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Lupus Patient Becomes Lupus Advocate

Adapted from a talk to the SLE Workshop at Hospital for Special Surgery

Peter Morley
Lupus Patient and Healthcare Advocate

Introduction

Peter Morley was diagnosed with lupus in April 2013. (Read Morley's HSS Back in the Game story.) Like many individuals who are presented with a disease that affects several aspects of their lives, Morley began to look for ways to make a difference for himself and for others who faced similar challenges.

Photo of Peter Morley.In December 2016, Morley joined Twitter and created the handle @morethanmySLE with the goal of fostering awareness of men who have lupus. His Twitter account, which currently has close to 20,000 followers, gave him visibility that led to his working with US Congresswoman Carolyn Maloney to advocate for healthcare that is accessible and affordable to people with lupus and other chronic illnesses. Morley’s related passions include being active in the Charla de Lupus (Lupus Chat)® program’s initiative to identify and address the specific needs of men with lupus, which is part of the Community Service Plan at HSS.

Since May 2017, Morley has increased his voice and scope of advocacy. He states that no one should ever have to worry about having their healthcare taken away from them simply because they became ill. “This is what energizes and inspires me to travel to Washington, DC,” Morley said. “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.

At the time of this posting, the following information pertaining to the ACA is current and correct. However, since proposed changes to the law are pending in Congress and may be amended in ways that could substantially change the law, please contact the US Department of Health and Human Services at 1.877.696.6775 or visit hhs.gov to find information relating to changes to the ACA.

Using Social Media as a Platform

The US Presidential election of November 2016 brought with it many changes to healthcare resources and affordability. While Morley believes that healthcare is a bipartisan issue, one of his biggest fears of the election was that the American public elected somebody who could overturn a law that protected people with preexisting conditions such as lupus. As November turned into December, he started to see discussions about repealing the Affordable Care Act come more into focus. Although he was empowering himself with his doctors and his medications, and he was working hard to “get to a good place”, Morley still felt helpless in regard to the future of accessible healthcare.

Motivated by the new president’s use of social media platforms, Morley decided to create his own online presence as a man diagnosed with lupus. His goal was to connect with individuals in similar situations who were seeking peer support and to prove that a person’s illness doesn’t solely define him or her. Morley uses Twitter, an online news and social networking service that enables individuals to communicate through 280 character-capped messages called “tweets.”

In December 2016, Morley became more involved in an advocacy role on Twitter by incorporating the “call-to-action” into his tweets. A call-to-action is a word or phrase that asks the audience to take action, rather than to simply inform. Morley starting working with a political action committee (commonly known as a PAC), a group that, among other functions, organizes calls-to-action. The PAC asked Morley to contribute to making calls-to-action for healthcare by reaching out to his senators and congressional representative through publicly available phone lines and email addresses.

The more involved Morley began, the more followers he gained on social media, including several high-profile individuals who are also diagnosed with lupus. As a result, he was contacted by the Lupus Research Alliance, which asked him to help them campaign in Albany (the capital of New York State) the following Spring (of 2017) – to speak on behalf of people with lupus and to advocate for legislation that affects lupus (such as a license plate designed for lupus fundraising).

However, when Morley returned to Albany in May 2017, members of Congress and the president were trying to repeal the Affordable Care Act – a decision that would harshly affect those individuals that depend on it for access to healthcare. In response, Morley used his Twitter account to speak to his followers and address the political climate with respect to the ACA.

The Affordable Care Act

Often referred to as “Obamacare,” the Affordable Care Act (ACA) was signed into law by President Barack Obama in March 2010 with the intent to make health insurance available to more individuals by expanding Medicaid eligibility and by making substantial changes to Federal regulations that the insurance provider markets of each US state must follow. The Act seeks to provide Americans with better health security through various reforms, including lower healthcare costs, expanded coverage and more options, and higher standards of quality care. You can access additional information regarding the Affordable Care Act by visiting healthcare.gov.

Morley first entered the political arena through his social media platform. Using Twitter, he reached out to New York 12th Congressional District’s Rep. Carolyn Maloney, who responded to him through a direct private message. This initial, informal introduction led Rep. Maloney to invite Morley to speak at an upcoming press conference about his experience navigating healthcare with chronic illness.
After a successful press conference, Morley continued his work with Rep. Maloney, collaborating on a Q&A session through Periscope – a mobile app owned by Twitter which allows users to broadcast real-time video live to their followers. The Q&A session reached 50,000 to 60,000 people and brought awareness to lupus in light of the then pending Senate vote on the repeal of the ACA. As a result, Morley felt compelled to travel to Washington, DC, during the Senate vote to campaign for healthcare rights on behalf of individuals suffering from chronic illness.

Self-Advocacy

Soon after he was diagnosed, Morley found that there was little research specifically lupus in men. (Because lupus affects women more than men by 10 to 1, much of the research focuses on women.) However, open communication with his doctors helped him understand his body and its functions better and, in turn, enabled him to start predicting when flare-ups (sometimes also called “flares”) will occur. He is now able to foresee a flare-up by “listening” to his body and recognizing that certain symptoms arise prior to flare-ups.

There are several types of advocacy that individuals with lupus can utilize to empower themselves on their healthcare journey. Having a good team of doctors in place equips people to gain control over their lupus. Morley’s transition from a patient advocate to “an accidental activist” has enabled him to reach large audiences and stand up for himself in ways he never thought possible. Although he has found his unique advocate voice and achieved success through social media and other routes (including his physical participation in Washington DC), Morley stresses that not every individual needs to work through these paths to self-advocate.

What Morley has learned from his experience advocating in Washington is that the volume of calls matter in every congressional office. Regardless of party, elected officials who are appointed to positions of influence within the Senate and House of Representatives listen to their constituencies. The below transcription is of an unscripted call Morley made during his presentation to show our workshop members how quick and easy it is to call your senators and let them know your position on a specific healthcare bill.

(Dials number.) “Yes hi, hello, good afternoon. My name is Peter Morley, and I’m calling from Congresswoman Maloney’s district. I just wanted to ask the congresswoman to vote ‘no’ on the tax bill.” (Inaudible dialogue on other end.) “Sure, I’m just going to leave my name, first name is Peter, last name is Morley and my zip code is 10011. And if you could please thank the congresswoman for everything that she does. Thank you so much, have a wonderful day. Thank you, goodbye”.

Find out how to look up your senators’ and congressional representative’s publicly available phone numbers below.

Advocacy Resources

How to Advocate on a Daily/Weekly/Monthly Basis Without Leaving Your Home

The federal legislative branch is composed of two houses: The House of Representatives and the Senate. These two houses make up the Congress. Each state elects two US senators and each district within a state elects one representative (congressperson).

All US state legislative branches except for that of Nebraska are also made up of two houses: an upper house (the Senate) and a lower house (called the Assembly, General Assembly, State Assembly, House of Delegates or House of Representatives). (Note: Nebraska has a single-chamber legislature.) Each state senator and member of the lower house is elected by a district that is determined by census data.

Contact Your US Senators and US Congressperson

US Senators from New York State
Senate Minority Leader Senator Charles Schumer:
schumer.senate.gov or 202.224.6542

Senator Kirsten Gillibrand:
gillibrand.senate.govor 202.224.4451

US Senators from Other States
Visit the United States Senate contact page.

US Congresspersons
Call the United States Capitol switchboard at 202.224.3121 and press 2. You will prompted to enter your zip code in order to be connected to your representative.

Contact Your New York State and Local Legislators

New York State Assembly
Visit the NY State Assembly Member Directory or contact the Assembly Public Information Office at 518.455.4218.

New York State Senate
Visit nysenate.gov/find-my-senator to contact your New York State Senator (no phone number directory).

New York City Council
Find your NYC Council Member (online only): council.nyc.gov/districts

 

Recommended Mobile Apps

If you have access to a smartphone or tablet, these free apps will let you know every time your US Congressional representatives vote, and how they voted on a given issue. They will also give you a call-to-action for the day. These free apps are available through the Apple Store or Google Play.

  • Countable
  • Voter
  • We the People
  • Votespotter
  • Congress
 

We hope that you find these resources helpful; they are provided for informational purposes only and are not intended to comprise a complete list. Links to sites are not meant as endorsements or recommendations by HSS or its faculty.

Learn more information about the SLE Workshop at HSS, a free support and education group held monthly for people with lupus, their families and friends.

Summary by Sarah Kencel
Social Work Intern and Coordinator, SLE Workshop
Department of Social Work Programs


 

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