/ Patients Have Power

Learning to advocate for equitable healthcare: How to make your voice heard


Our latest Patients Have Power episode is called "How can I make a difference today?" (You can subscribe to the podcast at Apple Podcasts, or listen to it with the media player above).

In this episode, we speak with Peter Morley, a self-described "accidental advocate" who, despite living with chronic conditions that often zap him of energy, still takes a before-dawn train from his home in New York City to DC to fight for healthcare access for all Americans...before taking the 7PM train back, after a day packed with meetings.

You can find Peter on Twitter at [MoreThanMySLE] (https://twitter.com/morethanmySLE).

Below is a transcript of the episode for your reading pleasure!

Peter Morley: There are a lot of people in this time in our lives that are doing things they never imagined that they would ever do, and yes, I’m probably one of those people, and I am one of those people because this isn’t something that I could even honestly say I wanted to do.

Aaron Jun: Hey, guys. On this episode of The Patient’s Have Power podcast, got a really special guest, Peter Morley, who is an incredible patient advocate. It’s a pretty wide ranging conversation about … Well, first of all, if you don’t know Peter, you really ought to. He’s an incredible advocate. Lives in New York. Takes these insane day trips down to DC at 3:20 in the morning on the train, comes back at 7:00 at night on the train back up to New York City, and has 32,000 followers now on Twitter, and is meeting with Governor Cuomo, Senator Schumer, his Congresswoman, all these folks. John McCain’s office. What we talked about is how he got started as an advocate in the wake of Donald Trump’s election in that December, and how difficult it was at first to get started and how he found his voice by opening up about his story as a patient.

I think any patient advocate, or anyone who’s listening out there who’s been wanting to get involved can learn a lot from this conversation, that it’s not easy to stay hopeful and positive, but that it’s worth it in that your story carries an immense amount of power. In this conversation, we talk about a number of different things. Calling your senators and your elected officials, that becomes a pretty common through line here. I’ve plugged them before. I’ll plug them again.5Calls.org. 5Calls.org gives you all the numbers of the folks that you need to call for your district just when you enter your zip code. It gives you scripts for all the things you care about. You just dial them up. Read the script if you’re not feeling confident, and I tell you, the more and more you do this, the more and more fun it gets, and the more and more you’ll open up about your story.

You’ll find your voice in fighting for the things you care about, whether it be healthcare, or immigration, or I don’t know, fiscal conservatism. Maybe you care about that, but if you care, you got to make your voice heard, and I think Peter is an incredible example of that. I’m going to plug one more thing, which is PatientsHavePower.com, it’s an initiative that we’re running here at Clara. Basically what we’re doing is putting the call out there to say hey, if you have a story about why healthcare matters to you, we want to hear it because in the next couple of weeks, there’s going to be a lot of stuff happening around healthcare, and we need to put the pressure on elected officials today.

It’s an amazing conversation and I hope you enjoy it as much as I enjoyed having it with him.

Aaron Jun: Hi, everyone, and welcome to the Patients Have Power podcast. It's your sometimes cohost, Aaron. This week, I have a really special guest. I'm so stoked to be speaking with him. I've followed his journey for quite a while on the old Twitter, and we got him on the show because he's a very gracious and patient person. Everyone, welcome Peter Morley to the show. Say hi, Peter.

Peter Morley: Hello, everyone. Whoever's listening, nice to come over your airwaves, or whatever you call it now.

Aaron Jun: The reason I wanted to reach out to you is because I think we're in this moment right now of it's a really interesting time for just about every traditionally marginalized population from populations of color to the patient population. The reason I wanted to speak to you specifically was because it seems like the Affordable Care Act is yet again under fire, and you've been doing some incredible patient advocacy and really making your voice heard. I thought it'd be really cool to be able to take the listeners through your journey from that very first moment when you decided enough is enough, I got to get involved to where you are now, where I think you were saying before we got on, the BBC's reaching out to you now. That journey is like a thousand miles long, and I just wanted to get into it.

Peter Morley: Oh boy. You know, I think I can safely say before December 2016, I was a very private person about my healthcare. I use a cane because I've had spinal fusion surgeries that failed, and I have issues walking and undulating, but other than that, a lot of the illnesses and conditions that I have are very visible. I know a lot of people who didn't know that I had cancer, or have lupus. Well, I'm on Twitter now so everybody knows. Everybody knows. It's in my profile. When I first got onto Twitter, and I'll get back to that in a second, but when I first got on to Twitter, there were like maybe one or two people who I actually knew personally.

Everybody else I met on Twitter and became friendly with, or actually became friends with, but going from a private person as I was, like I said, I did have spinal fusion failures. I did fight kidney cancer, and won that battle. I went into remission in 2016 before the presidential election. I did develop lupus, or lupus had just come out from all the stress of my surgeries. I have a lot of other conditions that I don't talk about on Twitter because most of them are unpronounceable. I can't even spell half of them. I have something called ... Excuse me.

I hope you have an editing button, or an editing-

Aaron Jun: Yeah.

Peter Morley: Okay, good.

Aaron Jun: We'll do a nice voiceover.

Peter Morley: Please. Oh my gosh, I can't even think of this word. It's three words. Oh, here. I've got it. Nodular regenerative hypoplasia, which is nodules on my liver. I actually have a non-cirrhotic form of liver disease. Thank you, lupus, for that but I have a lot of conditions that it gets too confusing and complex to search thinking about. Hey, that's just another one of my preexisting conditions. Going from a private person transitioning to a public person was quite the journey. As I was mentioning to you, during the 2016 presidential campaign, during the campaign my biggest fear with Trump was that he was going to repeal the Affordable Care Act, which meant repealing provisions for people with preexisting conditions amongst many, many, many other things.

It terrified me. That was the first thing I thought about when the votes started coming in. That night, I was in my apartment here, where I am now, alone. My partner was elsewhere, and I was on the phone with my best friend, and I just felt my whole body sinking into my couch because that realization of healthcare, of losing my healthcare, was horrifying to me. It was terrifying. It's my life. How am I going to afford healthcare and what am I going to do, and my doctors? My doctors, who I spent months, and sometimes years, putting a team of doctors together. When you have a chronic condition, these doctors have to speak to each other. I just saw my hematologist today, and I still have issues with it. He was supposed to get information from my rheumatologist for my blood work, and the last blood work he has for me is six months ago.

I still have issues like that, but that's manageable. We're talking about losing the people that know you intimately and help you keep breathing. I mean, literally. That is terrifying for somebody with a chronic condition like lupus that attacks your whole body, that you need specialists in every single part of your body. Lupus is a condition where your cells attack healthy cells. It affects us all differently. It's affected my liver. It's affected several parts of my body, but I also need, when my body becomes inflamed ... It's called the lupus flare, and during flares, sometimes you need a cardiologist, a pulmonologist, and several other specialists. There's all these people that are in place.

In my head, that's what was going on that night. Like oh my God, my doctors.

I just felt my whole body sinking into my couch because that realization of healthcare, of losing my healthcare, was horrifying to me. It's my life.

Aaron Jun: That's a lot.

Peter Morley: Yeah, I'm going to lose my whole team of doctors. It was frightening. It's like, I guess if you're a sports fan, like your favorite team gets traded, or leaves your city. Sorry, your favorite player, I meant to say. Lupus also gives you what they call brain fog, too, so pardon me if I forget things. Anyway, it's pretty much blame everything on that.

Aaron Jun: All I was going to say is I think personally speaking, I've had the fortune of being relatively healthy my entire life, and before I got into the whole healthcare space as a career basically, I had no idea that autoimmune diseases and these chronic conditions were as debilitating as they were. It wasn't until I saw it up close in some of my coworkers. Our first full time engineer on our team is a guy who lives with a really rare autoimmune condition, and the woman who runs our patient advocacy program lives with a number of autoimmune conditions, and I never realized that there was this whole segment of the population who ... Like you said, it's an invisible illness and you would never guess it.

As a “healthy” person, you just have no idea what goes into maintaining even just a semblance of a decent level of energy, right?

Peter Morley: Absolutely. The best thing that anyone with lupus or any other debilitating disease to be able to manage their energy and be stress free, because stress is debilitating for your illness ... I'm sure there out there. I'm still trying to find the study that depicts the type of stress that people are under with chronic illness, or autoimmune disease, or any type of chronic illness that the effects that this is having on them just by the thought of their healthcare being wrenched away from them. I think of that all the time. I think of the people that will reach out to me that are so frightened, and they don't have any hope. I try to give them hope and encouragement because we all need that, but managing your energy is crucial.

If I had loads of energy, first of all, I would be working probably. I don't only have lupus, I live with chronic pain and other chronic illnesses, as well, so I have many different things that I get treated for. Lupus has become my main focus. It didn't used to be. I used to manage my spinal pain. I have a lot of lumbar pain that I live with and cervical pain, but getting back to my advocacy, after the election, I didn't have any hope. I felt really terrified for the first time because I thought that we were going to have a leader that would support our healthcare that was in place, and support the law of the land. I looked for any glimpses of light, and everything I read had screen grabs of people on Twitter, and the things that they were saying, and the things that I was reading were giving me hope.

Whether it was Rob Reiner or Scott Dworkin, or whoever, it drew me to Twitter. I was somebody who wasn't on Facebook, wasn't on Twitter, wasn't on any form of social media. Twitter, unlike Facebook, allows you to navigate without actually ... You're not able to comment, but you can look at the tweets without actually being on Twitter. The more tweets I saw, and the more hope I got, the more I wanted to start interacting with these people, so I joined Twitter in December of 2016.

Aaron Jun: That was the beginning of all of this.

Peter Morley: That was. That was the beginning, and my main focus when I first came to Twitter was to bring awareness to men with lupus because we represent about five to 10% of the entire lupus population, and there's 1.5 million live with lupus in the United States alone, so that being rare in itself, I wanted to try to bring awareness to it.

I started following the people that were giving me hope, and I started seeing some of the messaging about the things that we could do to make a difference like calling our two senators and our congressperson. I had called people in New York State, where I live about lupus bills in New York. I called my state senator in the past, and my assembly person in the past to support these bills.

A bill for something positive for lupus is a lot different then protecting the entire healthcare system. It seems a lot more doable.

Aaron Jun: Yeah, really.

Peter Morley: Exactly, but I remember I spoke to one office in New York, and I spoke to this woman. I believe it was [inaudible 00:18:35]. I don't remember to be quite honest, but I remember what she said to me. She said to me, “This is what more people should be doing. I am so thankful and grateful for your call because we get so few phone calls here.” I don't remember where in New York it was but just to hear that, I wasn't expecting. I just wanted to support the lupus bill for my lupus organization. To hear that, it resonated with me.

Aaron Jun: This was pretty early in your journey here?

Peter Morley: Yeah, this was even before. This was like 2014.

Aaron Jun: Oh, this is like private citizen.

Peter Morley: Oh yeah. This is my own private thing, but I remember that when I started seeing the messaging about calling your US Senators and calling your US Representative and using your voice. I remember the first time I called, I was like oh my God, what do I say? What do I say?

Aaron Jun: Yeah, right. No, I had that same feeling.

Peter Morley: Right. You can say as much or as little as you want. The thing is the most important thing to note for yourself is no matter what you say, or how you say it, as much as you want or as little as you want, it'll still get logged the same. As somebody who deals with chronic illness and energy, I try to say as little as possible and try to be as effective as possible. It wasn't until recently that I actually learned that you can make phone calls for healthcare, but you can also mention if you're concerned about immigration or gun reform. You can say that all in the same call and they all get logged. You don't have to call back five times in a day, or a week, or whatever.

You can say that. My calls are basically I'll say something. I think I even cursed a call, which went really badly because it was unfortunately a time where there was a heavy volume of calls and I was on hold for a few minutes-

Aaron Jun: Not the most riveting content.

Peter Morley: No, it wasn't, but people actually watched, which I appreciated. The most important thing is to call. When you call, here's just a basic example top of my head. I'll say something like, “My name is Peter Morley. I'm calling because I want ...”

My senators are Schumer and Gillibrand, so I'll say, “I'm calling to thank Senator Schumer for supporting healthcare. I'd like him to not support the Supreme Court nominee.” Then, I usually ask is the senator receiving a lot of calls about healthcare today because I want to know. Then, I'll go and I'll tweet that, and I'll say the senator needs more calls. The biggest fallacy that I've learned is people think because you live in a state, or a district, where your senator or your congressperson supports healthcare, or whatever issue it is that you're concerned about, that you don't have to call. That is so not true.

These senators and congresspeople speak to their counterparts, and it is so crucial to get that volume of calls and put the pressure on, because at the end of the day, these people work for us. I work with these people, but they do work for us, and we elected them. They answer to us. Even though some of them don't think that they do, they do.

It is so crucial to get that volume of calls and put the pressure on, because at the end of the day, these people work for us.

Aaron Jun: Yeah, some of them seem to definitely have some other ideas in their head, but the term is public servant, right? It's a life of service.

Peter Morley: It is. It is.

Aaron Jun: It's totally true. I live in San Francisco now, and before that, I lived in Boston. Before that, I lived in San Francisco. Before that, I lived in LA.

Peter Morley: Oh, there you go.

Aaron Jun: Even when I was growing up, you just felt like you were sheltered from some of the scarier things that you would hear about just because you felt that your politicians were in line with your views, but that whole idea of bombarding even the ones that are on your side to make sure that they know where their base and their energy and their support is really coming from. That's something I've learned as well, and it's been really empowering because now I make my phone calls every morning, and I don't feel like I'm wasting my three minutes.

Peter Morley: Oh, no. Oh, no. Honestly, I think I said this in a tweet. If the estimate, or the current estimate ... It keeps changing. I see 130 million with preexisting conditions. I see 133 million. However many, if only one percent of the 130 million people called in a day, which would be 1.3 million, that would totally crash the congressional switchboard. If one percent called, it would make an amazing difference. Healthcare is probably the most unsexy topic. You'll never see that as a leading story unless it is on the chopping block, so **my job as a patient advocate is to never, ever let it get near the chopping block. **

Aaron Jun: To keep it completely unsexy.

Peter Morley: Yes. Yes, as un-disgustingly unsexy as possible. That’s my job to never do that, but it’s frustrating because obviously it’s an oxymoron. At the same time, I can’t go to a media outlet, because they don’t want to talk to me about it until it’s dangling by a thread. Unfortunately, that’s where I started getting involved with my congresswoman personally, although it’s been one of the most meaningful relationships in my life, it wasn’t until the AHCA, the first part of what became to be known as the skinny repeal, where I got involved with my congresswoman. It is Congresswoman Carolina Maloney in New York 12th District, or however you say it.

Aaron Jun: I actually do want to get into that, because before we started recording, you mentioned that you felt like an accidental advocate. I’m looking on your Twitter timeline right now-

Peter Morley: Oh, are you? God, that’s scary.

Aaron Jun: I see selfies with Governor Cuomo. I see you sitting with minority leader, Chuck Schumer. I want to know-

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Peter Morley: Yeah, I have done that.

Aaron Jun: I know that the BBC wants to talk to you, and they’re British.

Peter Morley: Very British.

Aaron Jun: They’re very high class. I lived in London for a while. They’re very discerning. I want to know why you feel like an accidental advocate, but I also want to know what the first maybe 30 or 60 days of you joining Twitter felt like. You must have been at some point like me, with 120 followers, and you’re just tweeting into the wind. Unlike me, I guess you must have followed a lot of people who gave you a lot of hope. I guess I just ended up following a lot of news outlets that gave me a sinking feeling in my stomach, but either way, you are now sitting at 32.2 thousand followers. What I want to know, and I think what some of these advocates out there, or patients out there, or caregivers, or anyone who has an interest in joining the fight but don’t know how to get started, or maybe they had one discouraging moment and they’re like, “Okay, maybe it’s not for me.”

What happened in those first 30 to 60 days that were interesting, that might have been depressing or discouraging, that kept you going. Let’s get into that a little bit.

Peter Morley: I joined at a really interesting time on Twitter because it’s changed a lot since December 2016. I joined where there were a lot of these resistance people that were using these Star Wars characters and Star Trek characters. I was following Captain … I mean, I’m still following Captain’s Log, but he was the leader of our ship. There was Mr. Spock and there’s Princess Leia. There was just a whole bunch of array of people that you felt, and you hoped, that they were who they said they were. I really didn’t think about any Russian bots or anything. That wasn’t really the premise at the time. There was a real camaraderie. There were people like myself who understood that levity, that great … I’m trying to think of the right word here. There was a feeling of doom.

There was a great emptiness in my heart, and I was trying to fill it somehow because I didn’t have a lot of hope for our country. If our country elected somebody I consider to be a monster, and a man who assaulted women, it was disgusting and embarrassing and disgraceful and we were supposed to normalize this person. We were supposed to get behind this person, and I couldn’t authentically do that. It’s like I lived through 9/11. I lived in New York during 9/11, and I voted for Al Gore. On the night of 9/11, and hearing George Bush speak … W. … I rallied behind him. He spoke to me. He resonated with me. Donald Trump has never resonated with me. I used to enjoy him on the Apprentice and the Celebrity Apprentice because that’s-

There was a great emptiness in my heart, and I was trying to fill it somehow.

Aaron Jun: That’s his place.

Peter Morley: Right. That’s entertainment. I don’t care if he’s a real person or not because he’s not our president and he doesn’t have any power, except with NBC. It was beyond terrifying. There were other people who felt that way who were out there, so that’s who I gravitated towards and we supported each others work and advocacy. I started sharing about my healthcare issues, something that I never thought I would ever do. Here I was sharing it with a bunch of anonymous accounts, but they would send me direct messages and they would confide in me who they were, what they did, meeting with their legislatures and they would give me some guidance because I really didn’t know what the hell I was doing, and honestly, all you people who follow me on Twitter who are listening to this, you think I know what I’m doing. It’s all smoke and mirrors. Sorry to burst your bubble, but I do my best.

There are a lot of probably ways I could do things more effective, but during that time, there were these fall back parties. There were these things on Friday nights. It was awesome. Everybody built up their base, and that was the whole idea and the whole premise. These were real people. They were anonymous, but there weren’t only anonymous accounts. There were other people like myself who were looking for guidance and looking for hope, and I never saw myself as a leader. I saw myself as somebody who had a story to tell, and somebody who had been on a healthcare journey, and had been through a lot. I faced my mortality several times. I had kidney cancer. I could have died. I had brain surgery. I had a tumor in my pituitary gland. I lost part of my vision and got it back. I had been through a lot, and in my mind, in my heart, I felt I didn’t go through this all for nothing.

It has to mean something, so that has been my driving force through all of my patient advocacy and through all of me speaking out on Twitter. I did in the beginning, I held back a lot. The most important thing that I think repels me from some people on Twitter is if I see any type of negativity, I tend to stay away from that because as somebody who manages their energy, it drains me of energy, that kind of negativity. I try to stay around people and accounts that support me. I support them, and it’s a really positive experience and gives me information. Not only information, I don’t only look at tweets for information, but I look for tweets that give me a purpose, an action. It’s like if I see research from let’s say the Kaiser Family Foundation, and it’s incredible research on healthcare. Anyone who’s listening to this should absolutely be following them, or at least looking to their information because this is all free, amazing stuff.

A lot of people don’t know about it, so I used to take a lot of their information and I used to put that out there for people. I think that’s how I started getting recognized. Just finding information, finding little pieces of information and just trying to amplify it, and I don’t know, I guess I resonated with them and they resonated with my journey, whether they had lupus, whether they were kidney cancer survivors, or cancer survivors, they related to me in some way, or living with chronic illness. I have a big obviously cross section of illness, which leads me to have cross section of followers. I started looking to the former head of Health and Human Services who ran Medicaid and Medicare, Andy Slavitt. I tweeted at him, asked him a question and he DM’ed me. He’s a very generous and gracious man.

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Aaron Jun: Right. That’s really cool.

Peter Morley: He’s incredibly supportive. Yeah, just amazing, amazing man. I am not going to say that he would do that for everyone. I don’t know what I said to him that resonated with him, but that came later in my advocacy. In the early part, this is what it was about. It was about messaging. It was about building my base. It was about looking for people on Twitter that I felt were positive in their messaging, and had something to say and could give me the guidance and encouragement that I needed to do the things to save whatever was going on. In the beginning, it wasn’t just about healthcare for me. It was like everything was under attack, and it was about all of the appointees, and stopping this person, stopping that person, with DeVos and Price and all these people.

Aaron Jun: It was quite the roster. It is quite the roster.

Peter Morley: It was. Yeah, unfortunately as bad as the head of HHS is now, Price was far worse, but still, she’s no picnic. Azar’s no picnic. They’re awful, horrible people, and I am not afraid to say it. I’ve said it many times on Twitter, but still I won’t curse on Twitter. I have. I try not to. I didn’t use the word shithole until our president did, and he didn’t say that on Twitter, of course. I just try to keep everything positive because I do try to give people encouragement, and I want to give them hope because if I came to Twitter to be negative or spread negativity, that would defeat the purpose of what I was doing there in the first place. I came to Twitter to seek a positive outlet to effect change, and if I was on Twitter to spread negativity, then that would completely drain me and there would be no reason for me to be there.

Aaron Jun: It’s interesting that you mention positivity, because I do think that that word has gotten almost weaponized by people having an argument. Not a debate, but an argument. One of the things that I’ve noticed is, “Oh, just be positive. Don’t complain so much. Blah, blah, blah.” What I think you mean by positivity is I am trying to give people an understanding of their own power. I’m trying to get them to understand that their story is power, and I’m trying to get them to engage in a machine that seems scary but is their own to build and break and reform in the way they want. I think that’s what you mean by positivity. I think there’s a side of this that people are using to say, “Well, positivity is just letting things happen. Positivity is about being almost apathetic.” I think that’s probably the exact opposite of what you’re advocating for, right?

Peter Morley: It’s the exact opposite. I came to Twitter to take control of my life and to make positive change, and to encourage people to do the same, and that is absolutely what I mean by positivity, and to spread positive messages, and to give people hope and to get hope, too. I need hope. We all need hope everything single day. There are days where I can’t get out of bed in the morning because of my own illness. Again, it doesn’t serve me to get on Twitter and read a whole bunch of depressing tweets because I’ll just get back in the bed. Sometimes, you have to just really dig deep into the crevices of your soul and pull out something positive, but positive things feed positive things, and it creates a wonderful flow of energy and kindness, too. It brings a lot of kindness.

People have come at me. Trolls have come at me. People have tried to be negative. You know, it’s fine. Again, you can say whatever you want to say to me.

I faced death. To me, there’s nothing worse than that. Call me whatever slur you want to, make fun of my appearance. Whatever you want to do, fine. Go right ahead, but I’m on Twitter because I want to help try and save healthcare. That’s all I want to do. I’m not saying that I’m going to go away after that happens, or after Donald Trump goes away, or this whole regime goes away. I don’t know. I don’t know anymore. I started off by saying if I could affect positive change in somebody’s life, I’ll shut my Twitter account down. Honestly, that happened a week after somebody said that what I said to them changed their life, made their day, or whatever. It felt so good that I was like okay, I changed my mind. I’m going to stay on Twitter.

Aaron Jun: I love that. There’s an idea here that I want to get into, and it’s this idea of this I think particularly for people … I’m actually not sure. It was just your birthday, by the way, so happy birthday. I’m not sure-

Peter Morley: Thank you.

Aaron Jun: I’m not sure how old you are. You don’t appear particularly old or anything, but I think there’s a demographic that’s certainly out there that’s very still a little too cool for school, still wearing their sunglasses and saying, “You know what? It’s all over. You know what? Who cares? Nothing matters. Ha, ha, ha. Giant meteor 2020.” I can not stand that stuff, either. I’m not a particularly happy go lucky guy, but in my mind, if there’s one chance that something’s going to work out, you just fixate on that one chance and to hell with the rest of the other probabilities because that’s more likely to happen anyways, so why bother worrying about it? Let’s worry about that when we get there, and worry about making this one possibility a reality whatever it takes and no matter how long it takes, and no matter how hard it is.

The thing that really inspires me about folks like you is what you just said about some days you can’t even get out of bed, but I think you’ve been a lot of places over the last month, right? Or, you’ve engaged with so many people over the last month, even in the midst of all that.

Peter Morley: Yes, I would say that’s true, but I would say at least half of those days, I’ve had a lot of issues. My experience is certainly not typical and everyone manages their care differently, but in my experience if I expend a lot of energy in a day like any of my trips to DC, I have to make sure I rest three days before and three days afterwards at least. My energy is all harnessed for the trip into everything that I do when I’m in DC. Even there, I still have such a difficult time sometimes managing. I can’t say no to a meeting. The most meetings I ever had in a day was 16 in January of this year.

Aaron Jun: 16?

Peter Morley: 16 meetings, and all in the House of Representatives.

Aaron Jun: Oh my God.

Peter Morley: Yeah, that was crazy. That was a crazy day but I was ambitious, I wanted to do it. I was going there for the day. I always predicate my trips on the fact that because of my illnesses, because of my conditions I never know when this trip may be my last trip, so I always want to go out with a bang. That’s my motivation for taking meetings, getting meetings, setting the meetings. To the people who think that their voices don’t matter, it’s not true. One voice can affect another voice and another voice and another voice. All you need to do is change one voice, and there just is a whole collection of voices, and to inspire people to do it. I mean, I’ve seen people who used to feel like you just described, and I’ve seen them see something that I’ve done and there’s nothing that they can say about it. They can’t deny that something positive happened and something has changed.

Do I go into a Republican office and expect that they’re going to number one, listen to anything I have to say, two, change their minds? Absolutely not, but they need to hear the stories of their districts, or their constituencies depending on if they’re a senator or a congressperson. You know, going into a Republican office is more like getting information, seeing where their mindset is at, seeing what their perspective is. There’s definitely a different energy in a Republican office, I have to say, except for a very select few. I won’t signal them out.

Aaron Jun: Right, all we need are a select few.

Peter Morley: Exactly. There are others. I can’t say why they vote the way that they do, but there are Republican offices who have voted not in the way that I would like them to vote, but they are particularly welcoming to me in their office. There are other offices where I’m like I can’t wait to get the hell out of them.

It’s a horrendous feeling. It’s holding your breath for 20 to 30 minutes, sometimes less. It’s ugh. It’s like your shoulders shrug, and it’s particularly negative. Again, I always deem the person trying to look for something positive in this situation, what is their perspective? How can I share that information with their constituency, share their messaging so maybe the democratic candidate in that district can garner that information and use that information. Sometimes it’s useful in that way. There’s always a way to utilize any information I get, so every meeting that I’m in, I try to make useful.

Aaron Jun: Well, it’s interesting. I was just listening to another podcast that you were on a couple of months ago, and you mentioned that people aren’t doing a great job of listening to the points from the other side, and that you feel like you’re a conduit just traveling between constituent to the office, from the office to the other side. Across enemy lines, basically.

Peter Morley: Yes.

Aaron Jun: First of all, that’s a big responsibility that you’re placing on your shoulders. Doesn’t that get tiring? Aren’t you tired?

Peter Morley: I don’t know if tired is the right word. I think it’s more frustrating. I’m not tired because I feel like there’s no throwing in the towel because throwing in the towel means giving up on our healthcare system. That’s not even a consideration.

Aaron Jun: Sure.

Peter Morley: Tired, to me, is not the right word. It’s frustrating and yes, it is a huge responsibility. That’s why I encourage other people to be advocates and other people to go to DC, and not only go to DC. They don’t even have to leave their houses. Like we talked about earlier, they can call their representatives. Or, they don’t have to go to DC. They can meet with their representatives in their own district. I had a friend of mine go to Washington with me in May, and I helped him set up a meeting with his congressman in his own district, and he met with him face to face. That was an amazing moment.

He got to say things to him that he could have said to his staffer, but to say to your own congressperson it’s more meaningful and in your own district. There are a lot of people in this time in our lives that are doing things that they never imagined that they would ever do, and yes, I’m probably one of those people and I am one of those people because this isn’t something that I could even honestly say I wanted to do. The day of the skinny repeal, or the vote-a-rama on July 27th of 2017 … My birthday is July 26th-

Aaron Jun: Yeah, I was just going to say. The day after your birthday.

Peter Morley: It was, but the day before my birthday on July 25th when I knew that they were going to do the vote-a-rama on that Thursday, I decided I was going to go down there. I just decided I was not going to celebrate my birthday. I was going to put my birthday on hold. I was going to go down, and I didn’t know what the hell I was doing.

Aaron Jun: From New York to DC.

Peter Morley: From New York to DC, that’s it. I was going to go down there. I think I saw my cardiologist. I was sitting in her lobby, and I was crying because I was so upset. John McCain had come back to DC, and he moved the vote. He moved it, or just voted on it continuing. I don’t know the right term for it. I was so furious about it. He could have stopped it right then. I was like wow, it would be such a great birthday present just to put an end to this now. I love birthdays. I’m somebody who actually enjoys birthday, but I couldn’t enjoy it. I felt joyless. I’m like I need to do something. I felt this incredible calling to go to DC. I talked about it with several people, and then I talked about it with a civil rights attorney, who basically guided me around DC on July 27, 2017. He was the only person who encouraged my trip to DC, and his name is Adam Fernandez, who was an anonymous account at the time.

He’s no longer anonymous. He advocated my trip, and he taught me that the most effective people on the Senate to speak to are the people on the Senate HELP Committee that make all the major decisions on healthcare, and especially the Affordable Care Act. Those are the people. Casey. Oh my Gosh. Bennet. Collins, Murkowski, Alexander, Murray, Hatch, Roberts. All these people. I could go on, but go look it up yourself, too. That’s why I’m very involved with Patty Murray’s office and Senator Alexander’s office because those are the people who make those decisions. I don’t even go into those meetings with stories from their constituencies anymore. I go into those meetings to just discuss healthcare because that’s where the conversations have evolved to. Fortunately they recognize me as a patient advocate and somebody who can help effect change.

Now, that wasn’t the same person who went down there on July 27, 2017.That person isn’t the same person that you’re speaking with today. That person did not know those things. That person went down there and just felt that magnetic pull to be there in that moment because my last meeting of that day,

I went into John McCain’s office three times. They wouldn’t see me, and I went back. On my third time, I met with his legislative assistant. I was telling her my story about having lupus. She had started to cry. That was the first time I had that response. I had gone into about eight offices that I had meetings. I had gone to more, but I actually ended up having eight meetings spontaneously, but that was the first time I actually sat down with somebody who cried from my story. She confided in me that her best friend had lupus and had moved from Washington because of the climate, and needed a drier climate.

To me, it was a very compassionate, very sympathetic meeting. I went home on an 8:00 train, and got into New York at 11:00. I was so exhausted. I just passed out-

Aaron Jun: Yeah. You’re going into Penn Station at that point? At 11:00?

Peter Morley: Yeah.

Aaron Jun: Then, I don’t know which borough you live in but…

Peter Morley: I live in Manhattan.

Aaron Jun: Okay, so at least that’s not too bad a trek.

Peter Morley: No. Fortunately, I live very close to Penn Station. I’m very lucky that I can almost walk to Penn Station, and then where Union Station is located, I can basically walk, depending on how I feel, to the Senate and the House buildings.

Aaron Jun: That’s awesome.

Peter Morley: It is. The biggest traveling is the train, and it’s not the worst thing in the world. It’s not the best thing in the world. Anyway, to continue this story, I was exhausted. I remember sleeping until about 9:00 or 10:00 the next day.

I woke up to John McCain and my friend, Adam Fernandez, the civil rights attorney, said, “Peter, you saved healthcare.” I was like, “No, I didn’t. You got to be kidding me. Come on. That’s ridiculous.” He was like, “I was in that meeting with John McCain’s office.” I was like, “No, no. That’s definitely a myth.” John McCain, I believe, knew what he was doing the whole time. At least, I believe that in my heart. The biggest takeaway that I had from that trip is that it was so meaningful to go there. Those halls have a lot of history in them, as well. They have a lot of wonderful laws were created in those halls.

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Aaron Jun: Some bad ones, too.

Peter Morley: Some bad ones, too, but a lot of wonderful ones. I’m a history buff, and I enjoy it. I had never been to DC before then. I never on a school trip, never on a visit, so that was actually my first time in Washington. What a way, what an impactful way. At the end of that day, I had already been advocating with Congresswoman Maloney, I set up a Periscope with her and we did a Periscope. I know it’s still on Twitter, but it’s just interesting. I haven’t watched it for a while. It’d be interesting to go back and see that Periscope and see that person. When people say things to me like, “Peter, you’re my hero.” Or, “Peter, thank you for everything you’re doing.”, I don’t want to say I don’t appreciate it, because I do. I appreciate anything anybody says to me, and the support is what keeps me going and gives me that energy, but at the same time, I never like to see myself as a hero because I don’t want people to think that what I’m doing is something that they can’t do.

Everything that I do is something that anyone can do. All it takes is your own voice and your own motivation to do, and we all have a unique voice and a unique perspective, so there are things that other people can do or say in ways that I couldn’t even possibly say.

A hero, to me, is Superman or something like that. It’s somebody who does things for thousands or millions of people. I am taking those stories for people who aren’t able to make the trip to DC, or for whatever reason, their chronic illness, they can’t interact with their congressperson or senator. There are millions of people who could do what I do on a daily basis.

It’s a conscious choice that you can make, or you do make. Spending two or three minutes of your time is like brushing your teeth, or putting on your clothes, or eating your breakfast. It’s really just a routine to me. It’s something that I feel that these are the times that we live in and we have to make those choices for ourselves and future generations. We have that responsibility.

I am taking those stories for people who aren’t able to make the trip to DC.

Again, I live with chronic illness, so I don’t want to say we’re all dying, but I don’t know when that time is for me.

I’ve had a couple of surprises in my life. I approach things maybe in a different way than other people do, but I try and look at living in this moment, and in this moment, what I feel I need to do for myself and for our country is to use my voice and to contact my senators and my congressperson, and encourage people to do that same because that’s what I’ve been told by Leader Schumer and Congresswoman Maloney personally several times. That does make a difference and they do listen to us, and they do factor that in. It is, and this is a quote right from the leader, it is the volume of calls that saved healthcare last year. That’s what did it. It saddens me when I do make some of these trips to DC that sometimes I’m the only person walking in those halls.

That does sadden me, but I will keep doing it, and I will keep encouraging other people to do it because the moment this becomes the sexy topic is the moment that we have to really worry.

Again, there are many wonderful patient advocates out there. Too many to mention here, too many to mention. I am so appreciative for everyone who uses their voice. Again, it doesn’t have to be to my level or my advocacy. We all bring something, but it’s the collection of all of us that needs to happen to keep our healthcare. That’s what keeps motivating me.

Aaron Jun: I love that. Well, one of the last things I’ll say is I just remember those amazing photos of the disability advocates who were basically just camping out in the halls of Congress around that time when you went. I don’t know if you crossed paths with them, but I know for a fact that it stirred action amongst the people I knew because they saw people in wheelchairs getting dragged away by police and they were like, “Hey, what the hell is going on in Congress? This is not the country that I’m paying taxes in.”

Peter Morley: I’ll add a little something to that. I’m not going to speak to it too directly, but a lot of those people are on SSDI. You could technically lose your disability if you get arrested, or you commit a crime, so they’re not only putting their lives on the line, they’re putting … I’m sorry. I take that back. They are putting their lives on the line and more than you know. That’s a level I can’t even comprehend. I appreciate it, but that’s way beyond my scope of comprehension. It is incredibly heroic. It saddens me, again, that we live in times where people have to take such drastic action. I wouldn’t necessarily say that I encourage it, but I understand it. I understand it. I think that apathy leads to negativity in what I have seen in my advocacy. Here’s the thing. In the amount of time it takes to make a negative tweet, or to say something negative about your own senator or your congressperson, is the amount of time you could have spent calling to encourage them to fight for healthcare.

If everybody in a red state, or a purple state, called their senators and their congressperson, that would be impactful. It just really takes one story for somebody to connect the dots. It really does. You never know when your story could be that one story.

Aaron Jun: Amen. Oh, man. I’m sorry. You got me very emotional now so thanks for that. I might edit out my squeaky emotional voice now, but one last thing, which I think is the through line that tied everything together that we were just discussing. If I say patients have power, what does that phrase mean to you?

Peter Morley: Again, I hate to use this word over and over again because I feel like I have, but empowering yourself is the most impactful thing that you can do. There is not greater tool. There’s nothing I can say or encourage somebody who is a patient more than using their own voice. When I say voice, I mean, you know, an email. It doesn’t have to be their own physical voice. To just say something. By not saying something, you’re saying you don’t care. By saying something, you’re trying to make a difference. Listen, no matter what happens with healthcare, I’m doing everything in my power to stop any sort of repeal or cuts to Medicaid or Medicare, or any repeal to the Affordable Care Act, or any protections removed from preexisting conditions, but at the end of all this, and that’s what I thought when I went home that day of the skinny repeal vote, the vote-a-rama, I went home and I thought to myself no matter what happens, I felt I did everything in my power to could to make a difference.

I could live with it. I would figure out a way to make it work. I don’t know how I would do it, but I would figure it out. Again, the reason I came to Twitter was for hope, so I have to give hope to myself. By taking back control over your life is by saying something. Being positive, trying to make a change, or trying to help other people. Speaking for other people, if you already speak for yourself. You could speak for a family member, but empowering yourself and using your voice is the most impactful thing you can do in this time.

Aaron Jun: All right. Well, Peter, thank you so much for your time. The listeners won’t know this, but we had about 30 minutes of technical squibbles before the interview.

Peter Morley: Oh, no.

Aaron Jun: Well, I mean before we even started recording, right.

Peter Morley: Oh, yeah.

Aaron Jun: No, I think the recording will be just fine.

Peter Morley: Oh, God.

Aaron Jun: After Peter and I got off the call, we kept talking for a couple more minutes and there were just some snippets that I really thought were powerful, and in his words, impactful, so I want to include them here because I think anyone who wants to make their voice heard, anyone who wants to get started can learn a little something from these snippets, so here they are.

Peter Morley: I don’t want to hit you over the head with this point, but everybody has that ability to make a difference. It’s not I’m just a person. I don’t really feel like I’m anyone special. I didn’t come to Twitter to get 32,000 followers. I don’t think about it. I think about how can I make a difference today, you know?