As a patient advocate, I’ve had over 500 meetings with Members of Congress and created countless videos to highlight the work they do to bring healthcare to all. Yet, many people don’t understand what a patient advocate is, or how they can participate in advocacy with their representatives and government. Here are answers to some of the most common questions I get.
Who are you, Peter Morley?
I started my career in broadcasting research and worked at both NBC and CNBC as a research manager, until I became permanently disabled following a fall off a ladder in 2007. Since then, I’ve become a “professional patient,” and now live with 10 pre-existing conditions, 17 doctors, and 38 different medications (plus a weekly self-administered injection to help keep my lupus at bay). I’ve had 3 failed spinal surgeries, survived cancer twice, and continue to live with chronic illness.
In December 2016, I joined Twitter and created the handle @morethanmySLE with the goal of fostering awareness of men who have lupus. Motivated by assaults on the Affordable Care Act and the daily challenges patients like me encounter in both healthcare and our everyday lives, that year I became a Patient Advocate.
My Twitter account, which currently has over 120,000 followers, gave me visibility that led to his working with his US Congresswoman, Carolyn Maloney to advocate for healthcare that is accessible and affordable to people with lupus and other chronic illnesses.
Since then I’ve worked with government agencies, elected officials, political candidates, advocacy organizations and the media to protect and expand healthcare for all.
My guiding principle is that no one should ever have to worry about having their healthcare taken away from them just because they became ill, and I’ve has put that principle into practice in every part of my advocacy.
I’ve has testified three times before Congress in the House for 1) The Oversight & Reform Committee, 2) The Appropriations Committee Labor-HHS-Education subcommittee, 3) The Energy & Commerce subcommittee on Health.
Over the past four and a half years, I’ve also built a twitter account with over 120,000 followers, which has led to national opportunities to help elevate the healthcare stories of other patients across the nation.
I often say, this is what energizes me and inspires me to travel to Washington, DC. To fight for each of us with lupus and others with chronic illnesses and ensure that we all have the health coverage we need and deserve. Before the Affordable Care Act (ACA) guaranteed health insurance coverage to those with preexisting conditions, many people with lupus could be denied health insurance policies by many providers. That should never happen to anyone.
I hope you’ll join me in the fight to protect our care.
What does “@morethanmysle” mean?
SLE stands for Systemic Lupus Erythematosus (SLE), the most common type of lupus, which affects many parts of the body. While anyone can get lupus, the disease most often affects women. In fact, women make up about nine out of ten adults with the disease. It’s also more common in women of African American, Hispanic, Asian, and Native American descent than in Caucasian women. I’m one of the 10% of men that live with lupus in the United States and although I structures his life around its debilitating symptoms, chronic fatigue, daily medications, and regular biologic treatments, I refuse to let lupus define me. I am “more than my SLE”.
What is Patient Advocacy?
Every patient deserves a voice, and someone to advocate for their health and wellbeing. My advocacy is simple: first, I work on my Twitter platform to help spread awareness of the issues facing patients with disabilities and chronic illnesses.
Second, I collect stories from patients, and distribute them to their elected Representatives. All too often, patients are regarded as numbers or statistics – but we’re people with lives and loved ones, and we deserve to have our voices heard. I’m honored to have been trusted with the healthcare stories of thousands of Americans, and to have been able to not just deliver those stories to their legislators and other elected officials.
What can I do to become a patient advocate?
This is a great question! I always say, anyone can do what I do and make a difference. Advocacy can be as simple as making one phone call each morning to ask legislators or other representatives to prioritize the needs of patients of every kind. Whether this is asking them to defend the ACA, to pass bills increasing or stabilizing subsidies that patients depend on, or even making health insurance companies provide telehealth, your voice matters. I advocate every day, but I can’t do it alone. Each and every one of us has a voice we can use to make a difference. That’s why I will never give up in the fight to expand and protect healthcare.
Can I talk to my elected representatives, too?
Absolutely! My advocacy started when I used twitter to send a direct message to my Congresswoman, Carolyn Maloney. She encouraged me to advocate, and since then I have reached out to hundreds of elected representatives, administration appointees, and advocacy organizations to share healthcare stories with them and ask them to fight to protect our care. You can do it, too! Simply call your representatives and start by saying, “My name is __________. I’m a constituent and healthcare is a huge priority for me. What is _______ doing to help protect my care?” Then let them know your priorities. Congratulations – you’re a patient advocate!
I’m also mstdn.social/@morethanmySLE on Mastodon