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Paterno family’s new campaign shows how not to crisis manage

With their new campaign to defend Joe Paterno, his family has taken a path that will likely land them in the crisis management hall of fame for what not to do.

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Paterno family’s efforts highlight what not to do

Your company can take lessons from the Paterno family’s wrongheaded and sustained campaign to repair Joe Paterno’s legacy. Over the weekend, Paterno’s family launched a media campaign that will indefinitely be cited in crisis management textbooks of what not to do.

Personally, when I hear the name “Paterno,” I will forever think of the man who chose never to act in any substantive way upon evidence he had a child molester working for him for years – and using his football program as cover. Absolutely nothing his family pays people to tell me will change my opinion of him and his actions even slightly.

Paterno family claims border on the absurd

Get this: among the rebuttals made by the family’s law firm to the report Penn State commissioned on where it went wrong and how to fix their system was a claim that investigators only considered emails they read and failed to consider what emails that no longer exist might have said.

One of the defenses I have regularly heard of Paterno has been that he cared about his players’ and co-workers education and careers far beyond only football. But among all of those Paterno supposedly cared so much about, the family now says Paterno “knew little of Sandusky’s personal life.” See how I key in on elements of the family’s actions that support my perspective?

No one will be moved by the family’s report or publicity campaign. Not one person. People who worship at the altar of Penn State football and never placed any blame on Paterno will feel mildly more justified in their position unless they actually read the nauseating 238-page report.

Now, consider your own business in crisis

Imagine that you or one of your employees really messes up or that you are under attack by adversaries of your company. There is a time it is advisable and proper to fight back aggressively to protect your company.

And then there is a time to just be quiet. In that time, you can only do yourself more harm by invigorating your adversaries and keeping the story alive.

Do you think you would be able to separate your emotion from the proper stance you need to take in such a moment?[/span10][/row]

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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14 Comments

14 Comments

  1. Arthur_game

    February 11, 2013 at 11:01 am

    UGH! Someone else who hasn’t read any of the reports. By “substantive”, I hope you mean not only reporting once to your superior, but also meeting subsequently with your superior and the head of UPark PD, even though he was not the witness. By “substantive”, I hope you mean following up with Mike McQueary, weeks later, to ask him if he was satisfied with how the incident was handled. By “substantive”, I hope you mean that McQueary told Paterno that he was “satisfied” with how it was handled. By “substantive”, I hope you mean telling McQueary that he should go to the police.
    By “nauseating”, I hope you mean a career FBI prosecutor and child victim investigator who gives the most insightful and useful report regarding PSOs. By “nauseating” I hope you mean paying for that report out of your own pocket and publishing to the public at large to truly learn from this terrible tragedy.
    By “keeping quiet”, I hope you mean quiet for more than a year, while a highly speculative, unsubstantiated, defamatory and unread report has been captioned and regurgitated ad infinitum by the likes of you, without uttering a single word (Sue Paterno).
    By misquoting, I hope you mean that Paterno and Sandusky were not friends, which has been corroborated by nearly every source close to the Paternos and Sandusky. By “caring”, I hope you mean that Paterno informed Sandusky that he would not be the next head coach early in ’98 because Second Mile was taking too much time away from Sandusky’s heralded coaching career.
    By “rebuttal”, I hope you mean that only a small and limited number of emails were uncovered by the Freeh Report. Those were the emails that Schultz personally maintained. Had you actually read any of the reports, you would realize that many of the emails lacked reference, subject lines, and the previous email string, which really matters if you are a serious inquirer. Freeh failed to impress upon the lack of available information, and instead chose to make many unsubstantiaed conclusions.
    By “rebuttal”, I hope you mean that Paterno and his attorney actually volunteered to be interviewed and open up dialogue with Freeh, but it was refused and neglected. This is a fact that Freeh lied about yesterday in his extremely pre-mature press release. If you are Luis Freeh, and you know that Mr. Paterno is dying of lung cancer, you send an investigator to Paterno immediately, put in writing that you are willing to accomodate, and you try your hardest to make the record complete. Freeh did not do that.

    • David Holmes

      February 11, 2013 at 11:25 am

      @Arthur_game:disqus

      Freeh interviewed 463 people and his report among other reports convinced me. The point here, however, is that what the Paterno family is doing is poorly thought out when considering their likely goals. Go check the twitter feed on the subject; out of hundreds of tweets in the last few minutes, I might have seen a couple favorable to the family.

      Take a look what they just made you do above based on how you feel regarding the situation. How does the family help themselves by riling up people on two sides of the issue – none of whom are going to change their perspective based on the report?

      • Arthur_game

        February 11, 2013 at 12:28 pm

        Thank you for responding so quickly. Point by point:
        1) Did you ever wonder why Freeh never incorporated those 400-some people interviewed, and yet only found 1 individual who held a grudge against Paterno? Do you think an independant investigator would have included those other 435 people’s comments about how Paterno was extremely stubborn when it came to doing the right thing regardless of publicity?

        2) The “likely” goal is completely spelled out in Mrs. Paterno’s letter to the letterman.

        3) I have checked the twitter feed. Did you note that Phil Knight has has been re-convinced of Paterno’s legacy? Twitter has nothing to do with setting the record straight and defending yourself.

        4) I don’t feel anything about the situation, other than that the media (including bloggers) continuously neglect to not only investigate and ask but also to just read the facts. I don’t know what responsibility Paterno had. The Freeh Report is not dispositive and neither are the four reports from Messrs. Sollers, Thornburgh, Clementi, and Berlin. I can tell you from reading all of the Freeh Report, and Sollers’ and most of Clementi’s that Clementi’s Report is by far the largest contribution to educating the public about child victimization. For that the Paterno family should be thanked.

        5) You are assuming that the family is trying to help themselves. Obviously there is a benefit, if the reports are taken as exculpatory towards Paterno. But in reality, the Berlin and Clementi reports do far more than just help the Paterno name.

        6) Again, I cite Phil Knight, who has changed his perspective. Also, there are public officials in PA who are changing their perception, despite the twitter backlash. ESPN was by far the worst dissemenator of mistruths following the Freeh Report, and now they are even giving the anti-Freeh story legs.

        It would be one thing if Freeh simply concluded, which he reasonably could have, that Paterno “could have done more”. But it is entirely another thing for Freeh to stand at a podium and say, Paterno “repeatedly concealed…child abuse”, “failed to take any steps”, and “[allowed Sandusky] to continue with impunity”…for “14 years”. You can’t sit back and keep quiet when you are going against a liar with money and no due process.

        The real focus on “crisis management” should be directed towards the Penn State Board of Trustees, who completely mismanaged everything, soup to nuts in this entire tragedy.

      • Science Guy

        February 11, 2013 at 12:58 pm

        “How does the family help themselves by riling up people on two sides of the issue – none of whom are going to change their perspective based on the report?” So crisis management 101 according to you says Paterno’s family should sit by and do nothing while the press and various uninformed bloggers use their blunt tools on Penn State? You sir are an idiot – maybe a professional idiot – but an idiot nonetheless. Good luck with your businesss model.

        • David Holmes

          February 11, 2013 at 1:36 pm

          I always find the bluster of anonymity to be cute. You’ll have a hard time finding an expert in crisis management who would advise the Paterno family to have taken the course they have taken over the last few days. There are far more effective actions between “nothing” and this that could have helped repair their image.

          • Keith Berman

            February 12, 2013 at 1:33 pm

            It seems silly that you are using the above as an example of how not to manage a crisis; as tjm101 mentioned “managing a crisis assumes that you are in a crisis”.

            I imagine that one of the first things that an “expert in crisis management” would learn in their expertise is the ability to accurately determine if a situation is even a crisis or not….

          • David Holmes

            February 12, 2013 at 2:48 pm

            @google-142d2e30a6bd2a20612887c2a33379e0:disqus Within the technical study of crisis management, I might agree with you slightly. The Paterno family has initiated and is going through what would be defined as a para-crisis which in all effective measures “is” a crisis in this situation. Pick up even the most basic crisis management texts and you’ll understand why the distinction here is immaterial.

          • Keith Berman

            February 13, 2013 at 3:52 am

            First off, I question how “technical” the study of crisis management is.

            Your posts did prompt me to google “paracrisis”. Apparently, a paracrisis is threat/situation that has the potential to evolve into a crisis.

            So you are correct in that I would understand why the distinction here is immaterial; it is immaterial because this situation is not a paracrisis either. For it to be a paracrisis would imply that the things for the Paterno family and Joe Paterno’s legacy are at risk of greatly deteriorating. The actual crisis played out a year ago and Paterno’s has been in shambles ever since; things really cannot get worse for the Paterno family then they already are.

            The result of the recent report will either a) greatly restore Paterno’s legacy, b) somewhat improve Paterno’s legacy, or the worst-case scenario c) not turn around his shattered legacy at all. The worst-case scenario is not a crisis, a paracrisis, or whatever else you want to call it. You could call it a bad investment or a waste of time, but that is not the same thing as a “crisis”.

  2. tjm101

    February 11, 2013 at 12:52 pm

    Congratulations. You’ve guaranteed that you will not receive any of my business or referrals. Do yourself a favor and read Clemente’s portion of the new report, and open your mind. If you want a primer on poor crisis management, go visit what the PSU administration did in November 2011. Managing a crisis assumes that you are in a crisis. Where we are now is over a year removed from the crisis, and seeing a legitimate effort by some legitimate resources releasing a narrative that makes sense, rather than the man that Bill Clinton calls the biggest mistake of his presidency basing condemnation of 61 years on a single email taken out of context. And let’s remember, Louis Freeh presided over Waco, Ruby Ridge, TWA 800, Khobar Towers, Richard Jewell. There’s a sterling reputation Mr. Holmes. But hey, that’s your boy.

    • David Holmes

      February 11, 2013 at 1:33 pm

      @tjm101:disqus I don’t really have an opinion on Freeh or his career in one way or another. Read the majority of commentary today and you’ll see that the Paterno family created a new crisis, or at least a para-crisis. Either way, the PR campaign is foolish. There are better things they could have done with the report they paid for.

  3. ProudAlumna

    February 11, 2013 at 1:24 pm

    David…as a former communications executive with crisis management experience *and* a Penn State alumna, suffice to say that your comments and conclusions are completely off-base, and I question whether you read the entire report and whether you cross-referenced the Freeh report against the Paterno report (you know, part of due diligence and fact-gathering). This is not about emotions but facts — things that can be supported by information, data, or similar. The only emotions emerge when individuals such as yourself claim to be “all-knowing,” having either facts or insights that can stand up against individuals who *have* reviewed all the facts and can state that the conclusions drawn from the Freeh report are anything but the end of the story.

    Joe Paterno did care about his players and *all* students and did put their education first, but no where did it state nor infer that he cared about (nor protected) his co-workers as you claim he did. Furthermore, if you took the time to read the Freeh report and search for the facts that have been clearly substantiated, you could only conclude that assumptions and inaccuracies constitute the bulk of this tome. It’s far easier for you to go for blind acceptance vs. an objective evaluation.

    To state that this man put his players and program above the safety of children is ridiculous, but it’s far easier to go with the sensational approach vs. the reality-based one. Did you read that Joe stated that he couldn’t care less about publicity, stating that he did not “lose two minutes of sleep about bad publicity” regarding a situation with a player many years prior? Do you know that he did report the information (per university procedures) as he was told it and was *not* told the sordid details meaning that his understanding of events was minus facts? Did you read that Sandusky “fooled qualified child welfare professionals and law enforcement” whose jobs are to ferret out child predators? There are so many *facts* that do not support Freeh’s conclusions that Joe Paterno turned a blind eye or harbored someone harming children; even the CEO of Nike acknowledges such after reading the Paterno report so will you accuse him of being emotional or not understanding crisis management strategies and issues or lacking the ability to be objective?

    You may think you’re “keying in” on key facts and are using a keen eye to differentiate the facts (what you claim constitute the basis for the Freeh report) from whatever you believe the Paterno family is trying to accomplish, but alas you are doing anything but. You can think whatever you wish when you hear the name Paterno but please don’t offer your crisis management counsel to Penn State or our global community. We’ve already been dealing with counsel that has failed the test for far too long.

    • David Holmes

      February 11, 2013 at 1:49 pm

      Thanks for your thoughts, @8524170e54d1630aacaaf390bac8ecb1:disqus I can see that you care a great deal about the institution and/or Paterno. My point in the article was not to convince anyone that Paterno was or was not negligent in his actions; I have my opinion on that and it is not likely to change.

      My point was that the Paterno family could not have picked a less effective way to try to repair their reputation. They could have even used the report in more effective ways. The only thing they have accomplished with their media blitz, however, is to invigorate their adversaries and inflict carpel tunnel upon their friends.

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Public Relations

If a terrorist group adopts your brand’s name, what do you do?

(Public Relations) Isis mobile payments are having quite a time of their name as a terrorist group adopts the same name for their brand. Let’s discuss the conundrum.

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Reputation management and your brand

Is your company having a reputation management problem; a little social media crisis? Whatever is going on, it’s unlikely you have it as bad as the Betamax of mobile payments has it lately.

Isis, as I had known it before a few weeks ago, is a mobile payment application that utilizes the NFC chip in many smartphones to make retail purchases once you tie your account to credit cards you already have. Probably the only reason I had ever heard of Isis is that Austin, Texas was one of the early places it rolled out and presumably because Verizon (my carrier) owns part of Isis, Verizon preloaded the app on my phone and for a long time blocked its users’ ability to use competing Google Wallet. Although Verizon always denied it was “blocking” Google Wallet.

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On vacation with my family last week, however, and out to dinner with friends, all around me had to endure my geeky ponderings on how the company with that purple decal on the window of the restaurant next to the credit card decals must be feeling about the violent militant group currently occupying parts of Iraq and Syria – also named ISIS, or the Islamic State of Iraq and Syria. Well, today we found out how they’re feeling when Isis announced they’ll be changing their name; not to be confused with the news last week that ISIS in Iraq was also changing its name.

Some have reasoned that because relatively few Americans are paying attention to the crisis in Iraq and because of the obscurity of the mobile payment system at this point, changing the name and all of the costs associated with rebranding might be overkill. However, for a company still trying to grow and gain brand awareness, the uncertainty of the duration and severity of the crisis in Iraq and Syria does pose a real problem.

A cause for pause

Media outlets are still almost universally using the name ISIS to describe the militant group despite their own rebranding efforts, and the mobile payment company has to be asking itself what the value of the name Isis was anyway. It certainly doesn’t describe the service in any way, and it is likely they initially chose the name because it wasn’t associated with much of anything other than an Egyptian Goddess who was basically the Mother Teresa of Egyptian Goddesses. But now they cannot as easily define the word “Isis” in consumer’s minds while competing with a violent movement in the news.

It is unlikely that your company’s name will be adopted by a terrorist group, of course. But the whole scenario might cause you to pause and consider the value and identity of your own brand. What would have to happen for you to decide you had to completely rebrand? And if you are considering the creation of a new product or brand, it is worth taking the time to imagine the most likely potential threats to that brand and what your reaction would be to those threats.

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Opinion Editorials

BioMarin CEO calls terminal cancer patient a “spoiled petulant brat”

BioMarin pharmaceutical continues to astonish, not by their move to refuse a dying cancer patient life-saving treatment, despite the FDA’s direct approval to do so, but by their CEO writing aggressive emails laced with insults and condescension. Not advisable to any company, whether in a moment of crisis or not.

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Jean-Jacques Bienaimé, Chief Executive Officer, BioMarin Pharmaceutical

Great occasions do not make heroes or cowards; they simply unveil them to the eyes. Silently and imperceptibly, as we wake or sleep, we grow strong or we grow weak, and at last some crisis shows us what we have become. – Brooke Foss Westcott, British Theologian, 1825-1901

BioMarin Pharmaceutical continues on the war path

Two weeks ago, I forewarned that BioMarin Pharmaceutical was headed toward a crisis and last week we discussed the accidental “reply-all” email the CEO sent out revealing the company’s crisis strategy.  I could never have predicted this week’s developments.

I have witnessed and studied crises of one sort or another over the last two decades and I have difficulty recalling too many examples of companies handling issues they face as poorly as BioMarin has.

Oh, we had Kenneth Cole tweet a few months ago that the uprisings in Egypt were caused by his Spring collection; and Abercrombie & Fitch has endured several years of criticism after their CEO said that the company only markets to good looking people.  But even in tasteless fashion empires, we do not frequently see CEOs go on email rampages in response to public outcry about their company’s behavior.

Supporters of Andrea Sloan have forwarded emails I will share below, and in conversation with Andrea, she discussed with me her feeling of having been mislead by the company’s Chief Medical Officer, who is no longer a licensed doctor.

To catch you up if you have not read previous articles on the situation, Andrea Sloan is an ovarian cancer patient.  Her doctors at MD Anderson say that due to her treatment history, traditional, available therapies will no longer be tolerable by her body.  BioMarin pharmaceutical has had a drug in trials that the FDA has indicated it will permit Andrea to use if the company will give it to her.  BioMarin has promoted this particular drug, BMN673, to investors as the safest and most effective drug of its type.  But to Andrea and her doctors, the company says they just don’t know if it is safe enough.  Over the last few years, the FDA has allowed over 3,000 patients to use drugs that are not yet approved as, basically, a last resort; while denying only a handful of such requests.

What Not To Do if You Are a CEO

Supporters of Andrea Sloan have used social media and letter writing campaigns to appeal to the company in hope they will allow her and others who face her circumstances a last hope.  The letters that I have seen range from heartfelt appeals for moral and ethical behavior, to logic and business reasons it would make sense for the company to grant Andrea compassionate use of their drug.

For a couple weeks, most of the emailed letters Andrea’s supporters sent to the company went unanswered.  Over the last few days, though, that changed; and in a somewhat dramatic manner.

BioMarin’s CEO, Jean-Jacques Bienaime, suddenly started replying to the emailed letters. Far from the measured, careful responses one would expect to come from the CEO of a company, Bienaime resorted to insulting language and at times, unable to come up with his own words describing his perspective, forwarded someone else’s email calling Andrea Sloan “petulant” and “spoiled” as his response.

In Bienaime’s “reply-all” email discussed last week, he laid out two strategies for fighting Andrea:  1. Contradict her doctor’s conclusion that BMN673 is the only drug that has a potential of helping, and 2. Hire a PR firm.  Bienaime made good on the aim to contradict Andrea’s doctors in a national media appearance, but BioMarin is apparently still in need of a PR firm; and one which specializes in crisis management at that.

The email exchanges:

What follows is an email exchange; the first from a supporter of Andrea to Bienaime, the second, his reply to that email:

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Beyond it being difficult to understand why his reply is about insurance coverage, which has nothing to do with the situation at hand, his tone is entirely inappropriate.  Does BioMarin’s Board of Directors support their CEO’s statements?  How do his investors feel?  If the company had any type of crisis management plan in place, Bienaime’s responses would not have fit within it.

To another supporter of Andrea, instead of writing his own reply, Bienaime simply forwarded someone else’s words as his response.  The email is far too long to paste here in its entirety, but toward its conclusion, it reads:

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On social media, supporters of Andrea were livid and a number of them wrote the CEO in complaint of his having endorsed that perspective of Andrea.  Here is an excerpt of Bienaime’s reply relevant to those complaints:

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No matter what kind of email the CEO of a company gets, this kind of response is never the correct reaction. How does the CEO of a public company think these replies will help his company in any way? And surely he understands that by writing no words of his own in response and simply forwarding someone else’s words instead; those words become his own.

Also of concern: licensing

Given that BioMarin’s primary strategy to deny Andrea the drug is to disagree with her doctors at MD Anderson regarding the availability of other options, it came to a surprise to Andrea Sloan that the Chief Medical Officer of the company let his license lapse a few days short of five years ago.  According to The Medical Board of California and referencing the date on the image below, if Dr. Fuchs does not renew his license by the end of this month the license will be canceled entirely.

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While it is not illegal for Dr. Fuchs to serve BioMarin as its Chief Medical Officer without an active medical license, there has been controversy in other places where problems have occurred in entities which had a non-licensed doctor as its CMO.  In this situation, Andrea Sloan feels mislead because she was told that she needed to sign a waiver so that her doctor at MD Anderson could talk to their Dr. and Chief Medical Officer.

Because of communications Dr. Fuchs has had regarding Andrea Sloan’s medical condition and the company’s insistence – amounting to medical advice – that she has other options, at least one Texas Legislator has agreed to file a complaint to the Medical Board of California for there to be an investigation into whether or not Dr. Fuchs actions amount to practicing medicine without a license.

How Does This End?

BioMarin, some argue, is justified in deciding to wait until later in the drug’s trial process before dispensing it outside of trials for any reason.  But even setting aside bioethical and moral issues surrounding the ability of a dying patient to have every treatment available that has shown promising results, how can the company justify promoting the safety and efficacy of the drug to investors if they will not stand behind those claims with critically ill patients?

Crisis management can get somewhat complicated at times, but for the most part, common sense dictates the bulk of it.  BioMarin, and its CEO in particular, has gone off the rails in their response to the tens of thousands of people who have called on them to provide compassionate use to Andrea Sloan.  At this point, the source of the damage that is occurring to the reputation of the company is happening not because of the actions of those contacting the company, but because of the actions of the person who is supposed to be capably guiding the company.

In a situation like this, if I were advising the company as a Crisis Management consultant, I would go directly to the other board members running the company and suggest they sideline the CEO for the duration of the crisis and set forth in a new direction that is less damaging to their mission as a company.

Note: as of publication, the BioMarin PR department has not responded to a request for comment regarding the validity of these emails.

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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.

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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:

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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.

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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:

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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

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