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Patient Spotlight

Peter Morley:

It Just Takes One Story

April 16, 2019
8 min read
Patient
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.
Empowering Himself
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.”
Empowering Others
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.”

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