Photo Credit: Mashable.com
Blogged while: Catching up on Twitter Moments
Mood: 🐫 Mid-week joy
As summer winds down and back-to-school is approaching quicker than we’d all like, families across the country are preparing for a new year, a fresh Fall start — gathering school supplies, moving into college, and organizing finances for those endeavors. Speaking of gathering finances… what happens when a life-saving, household-name drug is in the spotlight for raising prices over 400% in the last 10 years? #Epigate.
The so-called price-gouging Mylan is being suspected of has erupted this August. It got personal. It got political. It got caregivers TALKING… well, tweeting, posting, creating viral hashtags, petitioning, retweeting, blogging, and cutting off ties with the manufacturer completely.
#Epigate is the online movement and hashtag created by caregivers (mostly parents) that are rallying against Mylan to lower prices of Epipen. Since August 12th, the hashtag has been tweeted over 3,400 times. The most retweeted tweet is a screen shot of a fully-insured single mother who reports paying $900 for the drug.
In many diseases and conditions, patient and caregiver influencers often have more power and credibility than anybody with a verified Twitter “check.” In the allergy space, caregiver Robyn O’Brien has been impressive. She encouraged her 160,000 followers/fans on social media channels to share a screen shot or picture of what they have been paying for Epipen and how many Epipens they have on hand for different outings and situations. She’s been blogging about the price-gauging for weeks, garnering hundreds and thousands of comments from caregivers and patients joining her rally. News reporters, politicians, and physicians alike have been responding and retweeting CAREGIVERS. They are listening, they are agreeing, and they want their voices to ignite change.
A group of allergy parent bloggers who have participated in Mylan events and programs are not staying silent either, despite previous support. Many, if not all, are engaging with the news although some are more passionate than others. Some caregiver bloggers who were self-proclaimed “Mylan spokespeople” are resigning. Add a female-favorite actress Sarah Jessica Parker announcing last week that she was ending her partnership with the company, and there we have a healthcare debacle erupting full-throttle on social media.
Some of the anger caregivers are sharing online is more toward the situation as a whole: They admit it’s life-saving; they’ve blogged about their positive experiences on the drug for years and recognize boycotting Epipen completely would simply not be possible. So what are they to do? By further spreading awareness for the controversy online through retweeting every newest article that comes out, using hashtags #Epipen, #Epigate, #Mylan, they are leveraging the largest public speaking platform in the world. From our experience across all diseases, awareness-raising is something online patient/caregiver advocates do best. It gives them a sense of purpose and assurance that what they are going through matters.
As the New York Times reported in their article “How Parents Harnessed the Power of Social Media to Challenge EpiPen Prices,” what is so fascinating and unique about this controversy and attack against the pharmaceutical company and US healthcare, is that it is highly patient/caregiver-driven, and NOT by the major advocacy organizations — Food Allergy Research & Education, Asthma and Allergy Foundation of America, and Allergy & Asthma Network. Caregivers are the ones creating online petitions, gathering over 500,000 signatures in less than 3 months, sharing the petition to their social media networks, using #Epigate, and trying to change the conversation and have their voices heard. Over just the past week, a Facebook group was made by parents with the goal of ‘throwing around ideas how to make Mylan accountable for the price-gouging.’
#Epigate is a prime example of how powerful a group of mobilized and empowered patient & caregiver advocates can be in driving real change: Mylan announced that they plan on not only boosting its financial assistance, but even further, releasing its first generic at half the price. From what I can tell though, the #Epigate community isn’t closing up shop just yet. It seems as though the announcements this week that many thought would quell the viral social media backlash have not been well-received, even being mistaken for a “publicity stunt.” Powerful online voices often will not and cannot be silenced until they see their concerns being addressed in a way that feels personal and genuine to them. Can Mylan change their minds and regain trust? Is this just the beginning of social media wars versus US healthcare? Time will tell.
Michelle Salvatore [@shellysalv]
Senior Social Media Research Analyst