Helping Esme — Crash Landings and the Power of Social Media
4/13/16
WRITTEN BY: Sarah Lucas
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Beyond Type 1 was founded on the idea that by leveraging the power of social media and technology, we could create a powerful community. A community — historically underserved, under-resourced and undervalued for their dedication, knowledge and expertise when it comes to navigating Type 1 diabetes — could be brought together in a new way not possible before. Juliet, Nick, Sam and I have had this guiding vision that Beyond Type 1 could be a safe place, as Nick says, “for people to crash and be lifted back up — together.”

We first met 2-year-old Esme on Facebook. Late on a Friday night in April 2016, her father Theodore posted about their battle with their insurance company, Humana, to approve coverage for a CGM and an insulin pump for their daughter. As it happens, his daughter Esme, diagnosed just seven weeks before, was in need of tools to help safe guard her life — tools that she was entitled to under her family’s healthcare policy with Humana. Tools her doctor prescribed as “medically necessary.” Humana, however, did not agree and declined to honor the prescription written by Esme’s pediatric endocrinologist.

Working with her doctor, and armed with her insurance policy in one hand and a law degree in another, Esme’s mother, Faye, drafted a second — DENIED — and then a third proposal — DENIED.  With a fourth proposal drafted and awaiting peer review, Theodore took to Facebook at his computer in Texas to share their plight with the simple request for friends and family to (politely) reach our to their case worker at Humana, Joe Kirsch, and ask that he work to ensure Esme’s request was approved. Theodore thoughtfully supplied both the direct phone and email address for Mr. Kirsch. The post was shared over 200 times, people publicly declaring outrage, vowing to call and email and Mr. Kirsch’s day most likely took an unexpected turn.

I woke up that Saturday morning on the west coast to a notification that our Creative Director and Council member Sara had tagged me in the post. I was instantly intrigued by the story of this little bright-eyed girl in Texas, diagnosed just seven weeks ago. Her family, with the help of an outstanding doctor, was already caring for her brilliantly and to the best of their abilities, but the micro doses required to keep Esme in a safe range were not possible without the use of a pump. I sent the family a direct message and a few hours later heard the story first hand from Faye. With a growing social presence and a Facebook community that was fierce and committed to supporting each other, we too posted Esme’s story with the same call to action, adopting Faye’s hashtag #HelpEsme.

On Tuesday the family received news the appeal had been reviewed by an oncologist, that’s an oncologist, and they were again DENIED. The next appeal submitted with the help of advocate Samantha Arcebeaux was set up for review by an independent outside board with a decision expected by Friday. Meanwhile, the family was struggling to keep up with work, daily life, family and now, caring for a child with a chronic condition requiring constant vigilance, on significantly diminished sleep. We continued to stay in touch with the family via text and phone, monitor the situation via social media and encouraged our community to join the conversation. Several members of our community reached out with offers of pumps and CGMs — Esme was in fact already using a loaner pump — but the issue was about access long-term and appropriate responsibility by Humana.

When I woke up Thursday morning to a message from Faye that the decision, initially set for Friday, was likely delayed because a pediatric endocrinologist could not be found to participate in the review board’s process — that was the tipping point.  I was outraged not only for this family — with all they had on their plate with a newly diagnosed child — but for all families who have to fight for not only what is right, but for tools proven to save lives, money and sanity. This family was fighting to keep their daughter safe and then forced to fight for what they were entitled to with a policy they had been paying on for years. Finding a pediatric endocrinologist — that was a problem we could solve with a single phone call. Getting the attention of Humana — that was also something we could accomplish — thanks to social media.

I walked into the office with my heart pounding and a plan that would derail our small but mighty team for the day — but if we were going to go, we were going to go big and fast before the crew at Humana would be able to roll into a weekend by delaying the family further. We tasked our Creative Director Sara, on her tiny island in the Pacific Northwest, with creating visual assets for our campaign. We published an open letter to Bruce Broussard, the CEO of Humana, detailing the story and demanding fair process and treatment. We linked to Esme’s excellent and detailed appeal. We posted across all our social media platforms with a call to action: that our community email, call and tweet directly at the CEO of Humana and continue the same with Mr. Hirsch.

One hour later, it was all in place. And then, the heat: Carly, Mary, Michelle, Thom and I spent the balance of the day reaching out to every influencer in our arsenal, asking them to join on their social media and leverage their networks as well. Within a few hours the Facebook post was past a 300,000 reach and had been shared 2,000 times. Humana remained quiet, only tipping their hand slightly when guests’ posts to their Facebook page were removed. The tweets to Mr. Broussard continued to fly, fueled by our Founder, Council and Ambassadors, all joining together to #HelpEsme. Our team high-fived each other as we left the office that night, knowing that it had been a great day, that we had put all our collective weight not only behind Esme’s family, but also the Type 1 community.

Friday late morning, I was strategizing with our Council member Blythe — strategizing over coffee — when my phone rang. “We won!” said Faye on the other end. “We won,” she said again. Not only full approval, but also a full apology from Humana. Faye had already placed the order for Esme’s new pump in pink — it would be there on Tuesday. In the midst of the bustling patisserie in the heart of Silicon Valley, I burst into tears as I listened to Faye bubbling with hope and confidence. I hung up with a smile as wide as possible, as I tweeted the news, the community instantly began to celebrate and claim the victory.

Beyond Type 1 is “a safe place for for people to crash and be lifted back up — together.” Esme and her family landed here, thanks to Facebook (and Faye even joined Twitter just for the occasion) and the Beyond Type 1 community showed their compassion and strength, lifting us all above and beyond.

Sarah Lucas

Sarah’s daughter Mary was diagnosed with Type 1 in 1998 at the age of seven. An event designer, writer and lifestyle expert with a passion for philanthropy, she has raised over $10 million for Type 1 charities over the past 15 years. In addition to being a co-founder, Sarah will also serve as the CEO of Beyond Type 1. When she's not fighting to make the world a better place, you will find her surrounded by her family, spending time with friends, exploring the world, and frequently on her bicycle.