Pushed Parents Push Back

How does change happen? Contrary to the popular conception – that change agents are leaders – change agents sometimes are other than leaders. Sometimes they are followers. Sometimes they are ordinary people fed up with what they’ve been fed.

Yesterday the company Mylan, the maker of EpiPen, an emergency treatment for severe allergic reactions, especially but not exclusively in children, announced that it would backtrack. That instead of charging about $600 for a pack of two, it would offer a similar if not identical product that would, however, cost the consumer only about $300 .

By taking the highly unusual, indeed positively weird, step of introducing a generic version of EpiPen, thereby cannibalizing its own brand, Mylan was hoping to shut down the opposition.  Hoping to shut down the anger and furor in response to price increases that included a jump from $249 to $615 in just the last three years.

So how, precisely, did this change happen? How, precisely, were pushed parents able to push back so hard that Heather Bresch, CEO of Mylan, felt forced to retreat? Here’s the sequence:

  • Mellini Kantayya, an actress who lives in Brooklyn, has a husband with an allergic condition. He uses EpiPens, but his health insurance covers the cost. Kantayya was nevertheless struck by a recent piece about ambulance crews that no longer carried EpiPens, because they could no longer afford them. She was further struck by the plight of a friend, the mother of a child with food allergies, whose costs for EpiPens were not covered by insurance. Angered by what she saw as a drug company run amok, Kantayya went online to Petition2Congress.com, which collects signatures and sends them to members of Congress. Her petition went live on July 11 – it was called, “Stop the EpiPen Price Gouging.”
  • Kantayya shared the link with her 836 Facebook friends.
  • Within 45 days, Kantayya’s petition grew from a few dozen signatures to more than 80,000. Additionally, by then more than 121,000 unhappy letters had been sent to Congress.
  • Meantime, a woman named Jennifer Vallez, who has a daughter with a peanut and tree nut allergy, was the second person to sign Kantayya’s petition. (They are friends.) Vallez also went on to share it with her 533 Facebook friends.
  • Robyn O’Brien, is a well-known parent activist and writer with a strong social media following. She began hearing about EpiPens from her 165,000 followers on Facebook and Twitter. On July 21 O’Brien wrote about the price problem in a post that was shared 727 times.
  • One week later, a mother whose 14 year old son had died of a food allergy, posted an article on O’Brien’s website about Mylan’s “EpiPen Profiteering.” Her post was shared 477 times, reaching out to 110,00 people.
  • O’Brien and others continued to press the case against Mylan. On August 17, she joined with another parent activist, of the website Peanut Allergy Mom, to urge all their readers to sign Kantayya’s original petition. Signatures surged another 10,000.
  • Along the way, mainstream media joined the fray, covering the EpiPen opposition with increasing regularity and frequency.
  • On August 18, Bernie Sanders weighs in, on Twitter, against Mylan, of course. His line was retweeted 8,789 times, reaching nearly 2.8 million people.
  • By the last week of August, the story of overpriced EpiPens was in full force. As detailed by the New York Times, by then it had been widely covered and Congress had gotten involved. Senator Amy Klobuchar, for example, has a daughter with allergies who carries an EpiPen. Suddenly, that is, in response to what had by now become a public outcry, Klobuchar was calling for both a Judiciary Committee inquiry on Mylan, and an investigation by the Federal Trade Commission.*

And so it happened that Mylan decided to provide the public with two versions of the same drug – one half the price of the other. And so it happened that change came about not from above but from below. And so it happened that change came about within six weeks nearly entirely because pushed parents pushed back.

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*For more details, see the article on which this blog drew, by Tara Parker-Pope, “How Parents Harnessed the Power of Social Media to Challenge EpiPen Prices,” New York Times, August 25, 2016.

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