Connect with us

Opinion Editorials

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.

Published

on

biomarin

biomarin

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.

Continue Reading
Advertisement
8 Comments

8 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.

Leave a Reply

Your email address will not be published. Required fields are marked *

Opinion Editorials

Apprenticeships: How focused training can jumpstart your career

(EDITORIAL) Apprenticeships have been a buzzword recently, but if you haven’t looked into it, we asked the experts to tell us all about them.

Published

on

apprenticeships

When President Trump announced he’d be opening up more federal dollars for apprenticeship programs to improve the economy, business owners’ ears perked up. That interest is now trickling down to employees, especially people considering a new career or a pivot.

I had a meaningful conversation last year with the folks behind Digital Creative Institute (an apprenticeship program that seeks to bridge the gap between higher education and job experience in the digital marketing field) not only to learn about their plans to impact the central Texas market, but how apprenticeships could alter the workforce in years to come. Will the model supplant internships? What of coding schools or hell, even higher education? If you ask Europeans, they’ll probably say yes, while Americans are new to this old term.

To dig into how apprenticeships could speed up a career move, we reached back out to the folks at DCI and asked them to spell it out. Alexis Bonilla from their leadership team penned the following:

Maybe you graduated with a B.A. in theater, started a blog, and found a great love for marketing. It could’ve been that you had a passion for video, but instead of finding yourself creating films, you found yourself telling a brand’s story. Or, by some stretch of the imagination, you went from scientist, to teacher, to social media strategist. All of these are real stories that belong to real people. The two things they have in common:

  1. They all started somewhere completely different from where they would end up.
  2. They all used apprenticeships to transform their careers.

The key is to find that one thing you love to do and run after it full force – because the truth is – you’re probably going to spend over 90,000 hours of your life working at it. Only about 30 percent of adults are actually engaged or excited about their work. You can either spend that huge portion of your life doing something out of “because you have to” or learn how you can invest in a career that will keep you on your toes – constantly learning and actively growing.

Digital platforms are always changing, and lifelong learning is becoming absolutely necessary. If you think about it, most Chief Marketing Officers among companies today didn’t start out by being formally trained in automation software, paid search, Google Analytics, or other digital tools. That’s because much of it didn’t exist when they started their careers. They most likely engaged in a very intentional learning process or self-styled apprenticeship. Their willingness to learn turned them into the best in their field, and the same can happen for you.

We’ve identified a few myths that might be holding you back from standing out among your peers and how you can come out on top!

Myth: You can only find a position in the field you majored in.
Truth: Your major doesn’t determine your career path.

Only 27 percent of college grads actually have a job related to what they studied in college. The fact of the matter is this – a lot of people don’t want to continue their learning once they have their Bachelor’s degree. Typically, if they do, they pursue graduate school, whose students often face challenges that are similar to what undergraduate students experience upon graduation.

This whole idea of “once and done” is over, to the extent that leaders in our government are recognizing it and working on implementing new, innovative ways of learning in the United States.

A few ways you might work on reinventing yourself as you establish or change your career:

  • Start freelancing – We know that working for free doesn’t sound great on paper, but the portfolio you’ll come out with is all the ROI you’ll need. When you have a variety of experience, whether it be a branding project you pick up, a video you edit, or a logo you make for a friend, employers recognize that as experience. Just be sure to pick up projects that are relevant to the direction you’re looking to take your career.
  • Perfect your resume.
  • Turn your work into an awesome portfolio – It’s one thing to do the work and another thing to organize it in a way that is visually appealing to an employer. Around 53 percent of employers say that your resume is not enough. You’re going to need that extra differentiator, so invest in crafting the perfect portfolio to have a place for all of that hard work. We recommend Pathbrite for an easy digital portfolio experience.
  • Connect with a learning community – Whether it be early post-grad or a drastic career change, apprenticeships are a perfect way to engage with a community that pushes you and challenges you. And what if we told you apprenticeships can take the place of graduate school?

So you’ve probably been asking yourself: “What is apprenticeship?”

The historical or traditional definition for an apprentice is a person legally bound to a master craftsman in order to learn a trade.

Think professions such as carpenter, electrician or welder. But those were the old days – apprenticeship is now applied to all professions and modern skills.

Apprenticeship has evolved into more of a partnership: where one person learns a trade or skill by working with someone more experienced. Think of an internship, where you’re at a company to accelerate your learning while you’re still in school, but more advanced, long-term, and with deeper levels of commitment. Instead of being at a school, you’re at a full-time paid position, applying your learning hands-on with the support of a learning coach, mentors, and instructors.

Myth: Between my Bachelor’s degree and staying up to date with online articles, I’m already set to advance my career.
Truth: Coaching and mentoring are two of the best investments you can make for your career after professors are out of the picture.

I’m willing to bet that a lot of you have had a coach of some type in your lifetime. Whether it be a sports coach, a choir instructor, an invested teacher, or even a driven parent, you’ve had someone in your circle of trust that pushed you toward your goals. Well, a career coach isn’t much different.

It’s easy to come up with reasons as to why you don’t need one. “I’m too old for a coach”, “it costs time and money that I don’t have”, “I’ve been through college and got all the help I needed”. You can make all of the excuses you can think of, but it’s pretty hard to argue with the results.

What does the development process look like with a career coach?

You define tangible goals, your coach guides you through practical ways to achieve those goals, and after a defined period of time you evaluate your progress. The retention rate is extremely high. Generally, people are extremely happy with what they gain from having a career coach. Fully 96 percent of people who were coached say they would repeat the process and 86 percent said they at least made their investment back.

What’s holding you back from identifying a coach or mentor and reaching out for support?

Myth: Post-college education isn’t necessary to be successful in my career.
Truth: Rigorous self education, graduate school, and innovative learning like digital apprenticeships are essential.

Continued learning and specialized training are valuable to your career. They are so valuable, in fact, that multiple governments are either investing, or beginning to invest, in new, innovative models.

For example, if you’ve been to the UK, you’ll know that apprenticeships are a big deal. A huge percentage of workers develop their skills through an apprentice-like experience. Since 2004, the U.K. has been actively creating more apprenticeships through supporting employers. The huge success of apprenticeship programs led to the creation of a National Apprenticeship Levy that requires almost all employers to offer apprenticeships.

AAA Apprenticeships has successfully scaled their digital apprenticeships to serve 6,000 apprentices in 22 locations across the country – now it’s time to apply that to the U.S.

Why don’t we have a similar model in the U.S.? It’s harder for businesses to start apprenticeships on their own when it isn’t their core competency – but apprenticeship programs are popping up to fill that gap.

The Obama Administration earmarked $100 million to create more examples of modern apprenticeships. The intention is to fuel more success stories through individual programs around the country; creating positive momentum for a larger movement and scaled strategy.

President Trump recently announced a $200 million plan, nearly doubling what was invested last term, to create more apprenticeships.

This is just the beginning of a major movement to make marketplace aligned learning more accessible. But don’t wait for some new national program to support your learning path, start owning your learning today by outlining a strategy to continuously develop yourself into a highly sought after digital expert.

So don’t wait. This is for anyone that finds themselves in a place to pursue a new job or launch their career. Ask yourself, “What’s next?” Take that step – it’s worth it.

If it’s something you’re interested in, the first digital marketing specific apprenticeship in the U.S. has launched – and right here in Austin, TX. Digital Creative Institute’s next Austin cohort launches in January 2018.

Continue Reading

Opinion Editorials

Is working less the key to productivity?

(EDITORIAL) It’s that time of year where we obsess about our habits and productivity, but maybe we’re overthinking the whole thing…

Published

on

productivity minimalism entrepreneurs freelancer-desk-work

The “work smarter, not harder” mantra has for a long time been, in consensus, about a simple truth: the massive amount of work that we have is kicking your productivity in a few ways, for example:

  • Our never ending work load is further exacerbated from technology that removes the boundary of work and home.
  • The addiction of multi-tasking makes us feel good, but for the most part leads to massive inefficiencies because our brains aren’t designed to do that – they just switch rapidly (and clumsily) between different activities. A little primer is here.
  • We have competing roles and priorities – spouses, caretakers, gig economy participants, careers, business owners, realtors, clients, professionals, friends, dog owners, cat servants – that engage us and that give us more and more to do.

And the never ending work spiral leads to a number of troubles – inferior work, emotional breakdowns, inappropriate Netflix procrastination, sleep deprivation, burnout, relationship troubles, and more. Basically – it sucks for your health.

Having too much to do, sadly, for many of us is a fact of life. There are a few ways to help get around it by working less (aka streamline your efforts):

  • Have a to-do list – they are awesome. Put it in a planner, use outlook or Google Calendar, etc.
  • Use a science driven list like an Eisenhower Matrix! What’s that you say? Glad you asked: an Eisenhower matrix pulls from the wisdom of Dwight Eisenhower and encourages you consider what is Urgent (as in what requires urgency, immediate attention), and what is Important (tasks that contribute to our long term). It’s a simple 2*2 Grid. Basically it helps move away from the idea that we conflate urgent with important, and we are basically always in a highly reactive and “shocked mode.” I like this tool because it’s a great way to prioritize – lean more about it from our buddies at Trello.
  • Engage delegation and love it. Can you pass it on to someone else? Can you use it as an educational or teaching tool? Does it have to be your mess?
  • Eliminate things that don’t bring value – in one of my favorite books “The Subtle Art of Not Giving a F*ck: A Counterintuitive Approach to Living a Good Life,” Mark Manson puts it brilliantly: What problems do you want to have? What things can we get rid of? We do things out of obligation or a feeling of “I must” that doesn’t correspond to reality.
  • Embrace automation. Whether it’s auto-bill pay or automatic deletion or automatic lists, if you can automate it and it gets the quality you want – engage it. If you use social media a lot – can you schedule your posts? Can you automatically reblog content? Or go crazy, get a Roomba.
  • Practice self-care, dude. Eat better. Go workout. Walk in the middle of the day. Get on your workplace wellness plan. Sleep. Repeat healthy behaviors.

In general, the assertion that we do too much is very true.

Most of that comes from the overwhelming sense of “now” that we experience. Take a breath and explore what you can do to either eliminate, delegate, or prioritize effectively so you can spend more time doing what’s important, and maybe eventually, we can marathon TV shows guilt free more often.

Continue Reading

Opinion Editorials

If Reddit goes IPO, will it have to shed its soul?

(EDITORIAL) Reddit is known as a firebrand, a bastion of free speech, but if they go public, will they be able to remain as they are now?

Published

on

reddit

Reddit, the eighth-most popular website on the Internet, is reportedly considering an IPO. As a site valued at over 1.8 billion dollars, this is great news for the company itself – but how much of Reddit will remain if the IPO goes through?

Reddit’s history is steeped in controversy, from minor incidents such as invasion of privacy and a few creepily quirky community members to allegations of child pornography and egregious hate speech. While Reddit’s policy has allowed it to tighten posting restrictions regarding the latter two, the fact remains that Reddit – for all its usefulness – is viewed by many as a ticking time bomb.

An IPO would certainly lend back to Reddit a degree of credibility not seen since its inception, but the problem is that Reddit itself (the haven of free speech and original content that made it so popular in the first place) might not survive the offering. Given the platform’s controversial past, many believe it likely that stakeholders would move to tighten further the restrictions on the platform, ultimately ending a significant era in Reddit’s history.

Admittedly, Reddit has come a long way since its early days of supporting user-created content regardless of persuasion: this past year saw entire subreddits shut down for violating the terms of use regarding hate speech, and the platform certainly has cracked down on illegal and abusive content. Unfortunately, the history might be too much to shake off going forward, which is why we think that Reddit’s branding won’t be a part of the final IPO.

The platform’s developers’ dedication to free speech and truth-seeking is what makes Reddit so fantastic, and that’s not liable to change – it’s the most marketable aspect of the site, after all – but perhaps the rationale behind going public lies in a sense of duty rather than routine. 2017 has seen some of the most reprehensible instances of false reporting and deliberate misguidance in recent history; maybe Reddit’s team feels that they can provide a stable news platform at the cost of some personality.

At any rate, the IPO itself isn’t set in stone, and is unlikely to take place for quite some time. As the situation develops, it will be interesting to see if Reddit embraces its past, or sheds it altogether.

Continue Reading
Advertisement

The
American Genius
News neatly in your inbox

Join thousands of AG fans and SUBSCRIBE to get business and tech news updates, breaking stories, and MORE!

Emerging Stories