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
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.

Leave a Reply

Your email address will not be published.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

Opinion Editorials

How to encourage your childrens’ entrepreneurship

(EDITORIAL) To encourage entrepreneurship for our children, we focus on providing them with direct evidence that they can do and be anything they want (excepting the six year old, who currently wants to be a cat).

Published

on

children and entrepreneurship

When I walk in the door most days, the routine’s predictable. Drop my briefcase, check the mail, and by this point I’ve received an invitation to go to my daughters’ store. What’s for sale invariably changes from day-to-day — sometimes it’s a pet store, or a bespoke clothier, or a coffee shop — but I’m always amazed at the level of thinking about multiple aspects of business ownership that they put into their play.

For example, I’m typically offered coupons and combination deals on whatever my purchases might be, which means that we get to have rich conversations about the purpose of such incentives and how they affect both customer perception of their brand and their profit margin.

Now, as they’re both under ten years old, many of these conversations don’t cause their games to stop for an introductory economics lesson, but I want them to keep these discussions in mind as their play expands. The world in which they’re growing up is a very different place from that which their parents did, and the possibilities they can embrace literally did not exist a generation ago.

So, too, the challenges that they’ll face. While the number of career fields and the jobs within them that are fully accessible to women are growing exponentially, the globalization of the economy and the shift towards a gig workforce means that they’ll have to compete against not only the remnants of outdated gender expectations, but also considerably larger numbers of people to do so, and with less stability in their career paths once they arrive.

To encourage the entrepreneurial spirit within our girls we, like many parents, focus on providing them with direct evidence that they can do and be anything they want (excepting the six year old, who currently wants to be a cat).

It’s been well said that what one can see, one can be. A 2012 MIT report found that in Indian villages where women held positions of responsibility and authority in local government, levels of aspiration and access to education rose by 25 percent and 4 percent, respectively. The amount of hours they had to devote to completing domestic chores dropped by nearly 25 percent.

It’s important to us to have our daughters see successful women in all walks of life to let them know that they are limited only in their passions and imagination, and should never settle for anything that they don’t want.

It’s also important for us to show them examples of young entrepreneurship whenever possible as well. In a 2015 analysis of Federal Reserve Bank data, the Wall Street Journal found that the percentage of adults under the age of 30 who had ownership stakes in private companies had fallen 70 per cent over the past 24 years. This illustrates the myth of the swashbuckling 20-something entrepreneur, along with the underlying challenges to business ownership.

By being realists about the challenges as well as idealistic about the possibilities, we want to keep alive the spirit that makes them excited to open a combination fish store and haberdashery in their playroom today, with the anticipation of changing the world through their professional passions tomorrow.

Continue Reading

Opinion Editorials

20 bullsh*t buzzwords that should be banned from tech forever

(OPINION) As the language of tech ebbs and flows, there are linguistic potholes so over-used, so annoying, they make you want to scream. Here’s 20 of the worst offenders.

Published

on

buzzwords

There’s specific lingo in any industry. Buzzwords, if you will. Get a group of friends who work together for beers after clocking out, and chances are you’ll get lost quickly once they start trading war stories – outsiders beware.

But, there’s one community who puts even nurses (marry a nurse, and you’ll learn what prophylaxis means) to shame with insider speak and bullshit buzzwords: the tech community.

Tech folks are like business and marketing people but mutated. There’s so much free-flowing jargon that goes unchecked and evolves a la Origin of The Species within days. The words and phrases become gospel and, before you know it, people are sharing these nonsense phrases that become the industry norm, leaving anyone on the outside scratching their heads, trying to decipher the tech code.

But, as the language of tech ebbs and flows, there are linguistic potholes so over-used, so annoying, they make you want to scream. There are words used so out of context that make you want to turn them into a snarky meme and pass it around the office because you’re a jerk like that. (Well, I’m at least a jerk like that.)

These are some of those words.

The words that need to die a horrible, 24 hour, “what does it all mean” death.

Words that should be locked away in a prison so vile Charles Manson would be like, “Nah, bro. I’m good.”

Please don’t use these words in your marketing, pitch meetings, or just ever. They suck.Click To Tweet

Strap in and lock it down, here we go:

1. Sync
Can’t we just say “everyone knows what’s going on” instead of sync? This is one of those metaphors alluding to tech as melded with the products and culture, serving as interchangeable. We’re people, not iPhones to be plugged into our laptops. We don’t need to sync. We can meet up.

2. Robust
Robust is coffee, a strong tea you imported from India. It’s not a tech software experience. A can of Folgers can claim to be robust, your project tool cannot share this claim.

3. Pain point
Are we still using this one? A pain point is an elbow that’s got an owie, not what a customer thinks sucks.

4. Delight
I’m delighted to eat an excellent meal or get an unexpected call from an old friend. I’m delighted to leave work early to have drinks. I’m not delighted to use enterprise software. Sure, it makes my day easier. Does it offer a view of heaven when I can use self-service? I think not.

5. Disrupt
One of the godzillas of Jargon Mountain. I get that this worked in context a few years ago. But, now? You’re not “the Uber of…” and you’re not “disrupting” anything.

You built a parking app, Pat. You didn’t change the world.

If you dethrone Facebook, you’ve disrupted the world. ‘Til then, keep your pants on. Your algorithm for the best pizza place in town ain’t changing the block, let alone the face of communication.

6. Game changer & Change agent
Does anyone buy into this one? Was the game changed? This goes in the bin with “Disrupt.”

7. Bleeding Edge
Some jerk in some office decided “the cutting edge” wasn’t enough. It wasn’t hyper progressive enough, so they labeled their work the “bleeding edge”.

If this phrase were any more douchey, it would have a neck beard and a fedora and argue the tenants of socialism on IRC with strangers while sipping Mountain Dew.

8. Dog food
Who came up with this? When did a beta test get labeled as “dog food” I’m still lost on how this one became the industry standard. “We’re eating our own dog food.” This doesn’t even make a lick of sense, people. Just say we’re testing something. It’s a lot easier.

9. Alignment
What happened to just saying you agree? I thought alignment was for tires, not for working. I’ll give you parallel, but alignment? Not buying it.

10. Pivot
Pivot is just a fancy, non-finger point-y way of saying change. And typically, that change is reacting to something not going the company’s way. “Pivoting” means reacting to bad news or undesired outcome and making everyone involved feel smarter about the process.

11. Revolutionary
Unless you’ve built software that cures cancer, does something better than Elon Musk, or gets you laid faster than Tinder, you’re not revolutionary. You’re an element of evolution in a steadily progressing world.

12. Internet of Things
I still don’t even know what the hell this means. Really. It’s one of those phrases people use and pretend to know but really don’t.

13. Bandwidth
I thought bandwidth was Internet stuff, not how busy you are at work. Can’t we say, “if you’re not too busy,” instead of, “if you have the bandwidth,”..?? These are people, not routers.

14. Low-hanging fruit
You mean the easy work? “Easy win” even applies here. But the whole gardening metaphor is tired. It’s ok to say, “Do the easy work first” in a meeting. Hiding behind a metaphorical phrase doesn’t make the work any less important.

15. Deliverables
Do we need to break everything down into words to make the process more complicated? Aren’t deliverables, just work? It’s an adjective to describe what work you’re completing… so… it’s just work. Throw in a “key, ” and you’re jargon-y as all get out.

16. Circle Back
Translation: I don’t want to continue talking about this right now, so I’m going to schedule more pointless meetings to discuss this thing I don’t understand and don’t want to talk about in a few days. Likely, scheduled on your lunch break.

17. Action item
What happened to the good ole’ “to do List”? Instead, we’ve got “action item”. You come out of a meeting with a sore ass. The boss pounds on your for the stuff you need to do. You’re up to your ears in homework, yet, it’s not work you need to do – it’s “action items, to be delivered upon.” WHAT THE HELL DOES THIS EVEN MEAN?

18. Take it offline
If there was ever painful corporate-speak, this one is a granddaddy. Instead of burning minutes in a meeting, someone will announce, “let’s take it offline.” Always happens. What about, “let’s talk about this face to face,” or “I’ll swing by your desk”, or “let’s figure this out.”

We appreciate you not annoying the rest of us with your A+B problem, but we’re not all living in the matrix. Or, at least we think we’re not.

19. Buy-in
Committing to something – a culture, an idea, a feeling. We’re equating life to a poker game and expecting everyone to get the idea, too. So lame.

20. Rockstar – Ninja – Wizard – whatever descriptive verb
This one. Holy horse crap. Can we PLEASE STOP with trying to slap a descriptive label on good work? I get it. You want to exclaim your person is a badass, and they’ve got chops. But this labeling of people in fantastical ways just sucks. When did the craft of a ninja, or the fantastical abilities of a wizard relate to code? And the rockstar thing?

Dudes, you’re not Keith Richards, you wear a startup hoodie and complain when you’re not getting free lunch at work.

Also, these names suck because they imply some male-dominance-cum-brogrammer mentality. They’re shadowy ciphers that are such machismo, it’ll barf up a steak. When a woman gets labeled a “ninja” it’s in an entirely different context, and that’s not cool. Writers have to get creative and use terms like “acrobat” or “juggler” to give off a sentiment of equal playing field, and it’s obnoxious. Just stop with these lame titles.

And there you have it. 20 bullshit buzzwords that should be banned forever and ever. Comment away, and add the jargon you loathe in the comments section. If it goes well, maybe they’ll ask me to write a part two, and we’ll make even more people mad.

Continue Reading

Opinion Editorials

How to crush your next remote job interview

(OPINION EDITORIAL) Working remotely is becoming more and more popular. Learn how to excel during a remote job interview.

Published

on

how to dress for interviews interview

As the career landscape continues to change, so does the way in which we interview. With an increase in remote workers, there is also an increase in video interviews.

What immediately comes to mind for me was three years ago when I had a video interview with the fabulous COO of The American Genius. Since the company is based out of Austin, and I’m in Chicago, we had a video chat to see if I’d be a good fit for the company.

While it took some of the pressure off being able to be in my own home for the interview, there was definitely the con of…being in my own home for the interview. Fear of any noise or interruption posed as a slight distraction.

Like an in person interview, there are some pressures that go along with a video interview. The main one being that you need to sell yourself as an extremely responsible individual who can handle the freedoms and rigors of remote work.

Employers are looking for accountability in their remote workers. You must be able to execute your tasks in with a heightened amount of self-discipline.

This can be done through use of time trackers and proactive reporting. Keeping track of each task you do, and the time spent doing it, will provide something tangible for your employer. Be sure to explain during the interview that this is something you will provide to the employer.

Next, because there is a change in environment, and arguably a change in responsibility level, the questions asked during the interview may be different from your standard interview.

A few questions that may pop up to keep in mind: what hours will you be working? What is your remote experience like? Is this something you’re seeking for supplemental work, or trying to do full-time? What is your home workspace like? What tools do you use to keep yourself on task? What is your preferred method of payment?

In turn, there are some questions you should be prepared to ask, as in any other interview. For example: What would a typical day look like if we were working together in-house? Do you offer advancement opportunities? How many of your team members work remotely and how do we all stay in contact?

Working remotely can be a whole different beast in terms of proving yourself to your employer. Having yourself fully prepared for an interview can help start you off on the right foot.

Continue Reading
Advertisement

Our Great Partners

The
American Genius
news neatly in your inbox

Subscribe to our mailing list and get interesting stuff and updates to your email inbox.

Emerging Stories