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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:

email1


email2

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:

email3

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:

email

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.

medical

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.

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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16 Comments

16 Comments

  1. Deanna L. Kuykendall

    September 24, 2013 at 5:04 pm

    David, you hit the nail on the head! BioMarin has botched Andrea Sloan’s request for compassionate use from the get-go. It’s been like watching the movie Dumb & Dumber. How can a global pharmaceutical firm get it so wrong? Saying yes to Andrea Sloan’s request should have been an easy decision. I agree with you, the Board of Directors needs to sideline the CEO and CMO and let a crisis management expert get this derailed PR disaster back on track. And before that, tell Andrea Sloan it is going to give her access to the drug her doctors believe is her last hope.

  2. Terry Lynne Stulik

    September 24, 2013 at 5:35 pm

    BIOMARIN – YOUR CEO NEEDS TO GO! Investors and Board will agree!
    BioMarin CEO calls terminal cancer patient a “spoiled petulant brat” https://agbeat.com/business-marketing/public-relations/biomarin-ceo-email-meltdown/ … via @agbeat- GET RID OF BIENAIME, BIOMARIN!

  3. Dorothy Ayer

    September 24, 2013 at 10:22 pm

    Biomarin wouldn’t need a PR firm if they’d can their spoiled petulant CEO. And THEN put the investors big bucks behind them and help this young woman.

  4. justme

    September 24, 2013 at 11:13 pm

    I wish someone would interview Andrea’s doctor at MD Anderson again. How did this drug, tested on 28 women, results unpublished/unknown, become her ‘last hope’ for treatment, according to him? Seriously, can her doctor please explain this?

    • David Holmes

      September 25, 2013 at 12:53 pm

      The results have been published; you can easily find them in a Google search. And, the CEO and CFO and been going around telling everyone what the results have been. If you would like audio of them saying precisely and scientifically what the results were, I will be happy to send that to you.

  5. Dorothy Ayer

    September 25, 2013 at 11:27 am

    Food and Drugs Administration a lot of times just rubber stamp test results. Biomarin’s constant red herring and inappropriate comments and responses is bringing FULL attention from the FDA. I hope the FDA searches them with a magnifying glass; and I mean ALL OF THEIR DRUGS THEY HAVE IN DEVELOPMENT. In fact, I would encourage people to start copying their letters they send to Biomarin and forward them to the FDA, requesting a CLOSER look to all of their in-testing drug trials and manufacturing.

  6. MarkBMorrow

    September 26, 2013 at 8:10 pm

    I guess Mr. Bienaime would sound like a spoiled petulant brat if he was pleading for the chance to save himself from certain death.

  7. JoshGrot

    September 27, 2013 at 11:22 am

    What’s so particularly sad and frustrating about situations like this is that the public can’t just protest with their wallets and avoid using the company’s products to send a meaningful message back to the company that would change its behavior.

    It seems that big pharma companies with de facto monopolies on potentially life saving medications can do just about anything they want as long as they get the drug to market (and it proves to be effective in saving lives).

  8. Shelly Curran

    September 30, 2013 at 11:29 am

    Problem number one is that he’s French. Problem number two is that he has writers remorse and then lies about it. How is this man a CEO of anything? The woman is dying so who cares if the drug is experimental. She wants a chance. It’s not like her family is going to sue him if she dies, duh!!

  9. David Holmes

    October 1, 2013 at 6:53 pm

    I don’t completely understand this process, but they don’t pay for the trials – other entities do. So it may be as simple as that a breast cancer focused entity stepped up first.

  10. Ellis Meret

    October 3, 2013 at 2:01 pm

    When your CEO starts rattling off replies with insulting, rude, ignorant, and condescending language, that’s THE sign your company needs a PR firm. lol. And all those leeches do anyway is distract the public so companies can rub their hands together in the usual way.
    Money and power turns people into corrupt scumbags. So does this corporate culture in general it would seem.

  11. jan l

    October 4, 2013 at 9:21 am

    took the words right out of my mouth! this man has cancer of the heart that has metastasized to his conscience.

  12. Miles Howard

    October 9, 2013 at 1:25 pm

    Wow. I wonder what would Jonas Salk say?

  13. paperdetective

    October 26, 2013 at 7:17 am

    I have communicated by email with Biomarin in the last few weeks to try get information on their PARP inhibitor drug for my type of patients.It was terrible. They took their sweet time to respond and first had some kind of $10 an hour ignorant brat answer with canned useless responses and, when I pushed back, they took even more time to respond and it was just a ‘don’t bother us’ brush off again.

    Never had that before with any other company, researcher or doctor. Those all responded with informative helpful replies, which I could pass on to fellow patients to help. With some I’m still in touch regularly.

    From the trail of BioMarin’s email headers, I can see they have outsourced their communications. Not to their advantage though. It should not be outsourced, since someone who understand the highly technical subject matter and is committed to his company and understands cancer patients and researchers, should answer. Instead we get bureaucratic answers as if we were talking to government insteda of a business with a profit motive.

    It makes one wonder if their product is really that promising. If a vendor does not love the customers which he is going to sell his product to, which is how BioMaribn sounds, then why are they in this business at all?

  14. Pam Clark

    October 31, 2013 at 7:57 pm

    With BioMarin involved (as it should be) with its clinical trials, I suspect that their patient sampling might not be appropriate, and with all of the publicity their data will be highly scrutinized. However, as long as they have control over the initial population sample being tested, they can still present inaccurate data to the FDA. Sloan presents what would be an unknown (but perhaps in this case – a known condition with lots of documentation and tests). I think BioMarin’s CEO is freaking out because their product will not pass muster in the real world.

    Their Q1 earnings for 2013 (documented conference call:)
    Naglazyme, Q1 2013 sales of $69.4 million
    Kuvan, sales of $37.6 million

  15. Pingback: Dead On Arrival: Federal "Compassionate Use" Leaves Little Hope for Dying Patients - Right to Try - National Movement

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Opinion Editorials

How to increase website engagement

(EDITORIAL) A website is vital to any business, but customer engagement guarantees success. Check out these powerful tips to boost engagement.

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Having a website for your business isn’t enough. If you want to grow your company, you need to maximize this digital asset by increasing user engagement. The question is, where do you begin?

What does healthy website engagement look like?

Launching a website is one of the quintessential first steps in building a business. It’s a new company’s way of saying, “We’ve arrived! See, we’re legit!” But the problem is that very few entrepreneurs and business owners know anything about building websites. So they use a drag-and-drop web builder to throw a few elements together and develop a site in a few hours.

Simply having a website isn’t enough. If it’s only a placeholder for your brand, you’re missing out on an opportunity to reach people and move them from awareness to purchase. You don’t need a website – you need an engaging website.

What is user engagement?

“Put most simply, user engagement is when visitors to your site appreciate your content enough to stick around, absorb, and convert,” web design and UX optimizer Rob Wells writes. “Most importantly, when user engagement is high, you’ll find that your audience becomes more loyal. You’ll notice more return visits and higher conversions, because your website simply works.”

Signs of high user engagement include reading and absorbing content, organic comments on blog posts, social media shares, watching videos, above average time on site, high click-through rates, and low bounce rates. We’ll tell you more about how to achieve these “wins’ in the following section.

5 Tips for Boosting Engagement

Every website developer, marketing guru, and entrepreneur has their own formula for boosting engagement, but there are a few tactics that everyone can agree on. If you want to see immediate results, start by doing the following:

    1. Make it About Your Target AudienceToo many businesses make the mistake of shaping their marketing messages around themselves. They mistakenly assume that customers care about them, when the truth of the matter is that customers only care about themselves.

      If you want to boost engagement on your website, start by transforming your messaging. Make it about your audience. Make the customer the hero of their own story. You’re just there to guide them along and point to solutions (products and services) that may help them get from where they are now to where they want to be.

    2. Tell StoriesCut out the sterile corporate lingo and breathe a little life into your copy. Mission statements are lame. Tell stories!

      The Ward & Barnes, P.A. website is a perfect example of how storytelling can cause engagement to soar. They actually include client stories, testimonials, and quotes on their homepage. This helps visitors connect with the brand and immediately establish a feeling of trust and goodwill.

    3. Eliminate Distractions“According to research by Google, people judge websites as beautiful or not within 1/50th to 1/20th of a second,” Website Magazine notes. “Perhaps even more interesting is the fact that visually complex websites are consistently rated as less beautiful than simpler sites.”

      Stop with the complex websites and sophisticated designs. You’re not a web design company – there’s no need for all of these bells and whistles! Eliminate distractions and simplify every page to one specific focal point. Anything more means you’re actually competing against yourself.

    4. Empower Your CTAsEvery page on your website should have a call-to-action (CTA). And when creating these CTAs, always ask yourself one simple question: “Why would anyone click this?”

      If you’re asking for an email address or sale without providing clear and direct value in return, you’re missing the point. You have to compel people to follow through.

      One of the best ways to empower your CTAs is to offer something in return – like a free eBook, a discount code, or a product sample. When there’s an enticing reward, people will be much more likely to follow through.

    5. Go VisualThe brain processes visuals much faster than text. Use this to your advantage by integrating visual content into your website. This means video, graphics, and original images. Skip the stock photos! However, don’t overdo it. Remember to keep it simple and avoid unnecessary distractions. Quality over quantity works every time.

Turn Your Website Into a Lead Generating Asset

Transform your website from a branded placeholder into a powerful, lead generating asset that procures leads, and converts them from curious visitors into profitable lifelong customers. This process can take time, but you have to begin somewhere. Start by leveraging the tips in this article and analyzing the data. Based on the numbers, you can optimize, iterate, and improve over time.

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Opinion Editorials

Idea: Color-coded face masks as the new social contract to combat COVID-19

(BUSINESS NEWS) Americans must come together on a new social contract if we have any hope of permanently reopening the economy and saving lives.

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A church in Texas used a stoplight color-coded wristlet system to help churchgoers navigate the new social awkwardness of closeness. Those with green bands are comfortable with contact including high fives, yellow bands indicate someone who wants to talk but not touch, and red is for someone interested in keeping their distance altogether.

In pre-pandemic America, basic social cues were sufficient to communicate these feelings, and most violations of them were annoying but not harmful. We now live in a world where daily banalities like grocery shopping and shaking hands with a new acquaintance are now potentially dangerous – for you and those you care about.

So what is the way forward?

Humans are social beings, and much of our survival is reliant on our relationships to, and interactions with, other humans. A way forward is critical. But our brains are trained to find and read faces in an instant to assess emotion and whether that emotion indicates a presence of a threat.

Not only has this pandemic challenged our innate notions of community and safety, the scientifically healthy way forward is to cover most of our faces, which is staggeringly counter to our understanding of a threat. It is now impossible to tell whether a sunglassed-masked stranger walking into a restaurant is a robber or just a person who was walking in the sun.

But because we are humans with large brains, we are able to adapt. We are inherently compassionate and able to emotionally understand fear in others and ourselves. We are able to understand both science and social grace. In this case, the science is straightforward but the social grace is not.

Governor Abbott of Texas announced the second closure of bars and reduction of capacity in restaurants last Friday in response to the dramatic increase in coronavirus cases statewide. During the press conference he said: “Every Texan has a responsibility to themselves and their loved ones to wear a mask, wash their hands, stay six feet apart from others in public, and stay home if they can.”

It is this shared responsibility that we must first embrace before any meaningful reopening can proceed.

We must accept that for the indefinite future, we have a new normal. We have to adapt to these new social codes in order to protect ourselves and our neighbors. Color-coded bracelets, masks, hats, choose your accessory – this could be a way forward.

First, we must agree these measures are necessary. And we shouldn’t take them because a politician told us to or told us not to – many people feel that our government has failed to provide us with coherent guidance and leadership considering a broad social contract.

We should adapt them because if you are not free, I am not free. We can do this together.

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Opinion Editorials

What to do when you can’t find your passion and you’re feeling lost

(EDITORIAL) Global Pandemic or not, people struggle to search for job opportunities, their career, and find their purpose. Knowing yourself is the most important part.

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Feeling lost? Can you relate to this Reddit post in the Career Guidance forum?

Careers that aren’t boring?

I’m really lost right now. I just graduated high school and I really don’t know what I want to do with my life.

At the moment my only idea is to join the military (United States) and see how it goes. I really want to go to college on the side but I don’t know what I want to get into. I tried coding in high school and it didn’t make sense, making me feel like i won’t be successful in the technology field. Medical field costs too much+ time in school. Only other career field that’s on my mind is engineering but I don’t know if I’ll be successful?

Is it okay to feel like I’ll fail? Will college actually teach you unlike in high school? I feel like high school didn’t really prep me and I’ll be behind”

And then you have to love this response:

Is the grass really not greener on the other side?

I’ve been a trucker since I left school 10 years ago. Every post I come across are full of people dreading the office culture, politics, environment etc. and saying how they’d love to be outdoors.

I work outdoors and it’s shit, -5°C in winter and 40+°C in summer. Slogging 12-15 hour days behind the wheel, micro-sleeping and hallucinating just to make delivery times. Getting filthy and soaking wet when working outside.

The idea of being in a nice cooled office, not having to put my life on the line and actually working on a project with a team sounds so stimulating to me instead of being a monkey behind a wheel. But then I see so many people call themselves monkeys in other professions and hate the office.”

It’s alluring how the ego is meant to ensure our security and survival, and unless we learn how to work with it and the messages we tell ourselves, we can often feel alone, isolated and the only one with these feelings. It is when you start exploring others’ stories that you may feel an a-ha moment, or things may seem like they click.

One would venture to argue that many people are sometimes lost in a fog, and not sure what to do. Above was an example of a high schooler who is feeling like the military might be his only option, but if you read through the thread, it does appear that he has other ideas but just doesn’t know enough about them or doesn’t trust himself enough to look further in to them. And if the military is the right option for him, that is okay too.

“The ego is the human consciousness part of you. It was designed to ensure your security and survival. Unfortunately for many of us it has never relinquished its initial purpose. Instead, for many the ego became the master script writer and because of it, everything becomes a drama based on past happenings.” Beverly Blanchard

If you’re feeling in a fog, people may ask you:

  1. What are you passionate about?
  2. What do you love doing that you can make money from?
  3. What company do you want to work for?
  4. Where do you want to live?
  5. Are you living for your resume, or for your obituary?

If there’s a screaming feeling inside that literally feels like you are going to BURST with all caps of “I DON’T KNOW”, then let’s take a breath and see what we can do to work with that. Here are some ideas that may be great activities for you to help move forward.

Kindly note, the first thing is to allow yourself TIME. You need some time to figure it out, do some research, look in to options, have conversations, possibly work experiences, maybe some inner soul searching and spiritual work. If you think you have to have this figured out right away, you may have already put a limit on yourself (sorry to be a buzzkill but you might need YEARS to figure out your purpose). You ideally need to figure out how to get from A to B, not A to Z right now.

  • Do some research on Design Thinking.
    Spend some time with a journal getting out some of your thoughts so you can move them from the emotional part of your brain to a more logical and rational place (usually once you’ve put something on paper or even said it out loud). You may like this Design Your Life workbook based on a Career Exploration class at Stanford where you explore your interests, and how they can align with work and your purpose. The workbook is great because it gives you writing prompts that help guide you (they also give ideas on how long to spend on an activity so it could be 10 minutes or 30 and you can decide if that is something you can do at that point in time). They also just released a book, Designing Your Work Life. How to Thrive and Change and Find Happiness at Work.
  • Make a simple list.
    Spend 5-10 minutes just writing out things you really like or love (no explanation, just the name of the item). There is no judgement to this list and nothing is too silly (Iced coffee, video games, tennis, music, dogs, photography, favorite subject(s) in school, friends, family, reading…) Walk away. Come back to it. Do any of these things give you clues on what type(s) of professions fascinate you? Then make a list of what you need to do from here (more school, internship, volunteering, pro-bono projects, part-time or full-time job). Stop and ask yourself how you can get more of these things in your day to day.
  • Consider yourself an Investigative Reporter, and talk to people about how they chose their areas of study and/or careers.
    The hope is that you are pleasantly surprised to hear many people have had this feeling and they moved forward anyway. They made decisions with the information they had, and their career and projects grew from there. This could help you recognize what is that next step you need to take.
    I would tell that high schooler to go meet with military recruiting offices and see what they have to say. I’d also suggest they reach out to mechanical engineers and learn about what they work on and what they had to do to get there. If they are unsure of how to find any, check out LinkedIn to start. Many people look at those that they consider to be successful and see where they ended up – often we miss the part of the story about what they had to do to get there. This is what we should be looking to uncover, and that may give us insights on what our next steps can be.
    In job searching, a great tool is conducting Informational Interviews and speaking with people that are in jobs that you think may interest you and they can tell you more real details. Whatever you find to be really intriguing and makes you want to know more about, that could be a good sign of a career/job you’re interested in. Ask them about education and skills requirements and take notes.
  • Consider your life like a flight of stairs.
    Each step is leading to the next one. You don’t have to know or see the entire staircase, and you may not even know what’s on the second floor.
  • Write your Eulogy.
    This sounds really morbid and maybe slightly is, but a plane doesn’t just take off on a flight plan without knowing where it’s going and landing. If you write out your eulogy, you may discover what you want to be remembered for, and start living a life that includes those types of efforts, endeavors, and projects. This also may take a little bit of pressure off of you that everything in your life will not be solely based on your job or career. Then, maybe hide it so your family doesn’t think you’ve lost your mind.

Whatever you do, please know you are not alone and the more you think everyone else has it all figured out, the better acting you are witnessing. Yes, there are people that have known what they wanted to do since they were little but even their job/career has had it’s twists and turns.

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