On Thursday, amid mounting pressure from the public and politicians alike, the drug company that makes EpiPens finally promised to do something about their often astronomical price.
With 118,000 signatures asking Congress to “stop the EpiPen price gouging” and everyone fromHillary Clinton to Sarah Jessica Parker weighing in, drug maker Mylan has said it will reduce the cost for some users.
SEE ALSO: Why are EpiPens so expensive, and why is everyone so mad about it?
The company is creating a savings card for the EpiPen 2-Pak that will cover up to $300 of the $609 cost (which is up from less than $100 in 2007).
It’s a small gesture that doesn’t address the price of the drug itself, which is often paid by the insurer and reflected in premiums. It also won’t help many users, including anyone without insurance, or anyone in government-funded or federal health care programs.
However, it’s a step in the right direction and a symbolic victory for a grassroots campaign that has harnessed the power of social media to force the issue.
How we got here
IMAGE: APAP PHOTO/JON ELSWICK
The price of an EpiPen has grown gradually but surely over the last few years.
The device, which administers a single dose of the hormone epinephrine to treat potentially life threatening anaphylactic shocks, uses a patented dosage system. It means the user gets exactly the right amount of epinephrine and the patent has prevented any other drug companies from bringing similar products to market.
That lack of competition — along with aggressive marketing and awareness campaigns over the years — has ensured that Mylan has a large and committed user base.
As the price has increased, by between 10 percent and 15 percent most years, the cost has often been absorbed by insurance companies. However, changes in deductible and copay levels have recently passed more of that onto the consumer. A new school year has also meant more parents looking to get EpiPens for their children with allergies.
The result: a lot more people having the sky high cost of the product brought home to them with a bang. And they took to social media to express their anger and frustration.
A brewing social media storm
What began small — parents sharing tales of woe, unhappy customers comparing ludicrous prices — started to snowball and eventually attracted the attention of social media users with bigger profiles.
Robyn O’Brien, a prominent parent activist with some 38,000 followers on Facebook, started documenting some of the stories: a parent that wept at the pharmacy counter; a single mom that claimed she faced a $925 bill; another that paid $1600 for two packs.
The stories she read in comments and re-posted struck a chord, as did photos of the bills people were facing, prompting further stories and photos. People began to realize they were far from alone and their anger was shared.
“There was so much heartache in the stories.”
“There was so much heartache in the stories,” O’Brien toldMashable. “Parents are confronted with unfathomable choices: paying rent or buying the EpiPen; mortgage payment or EpiPen; back-to-school supplies for all of their children or EpiPen. And if they have more than one person in the family with allergies, it is crippling.”
There was a hashtag as more and more anecdotes surfaced. Of course there was. And of course it was #epigate.
The stories she read in comments and re-posted struck a chord, as did photos of the bills people were facing, prompting further stories and photos. People began to realize they were far from alone and their anger was shared.
“There was so much heartache in the stories.”
“There was so much heartache in the stories,” O’Brien toldMashable. “Parents are confronted with unfathomable choices: paying rent or buying the EpiPen; mortgage payment or EpiPen; back-to-school supplies for all of their children or EpiPen. And if they have more than one person in the family with allergies, it is crippling.”
There was a hashtag as more and more anecdotes surfaced. Of course there was. And of course it was #epigate.
Before long politicians were taking notice. Sen. Amy Klobuchar from Minnesota, who has a daughter with allergies who carries an EpiPen, was one of several demanding answers.
She asked the Federal Trade Commission (FTC) to investigate whether Mylan has violated antitrust laws with their price increases and drew attention to the issue on Facebook.
In a post to her followers that’s had 13,000 reactions, she said: “One drug company shouldn’t control the price of a life-saving product prescribed 3.6 million times last year. This should be immediately investigated and stopped.”
Among the 1,600 comments on the post were hundreds more stories of real people struggling to afford the cost of the drug.
IMAGE: FACEBOOK
Klobuchar also told Mashable that social media played a vital role in raising awareness of the issue. “One of the first places I heard about the EpiPen price increase was on Twitter, from concerned constituents,” she said. “And then the first place I went to call for action was Facebook, where my post was shared more than 5,000 times.”
“Thousands of people have reached out on Facebook and Twitter to share their stories about the impact of prescription drug price increases. And all of that made a difference. In less than a week, Mylan announced it would expand its EpiPen patient assistance programs. We need to keep up the pressure — both online and on the Hill — to help protect American consumers from the rising prices of prescription drugs.”
Where were the advocacy groups?
While the clamor for intervention grew, most of the patient advocacy groups were silent.
As the New York Times pointed out, some of them, including Food Allergy Research & Education (FARE) and the Allergy & Asthma Network, have partnerships with Mylan for patient awareness campaigns. They are believed to receive money from the drug manufacturer although the figures are not known.
This uprising, then, was squarely fought by the parents and relatives of EpiPen users on the battlefield of social media.
By Wednesday, the momentum was unstoppable.
Hillary Clinton publicly waded in, saying the company’s “outrageous” behavior was “just the latest troubling example of a company taking advantage of its consumers.”
Sarah Jessica Parker, meanwhile, ended her relationship with Mylan Thursday. “I hope they will seriously consider the outpourings of voices of those millions of people who are dependent on the device, and take swift action to lower the cost,” she wrote on Instagram.
Of course this wouldn’t be a pharma outrage story without Martin Shkreli, who famously hiked the price of toxoplasmosis treatment Daraprim wildly in 2015, wading in.
He initially said that “these guys are really vultures,” asking, “what drives this company’s moral compass?” He later defended Mylan, though, telling reporters that “the fault lies in the insurance companies.”
“The second $MYL has a decent ‘hit’ for a product we all go nuts,” he complained on Twitter, referring to Mylan by its stock market acronym. “Can’t someone succeed and not be shamed anymore.” He also jokily offered to testify in the case, saying he had “a lot of insight and some potential solutions for these issues.”
Shkreli told Mashable over email his “vulture” comment had been taken out of context but declined to elaborate.
The power of the social web didn’t stop there. Many people weren’t waiting around for Mylan to drop the price to an acceptable level and started sharing ways around paying the price.
A hugely popular Imgur post, for example, detailed how one person has been buying the product from New Zealand — shipping free — for $121.69.
IMAGE: IMGUR
On eBay, meanwhile, EpiPens flooded the site.
The postings weren’t exactly altruistic, but they were often cheaper than the market price.
The next target for some collective social media ire and action could be insulin, the price of which reportedly rocketed from $231 per patient in 2002 to $736 in 2013.
O’Brien said something similar could force a change there “if there is a hashtag that immediately conveys the issue with no explanation needed.”
“We have heard from those discussing insulin and cancer drugs who share these same concerns,” she added. “Health care costs are crippling our economy.”
[Source:-Mashable]
