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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

New USPS duck-shaped truck design has mixed reactions

(OPINION / EDITORIAL) The USPS is getting a fleet of electronic delivery vehicles. We’re wondering if the actual design got lost in the mail.

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New USPS truck in a fictional neighborhood delivering mail.

So the USPS is getting new trucks and they look like ducks and maybe that sucks… or maybe it wucks. Like “works,” if a duck said it. Just give me this one please.

Anyway.

I don’t know how mean I can be here – there has to be something said for objective journalistic integrity – but I have a feeling most people are going to have a rather sarcastic reaction to the new design. I’m not so sure I can blame them – it has a kind of stubby little nose with a shortened hood and a boxy frame and super tall windshield, which gives the wheels a disproportionately large look compared to the rest of the silhouette. It’s sort of like a Nissan Cube but less millennial cool, which A) is discontinued (so maybe not so cool), and B) is not the car that had those giant hiphop hamsters running around, but I’m still going to link to it anyway.

Elon Musk must be breathing a sigh of relief right now.

The contract was awarded to Oshkosh Defense (which I was thrilled to find out is NOT the adorable kid’s clothing company, even though I personally think that would be hilarious if there was a factory making overalls for tiny humans alongside tactical defense trucks) and officially announced on February 23rd, 2021 to the tune of $482 million. Seriously though, someone is going to mix those up for the rest of all time and eternity; I’d never not think about my own baby pictures if some contractor from Oshkosh Defense showed up.

The release mentions that, “The historic investment is part of a soon-to-be-released plan the Postal Service has developed to transform its financial performance and customer service over the next 10 years through significant investments in people, technology and infrastructure as it seeks to become the preferred delivery service provider for the American public.” It’s called the NGDV – Next Generation Delivery Vehicle, which I happen to adore, and will pronounce as Nugduv, and you can’t stop me anyway. The old one was called the Grumman, by the way.

Some credit this as a radical change, and keeping in mind that radical doesn’t necessarily denote positive or negative, it seems like the perfect word to use here. Then there are those who correctly identify “a mixed bag of responses,” sort of like when you get a bag of candy at Halloween that has at least one thing no one likes. Some call it strange, while others defend it as something every new big vehicle should look like (this is where – as one of many – I found it called a “duck” which oh man do I love, quack quack).

We can also hit up the ever fair public opinion of Twitter, because why wouldn’t we?

JavaScript is not available.

This is how I would draw a car. That is not a plus for this design

I really can’t get over that last one. But I mean, whoa. That’s quite the spectrum. There’s less disagreement on pizza toppings I think. But luckily I think we’re safe there – Domino’s makes people drive their personal cars.

Taking a step back and putting snide commentary away for a moment, there’s some areas that should be discussed. First – and what should probably be obvious – there was a laundry list of requirements and restrictions from the USPS, which made Nir Kahn – design director from custom carmaker Plasan – offer up his own tweets that give some insight on dimensions and design:

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I was involved in an early proposal for the USPS truck so I know the requirements well. They pretty much dictated the proportions – this package sketch shows that to meet the ergonomic and size requirements, there wasn’t much freedom 1/2 #USPS pic.twitter.com/Fk35g98Z83

Kahn mentions that “there wasn’t much freedom,” but also that “it could have looked much better,” and this sort of underlines the entire discussion I think – there were goals in place, and possibly some more aesthetically pleasing ways to meet them, but the constraints won out and drove (hehe) the design more than style did.

Certainly, there are other concerns – the ability for USPS drivers to reach a mailbox while seated is paramount. Others have pointed out that this design – with its large windshield and shortened front – should help with safety around small children (all the better if they are wearing Oshkosh B’gosh, because that implies they are tiny and may not be at all concerned with the dangers of streets). The open field-of-vision will aid in making sure drivers can navigate places that might be frequented by any number of pedestrians, so that’s a plus.

Further, if you get struck by one of these, you’ll basically “just” get kneecapped versus taking it square to the torso. The duck article is the one making this call, and I think there’s some merit there (though it makes me question how the USPS fleet is going to do against the SUVs and big trucks out in the wild). It then goes on to point out that this design has more cargo space, fitting into the idea of “rightsizing,” where the form and function of the vehicle meet in a way that is downsized, but still punches above its weight.

“From smaller fire engines to nimbler garbage trucks, making vehicles better scaled to urban tasks can make a huge difference, not only for keeping other cars moving on narrow streets, but also to ensure that humans on those same streets can access the bike lanes, sidewalks, and curb cuts they need to get around.”

I didn’t try too hard to find stats on crashes in mail trucks, but seems like something that should be addressed.

Maybe the biggest point here is that we sort of have to get new trucks – they are outliving their 24 year expectancy and catching on fire. On FIRE. I mean a mail truck might be the worst place for a fire. I’m not even sure I can’t think up a better answer… Ok maybe toilets would be worse.

The new vehicles can be either petrol or electric powered, have 360 cameras, airbags, and automatic braking. Oh, and air conditioning, which the old vehicles did not have. So yes, literally the worst place to have a fire. But due to the taller vehicles, someone can stand in them now! So escape is even easier! Hooray!

A series of delays pushed back the introduction of new vehicles from their 2018 projected date, with poor initial prototypes and the pandemic being major setbacks. Aggressive bidding led to extended deadlines, which had been narrowed down to a small list of candidates that included Workhorse (who unfortunately suffered a large stock plunge following the announcement). It’s been in the works for at least six years.

In the end, I don’t think we can discount all the advantages here – more efficient vehicles that are safer and provide drivers with modern amenities. That’s a LOT of good. I think once the initial goofy shock is over, the design will be accepted. Everyone thought Nintendo’s Wii was a hilarious name (still pretty much is regardless of being in the public book of acceptable nomenclature), and Cybertruck sales are brisk, so I think we can set a lot of this aside. The Edsel these are not.

So hey, new USPS vehicles in 2023, like an exceedingly late birthday present. All I want to see is a bunch of baby ducks following one of them around oh please let that happen. The USPS kind of has an identity crisis in the modern era, so maybe a funny little cute silly boxmobile is just the right way to get some attention.

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Opinion Editorials

Declutter your quarantine workspace (and brain)

(EDITORIAL) Can’t focus? Decluttering your workspace can help you increase productivity, save money, and reduce stress.

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It’s safe to say that we’ve all been spending a lot more time in our homes these last few months. This leads us to fixate on the things we didn’t have time for before – like a loose doorknob, or an un-alphabetized bookshelf, or that we’ve put off ‘declutter’ on our to-do list for too long.

The same goes for our workspaces. Many of us have had to designate a spot at home to use for work purposes. For those of you who still need to remain on-site, you’ve likely been too busy to focus on your surroundings.

Cleaning and organizing your workspace every so often is important, regardless of the state of the world, and with so much out of our control right now, this is one of the few things we can control.

Whether you’re working from a home office or an on-site office, take some time for quarantine decluttering. According to The Washington Post, taking time to declutter can increase your productivity, lower stress, and save money (I don’t know about you, but just reading those 3 things makes me feel better already).

Clutter can cause us to feel overwhelmed and make us feel a bit frazzled. Having an office space filled with piles of paper containing irrelevant memos from five years ago or 50 different types of pens, has got to go – recycle that mess and reduce your stress. The same goes with clearing files from your computer; everything will run faster.

Speaking of running faster, decluttering and creating a cleaner workspace will also help you be more efficient and productive. Build this habit by starting small: try tidying up a bit at the end of every workday, setting yourself up for a ready-to-roll morning.

Cleaning also helps you take stock of stuff that you have so that you don’t end up buying more of it. Create a designated spot for your tools and supplies so that they’re more visible – this way, you’ll always know what you have and what needs to be replenished. This will help you stop buying more of the same product that you already have and save you money.

So, if you’ve been looking to improve your focus and clearing a little bit of that ‘quarantine brain’, start by getting your workspace in order. You’ll be amazed at how good it feels to declutter and be “out with the old”; you may even be inspired to do the same for your whole house. Regardless, doing this consistently will create a positive shift in your life, increasing productivity, reducing stress, and saving you money.

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Opinion Editorials

Online dating is evolving and maybe networking will too

(OPINION EDITORIALS) How has the online dating industry been disrupted during the pandemic? And can we apply a few pointers from this evolved model to networking?

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Woman networking through Zoom video call with two other women.

We are often reminded that hindsight is 20/20 – a proverb that means “it is easy to understand something after it has already happened”, and how ironic that is since we are in the year 2020 and not sure we can fully comprehend all we are learning and what hindsight this will bring.

Reflecting back to six months ago, there were many of us that didn’t have much of a clue about what the rest of 2020 would look like and how we would have to adjust to a more virtual world. We’ve updated our ways of working, connecting with colleagues, socializing with friends, networking with those in our industry, or looking for a new job.

Microsoft suggested that we have seen two years’ worth of digital transformation in about five months. For example: MS Teams, Zoom, and Google Meet have become the new way to host networking sessions, work meetings, and “chats” with colleagues; Tele-med appointments became the norm for routine or non-911 emergency doctor appointments; curbside pickup at grocery stores and food to-go orders via online ordering became the new normal (they existed before but saw tremendous growth in number of users).

We also had to learn how to create engaging and interactive ways to connect solely through a screen. We are already Zoom fatigued and wondering how online meetings have zapped our energy so differently than in person. It turns out, looking at ourselves and trying to talk to a group is a lot for our brains to process.

The Atlantic shares a great article about why the Zoom social life might feel so draining, saying that “Attempting to translate your old social habits to Zoom or FaceTime is like going vegetarian and proceeding to glumly eat a diet of just tofurkey”. No offense to vegetarians, of course.

You could argue though, that we’ve all been interacting via screens for years with the dominance of social media channels – whether it was posting our thoughts in 140 characters on Twitter, or sharing photos and videos of our artisanal sandwiches/cute kid/pet pictures on Facebook. But this seems different. Times are different and we will not be going back soon.

In this interim, many people are trying to make the best of the situation and are figuring out ways to connect. We will always need human connection (and without the germs, even better).

What about our single friends? If they don’t have anyone in the house to already drive them crazy, then where can they go to meet new people and/or possibly love interests?

While many experts are trying to predict the outcomes of this global shift, it may be hard to know what will change permanently. We know many industries are experiencing major disruptions – online dating apps being one of them.

According to Digital Trends, Tinder still ranks as one of the top dating apps. However, now that people are sheltering in place and/or social distancing, there’s a new app taking over as a way to “meet” someone a little faster, while also allowing you to stay behind the screen, sans mask.

Slide is a video dating app that changes your first-date frustrations into real connections and instant chemistry. Explore video profiles, go on first dates via Video Calls at your fingertips, and find that chemistry before dating IRL.”

So, while Tinder, Bumble, and Hinge play quarantine catch-up, Slide is stealing their market share.

How? With video.

Slide recognized the massive success of short-form video platforms like TikTok, and have translated it to dating. They focus on features like:

  • “Vibe Check”, which gives you the option to video chat immediately after matching with someone to see if there’s chemistry. This will save you from long or misinterpreted text conversations and money you may have spent on that first date.
  • A video-first approach that lets you see the real people behind the profiles so you can pass if they aren’t really who they say they are.
  • AI-assisted creation of “future bae” profiles that help suggest your best matches and spare you extra swipes. If Netflix can find similar suggestions…

As of August 2020, the Department of Labor and Statistics estimates about 13.6 million people are currently unemployed and searching for a new j-o-b. Is it possible that some of these newer ways of connecting online could be included in how we network for a new job/career opportunity?

For example, instead of sending a connection or networking request on LinkedIn, what if we could send a quick video about our story, or what we’d love to learn from that person, or how we’d like to connect?

Would that create a faster, better, possibly more genuine connection?

This would seem worth exploring as many job connections are created by in-person networking or reaching real people vs. solely online applications, behind a screen. Some other formats that have seen increased use are Marco Polo for video chats (you don’t have to both be available at the same time) and FaceTime group calls.

It might be worth exploring how short-form video platforms could assist job seekers in networking, outreach, and connecting with others. These are just some ideas as we continue to watch this digital transformation unfold.

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