It Just Takes One Story
Amy Rios April 16, 2019
How one Lupus patient advocated for his care and gave a voice to thousands more.
In July of 2017, Peter Morley gave himself an unusual birthday gift: a trip to the United States Capitol. As the country awaited the Senate’s vote on the “skinny repeal” of the Affordable Care Act (ACA), Peter made the first of many trips to Washington D.C. to share his story and highlight the importance of the ACA in protecting patients like him with preexisting conditions.
“I think people were really moved by seeing me walking in and out of offices sharing my story,” Peter says of that first trip to the Capitol.
At 5:15 pm on July 27, the last office Peter met with was the late Sen. John McCain’s, where he spoke with the legislative aide and shared what was at stake for him and millions of patients like him without the ACA’s protections around preexisting conditions. Early the next morning, Sen. McCain delivered a dramatic thumbs-down vote that halted the repeal of the ACA.
Peter doesn’t take credit for swaying Sen. McCain’s decision. “I think that Senator McCain was going to vote ‘No’ regardless, and I think he heard a lot of stories that convinced him, as well as his own health. I was very proud of him.” However, seeing how his story could make it to the offices of critical decision-makers awakened the advocate in Peter.
Our phone conversation takes place shortly after Peter’s sixteenth trip to D.C., and while the exhaustion is apparent in his voice, once he begins talking about past and present advocacy efforts, his passion is evident.
Known by nearly 50,000 followers on Twitter as @morethanmySLE, Peter has gained his large, organic following in only a few years by openly sharing the daily struggles faced by someone with a chronic autoimmune disease.
The “SLE” in his Twitter handle refers to Systematic Lupus Erythematosus, which is the most common type of Lupus that affects many parts of the body. Since his diagnosis in 2013, Peter had always paid attention to healthcare reform but decided to be more active when the ACA began facing political opposition from the Republican-controlled Congress. Since then, Peter has avowed not to be defined by his disease and started his Twitter account in December 2016 to provide peer support and illustrate how the ACA protects patients like him.
“I felt really secure with the previous administration, but when it became apparent the Affordable Care Act was in jeopardy, I decided to get involved, and that’s when I started my Twitter account.”
As a self-described private person and “accidental advocate,” Peter was hesitant about sharing his life with strangers. “I don’t know how I resonated with people, other than to be really myself and be honest,” says Peter. “To share pictures of myself before cancer surgery or during an infusion was very difficult, but I saw how it impacted people.”
A cursory glance through Peter’s Twitter profile highlights his dedication to empowering other patients battling chronic diseases, protecting the coverage of preexisting conditions, and frequent appearances made by his 15-year-old silky terrier Natasha, or as she is affectionately referred to as “Smooch Monster,” who illustrates the vital role that loyal caretakers play in the lives of patients.
“I just keep doing what I do, and hopefully the people out there listen,” said Peter. “More importantly, I want to effect real change and not just get retweeted.”
Peter’s message to other patients who want to advocate for their care is both simple and profound: “It just takes one story to make a person listen to the issue. You never know what that story will be.”
After Peter saw how vulnerability resonated with other patients suffering from autoimmune conditions, he began encouraging his followers to do the same. “I carry thousands of stories with me [to D.C.], and I encourage everyone to contact their representatives,” says Peter. “It’s the most powerful thing they can do.”
While Peter has devoted nearly three years to patient advocacy, made 16 trips from New York to D.C., and has met with over 150 offices in Congress, he hopes to convey that it takes far less effort for others to get noticed by legislators and other decision-makers.
“I used to think that thousands of calls had to be made [on an issue] before it would reach a legislator, but I’ve been told that it takes much fewer calls than that before it gets their attention.”
Peter has also learned that people can contact Senate and House members who are appointed to positions of influence, even if they are not a member of their constituency.
“I know this from working with the Senate for almost three years. The senators who sit on the Senate Help Committee, for instance, will take your calls even if you are outside their jurisdiction,” says Peter. “I’ve learned these little things along the way.”
Creating a Community
One of Peter’s most poignant moments as a patient advocate didn’t happen in the halls of Congress or the office of a Senator. It happened when a patient recently diagnosed with Lupus reached out to Peter when they were afraid, not only of their diagnosis but of potential disruptions in their care and coverage.
“The Hospital for Special Surgery has a wonderful resource called ‘Lupus Line,’ and I was able to share that with her…She sent me a direct message thanking me, and we still keep in touch to this day. I’ll never forget that.”
Lupus Line is a free national telephone peer counseling service at the Hospital for Special Surgery that focuses on one-to-one support for people with lupus and their families.
In addition to helping fellow Lupus patients find the resources they need, Peter frequently tweets encouraging messages and calls-to-action to his followers asking them for their stories to share with decision-makers in D.C. before planning a trip.
“I believe it is a privilege and an honor when a follower of mine entrusts me with their story and asks that I relay it to their legislator…Giving people a voice and an opportunity to share their story is what keeps me going and gives me purpose.”
He adds, “When I start talking about it, I feel so gratified and fulfilled. To bring people together is such a beautiful thing.”
To learn more about Peter and his ongoing advocacy efforts on behalf of patients with preexisting conditions, follow him on Twitter or visit his website at https://morethanmysle.com/. It just takes one story, and you can share yours with Peter at https://morethanmysle.com/submit-your-story/