’s composed of yes-men who are just along for the ride, your creative undertaking needs internal critics whose ultimate aim is to support you.

Stay Inspired

It’s easy to get bogged down in business logistics and lose your creative spark. In fact, that’s why many artists are reticent to monetize their work, but you shouldn’t let that fear hold you back. Instead, put in the effort to stay inspired. Read books about art and creativity, keep a journal, or go to museums. Experiment with new forms. Be willing to push your own limits and know that it’s okay to fail. Many businesses that aren’t tied to creative output flounder and struggle to find their way, and there’s no reason your business should be any different. Still, the surest path to failure is stagnation and losing your spark. That’s worse for any artist than a sloppy business plan.

Artists are often told that they aren’t meant to be entrepreneurs – but the most successful businesspeople are creative types, even if they aren’t typical artists. Use that outside-the-box thinking to your advantage and make a splash. If you want to do more with your art, you owe it to yourself to try.

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