Stanford’s Medicine X is a catalyst for new ideas about the future of medicine and health care. This new series, called The Engaged Patient, provides a forum for some of the patients who have participated in or are affiliated with the program. The latest installment comes from Medicine X ePatient Joe Riffe.
We're all familiar with social media. We spend our days updating our Facebook statuses, tweeting our latest attempt at being funny, or using Instagram to show off our last meal. Social media is an excellent way to connect with friends and family; some people have even gained celebrity status all through the social-media movement. Social media has sparked revolutions as well. The Occupy Wall Street Movement, for example, was largely driven by the power of a hashtag.
This power is also accessible to patients to start a David versus Goliath type war. I use the power of social media to help amputees get prosthetics, and in this piece I'll tell you two of these stories. The first is about Allie; the second is a recent story about my own battle to get a prosthetic.
I met Allie in the hospital after a mutual friend asked me to meet her and her family to show them that being an amputee doesn’t mean you can't live the life you want to live. I immediately connected with Allie. I wanted to be her mentor; she the Luke to my Obi Wan. Allie didn't have insurance at that time, and I couldn’t stand the thought of this young girl, just starting her life, not having access to the best prosthetics available. I explained to her that with the right prosthetic, anything is possible.
A local prosthetic company had gotten to Allie before the prosthetist I use was able to meet with her and her family. They convinced the family that due to Allie’s lack of insurance she would have to settle for the best prosthetic she could afford - and not the best available like she deserved. Allie suffered on this prosthetic for months. The ill-fitting socket and knee didn't suit the lifestyle of an active 20-year old.
After nearly a year of suffering, Allie found herself with insurance and made her way to the prosthetist I use. He quickly saw the need for her to have access to the best technology available and had his team start creating a prosthetic for her.
There are many hoops to jump through when trying to get a prosthetic leg. The biggest obstacle is that advanced technology comes with a hefty price tag. Luckily, the office she goes to now knows how to get through these hoops fairly quickly.
Allie made it though this process fairly quickly and received a letter from her insurance company promising to pay for the advanced prosthetic. Then, they began the stall tactic. They waited months, delaying the payment required to order the prosthetic that Allie so desperately needed.
That was when I came in. With one tweet - just one tweet - I was able to expedite the payment for her prosthetic limb. Why does this company prevent amputees from returning to their lives by approving high-quality prosthetics then not paying for them, I wrote to my hundreds of followers. A few days later I was greeted on Facebook by the photo above: Allie with her new leg.
Her new limb allows her to go swimming, drive a jet ski or ATV, run, walk backwards and sideways, and so much more. This limb has changed Allie’s life. With this prosthesis she's now only limited by her drive to succeed. This was the goal. Social media changed her life.
My story is a little different. I had to fight to get the advanced prosthetic I needed to return to work as a paramedic. The prosthetic I needed was labeled as experimental, which made it difficult to get insurance coverage. Instead of denying coverage, my insurance company employed a stall tactic, asking me for the same information repeatedly. This tactic can make some amputees settle for an inferior product.
Once again, I used the power of social media to enact change. I sent one email and posted one tweet. I explained that this stall tactic is unacceptable for any other form of treatment, and it's not acceptable to treat an amputee this way either. I'm now waiting for final payment on my new prosthetic.
These are two examples of social media changing the world for a single person. Social media has great reach - it has toppled governments and highlighted the monetary gap between the rich and poor, among other things - and for the handful of amputees that I've been able to help, it has made life a little easier by giving them the freedom of mobility they so deserve.
Joe Riffe is an above-knee amputee, a paramedic, an amputee rights advocate, and 3-time Stanford Medicine X ePatient. He's currently working on obtaining insurance fairness for all amputees by ensuring that patients are given the prosthesis they are prescribed. Joe lives outside of Louisville, Kentucky with his wife, Kate, a former U.S. Army Combat Medic, and their three sons. He can be found online at http://www.prostheticmedic.com and @ProstheticMedic.
Image courtesy of Joe Riffe