Mr. Morley goes to Washington: How patient advocacy changes policy and politics

Peter Morley on the promise of 2019 from Clara Team on Vimeo.



Aaron Jun: Peter, here we're on Broadway with all the sounds of New York City below us.

Peter Morley: Love it.

Aaron Jun: Thanks for making the time.

Peter Morley: Absolutely. It's a pleasure.

Aaron Jun: So when did you get back last night?

Peter Morley: I got back. Do you want the exact time?

Aaron Jun: Yeah.

Peter Morley: I got back at 9:52 PM I believe.

Aaron Jun: And that's like a three hour train ride.

Peter Morley: Yeah, it's about a three hour train ride and I started at my normal 3:25 AM on Monday morning. It was nonstop for like almost 48 hours.

Aaron Jun: I don't know how you do it.

Peter Morley: I don't either.

Aaron Jun: This is the 13th time you've done it.

Peter Morley: It is the 13th time I've done it and it's only the fourth time I've stayed over, but there were so many things to speak about that I wanted to ensure that I made a huge push because we'll talk about this more in a bit I'm sure. But the ACA open enrollment for most of the country and this Saturday, December 15th and I wanted to definitely bring that awareness.

Aaron Jun: Right. Got It. So you were down there for the 13th time. When we spoke to you last time, we were running into the midterms and all of that ambiguity was out there and we weren't sure what was going to happen. I definitely want to talk to you about what the fight becomes now for healthcare, but it seems you had a very specific thing on your mind this time around and that was like you said the ACA open enrollments. Numbers are down this year, right?

Peter Morley: They are down. I don't want to discourage anyone from setting up or making sure that their plans are still active or they're. There are some states that don't have auto enrollment-

Aaron Jun: Right.

Peter Morley: Just because the numbers are down, it doesn't mean that the marketplace is suffering. It just means that last year we had a record year because it was basically the now or never mentality. So everybody was going and trying to register and then everyone was encouraging people to register. There was so much that was at stake and there still is. But I think people expected it to be down. I don't think you see this engagement as you did last year but for instance in a state like Rhode Island and here's a state that ACA works extremely well because they have two insurance companies. It is a rather small state, but the example is there is auto enrollment and just because there aren't as many new enrollments doesn't mean that the ACA is doing worse in that state. It is actually doing better than it was last year because of the auto enrollment. That's an important key. You could say that the enrollments are down, which is not a surprise to any health policy whack, but the fact that there are three enrollments in the states that are on the federal exchange is extremely helpful. Unfortunately there are people that are going off the exchange and going on to the short term plans.

Aaron Jun: Right.

Peter Morley: That are junk plans, junk. I understand with the high deductibles of premiums of some ACA plans, but they do cover you and they do cover preexisting conditions.

Aaron Jun: Right.

Peter Morley: And these short term plans that were put into effect by executive order that were meant to, as the Trump administration said, "Give alternative solutions." The thing is that they won't cover, hey won't treat your cancer, that you have a preexisting condition until you need your radiation or your chemotherapy.

Aaron Jun: Right. So not exactly the most awesome options out there.

Peter Morley: Do not ... To encourage if it seems too good to be true-

Aaron Jun: Don't buy it for your health insurance.

Peter Morley: No, absolutely not. It's a waste of money.

Aaron Jun: So you were down in DC 13th time, lucky number 13 all that stuff, 48 hours this time for the fourth time.

Peter Morley: Yes.

Aaron Jun: So you must have had a whirlwind trip.

peter-airport

Peter Morley: It was. I'm still processing.

Aaron Jun: For context when you walked into this lovely little room that we've set up in, you seemed almost like in a daze, right?

Peter Morley: No, you're fine.

Aaron Jun: And you were running through the itinerary of what had happened?

Peter Morley: Yes.

Aaron Jun: So walk us through some of the highlights of what had happened because you were saying something to the effect of like, "It's funny because they know who I am now or."

Peter Morley: Yes. I worked mostly December. I had two meetings on the house side but most of ... as in the last few trips that I've taken, most of them have been taking place on the Senate side. The August and September trips that I took were to speak out against the cabinet nomination.

Aaron Jun: Right.

Peter Morley: And the trip that I took in November was for the public charge ruling to make people who are naturalized citizens or-

Aaron Jun: Like me.

Peter Morley: That yeah. Or people who are visitors to take their healthcare away from them. So that was an interesting intersection of advocacy within immigration attorneys. That was really cool. But what was the question again?

Aaron Jun: Walk us through some of the highlights of what...

Peter Morley: Thank you. Sorry, I apologize.

Aaron Jun: No, it's okay.

Peter Morley: My lupus far gets better with me, that's the wonders of lupus. You can keep that interview on because that is-

Aaron Jun: It's authentic?

Peter Morley: Literally what I go through.

Aaron Jun: Yeah.

Peter Morley: Yeah. I'm sorry.

Aaron Jun: It's an authentic look in to the life.

Peter Morley: So much so true and anybody out there suffering from lupus can totally relate or any brain fog, I believe with MS and Fibromyalgia as well, which I have in my house as well too. But the highlights. Well, I had been gone working with the ... So in the Senate, there are two centers, one for the Senate Democrats, one for the Senate Republicans and I had started working with the Senate Republican media center. And they had ... I still don't know what the NPS is going to be, but they're doing some sort of-

Aaron Jun: The Republicans. You're actually working with the Republican media center?

Peter Morley: No.

Aaron Jun: That would have been surprise.

Peter Morley: But clarify that.

Aaron Jun: Okay.

Peter Morley: I wouldn't be opposed to it.

Aaron Jun: Yeah, sure.

Peter Morley: I wouldn't be opposed to it.

Aaron Jun: Of course you wouldn't be.

Peter Morley: I absolutely wouldn't because I have always said healthcare is a bipartisan issue, but yes it was this Senate Democrats. I've done a couple ... I did a piece for a Senator Schumer with them and on preexisting conditions and we just did an ACA with a call mash up for open enrollment, which again I'm going to access sometime this Saturday December 15th, but they wanted to do something on my advocacy so they set up me, Dave look at my schedule and they said they were kind enough to set meetings with senators and the offices that I was meaning because I normally meet with the healthcare staffers and that's normally how it is when you go to DC.

Peter Morley: But the highlights for me was I'm fortunate if I need one legislator during a trip I met ... sorry I lost track but I believe about seven and it was a one fortuitously, so the highlight of my trip was probably meeting my healthcare Hero center, Tammy Duckworth who is disabled like myself and for someone who has disability to be mocked by our current president, for someone to rise above that, for someone to be just a hero for someone to inspires myself and millions of people, not only because of her disability but because of who she is and her strength and character and meeting her I felt like I had to really reach for my work. It was challenging for me.

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Aaron Jun: What did you end up saying to her?

Aaron Jun: You're my hero. Can I have your autograph?

Peter Morley: Pretty much. No I had to look at her and say, “Senator Duckworth I thank you so much for your advocacy and for everything you do and your strength and your character as I just said, but you are my role model and you're a role model for millions of millions of people and not people who are just disabled or who have health issues, but people who don't because it makes them see that people with disabilities are capable of being senators.” And she was in the military as well. She's also a veterans hero. She's just an amazing person. I also had a meeting with Senator elect Rosen who ran specifically on healthcare and it was wonderful to meet her because I've worked with her office for over a year now. And to meet her was so gratifying and for her to know who I am and she had a constituent who her name was Emily Favor and unfortunately Emily succumbed to her illness or cancer and passed away last month.

Peter Morley: And it was devastating and I never met her in person. But I feel like I have a good read on people and she was just an amazing incredible inspirational person. And Senator Electra Rosen, I only met her handful times as well. And she was just telling me how inspiring she was and what an impact she had on her life. It just gets back to, if you make a call to your representative, if you talk to a friend, inspire them to vote. Anything you do, does have an impact on people. It just reminds me of that over and over again. Those two meetings truly stood out for me because there were so healthcare focused in general. And it just really inspired me.

Peter Morley: Actually, I take that back because I did have a brief meeting with Senator Patty Murray of Washington and she is the minority leader for the Senate help committee, which is the Health Education Labor and Pensions Committee. Need to make a lot of these decisions on the ACA and Medicaid. And she said to me she watched my video. She appreciated my work for office when I have worked, probably one of the most with her office is I am.

She said to me, “You said one story could truly change someone.” And she said when she speaks to her constituents, she thinks of me when she tells them that and that I was not expecting her.

Aaron Jun: That kind of takes the wind out of your lungs, doesn't it? When someone specifically knows something like that about you.

Peter Morley: This is someone who I can ... I'm a dog, I watch C Span. I'm probably one of the 10 people that do. Sorry-

Aaron Jun: It's riveting.

Peter Morley: Yeah, it's riveting. But sometimes it is the cabinet riveting, but Senator Murray is ... Senator Alexander, there was Alexander Murray fixed to enhance the ACA and there was an impact on women's health issues and she wouldn't budge.

Aaron Jun: Right.

Peter Morley: And it wasn't because she didn't want to help enhance ACA, but she didn't want to see healthcare choices being taken away from women.

Aaron Jun: Right.

Peter Morley: And to me that's Herrera and that's what a senator is supposed to do. Right?

Aaron Jun: Yeah. It's been really exciting for, I think everyone or many people in the country to watch what's happened since the last time you and I spoke and we have the midterms and the Democrats take the house back, but even in the midst of all that stuff, it's not about like the blue wave or whatever. The thing that excited me the most was watching all these especially women, but women of color, all these new voices kind of rising up and specifically it seemed like so many of them were discussing healthcare and it wasn't in this embarrassed tone like we might've seen in 2010 or 12.

Aaron Jun: But it was in very emphatic, this is not ... We're not seeing any ground here. We're not giving this up. You're taking it from us and we're going to fight like hell to protect it. And I think all of the centers that you just mentioned and all the representatives that got elected as well, all of them have been so inspiring just to watch and witness. Even the ones who lost had been just such fires and courageous people.

Peter Morley: To that effect, Carolyn Bordeaux in Georgia Seven, she ran a platform on healthcare and extremely red district. And my friend Alvin was with me. Here's my personal care attendant on this trip. And he worked on her campaign because he lives in that district and I set a meeting up with him and a congressman Woodall last July and it inspired him to want to work on Carolyn Bordeaux and then-

Aaron Jun: That's so cool.

Peter Morley: It is so cool and you'd think it's so disappointing that she lost by 400 votes, but you know what? That moves the needle so much. It really does. It really says that we have come so far. One thing I definitely learned from this trip is that I am not a health care policy wong at all and I don't understand a lot and I looked up a lot of terminology, but there really needs to be a lot of healthcare education because what happens is you ... Let's go back to March of 2017 when the AHCA, the first part of the deal with PL.

Aaron Jun: With PL?

Peter Morley: Yeah. When it was voted, I don't know if it was even brought to the floor, I can't even remember now. Maybe it was voted on, I honestly don't remember. But so much has happened over time.

Aaron Jun: It's hard to keep track of all that and secure the AHCA right?

Peter Morley: No, and it changed so many times too. People are like, "Yay, it's over. We did it. It's great." And I was like, "Whoa, wait a minute." I'm like, "I've only been doing this because I started advocating in 2016 and in December.

Aaron Jun: 16 yeah.

Peter Morley: And got this for two years, my goodness. I just realized happy anniversary to me. It's almost exactly two years, it was right before Christmas of 2016. But, that's the thing, it is not over. The truth is as exhausted as we all are fighting for healthcare, the real battle is just beginning now because we got through the midterms and we were amazingly successful in having that and I depend on the people that are fighting for our democracy. And I fight for our democracy as well. And I've worked with campaigns on doing that and my own congresswoman Carolyn Maloney on that as well. But the truth is we still have a long way to go. The AHCA is far from perfect and it needs to be enhanced and that's something that should have been done to your ago, instead of spending all this needless time trying to take it apart.

Aaron Jun: Right.

Peter Morley: And they're going to be many attempts to wreck it and destroy it through regulations.

But the most important thing is I think in every state, there has to be a way that we can educate people and get people engaged into understanding their health care better.

Because here's a good example, when CHIP wasn't reauthorized since September 2017, there were a lot of parents who said, “Oh, so what?”

Aaron Jun: How could this possibly impact me?

Peter Morley: And then they find out, because CHIP is not ... I think it's only a few states that it's actually called CHIP. Like I think in Alabama county it's called All kids. I could be wrong, I've heard something like that.

Aaron Jun: Right.

Peter Morley: So they don't understand it. Or there's Medicaid, expanded Medicaid through the ACA that they're on, but it's not called Medicaid. It's called something else. So that they're like, “Oh, I don't want that Obamacare, right?”

Aaron Jun: Right.

Peter Morley: But meanwhile, the Obamacare is actually saving their lives, so there needs to be education on those types of things. And I think from my trip, I think that is probably the most powerful thing that I picked up.

Aaron Jun: If you had a magic wand and infinite money and like a super pack with all this dark money like that George Soros money, pumping into your bank account, how would you kind of go about taking the first couple of steps to doing this education? It has to be probably by state, state by state, right?

Peter Morley: Yeah. It's a tough question because every state is different. And that's the Graham-Cassidy bill that was going to be proposed to block grants. I don't want to give them any credit for the fact that it makes sense that they were the two first states to make their own decisions. But it's like when states get Medicaid money from the federal government, it's up to them to determine how they want to spend it. But the truth is every state would be different, but I would find the resources to best educate, I find the people that are the advocates within each state and have them create, literally you would need 50 individual tools because I actually met with Senator Murkowski's office for the first time on this trip.

Aaron Jun: Interesting.

Peter Morley: And they have their own set of challenges for instance. And this was very disheartening to see this is breaking news because this stuff I haven't shared with anyone and it's not surprising. I'm sure when I mentioned this, but there are people like, let's say I have lupus and I need a monthly infusion. Let's say I lived in a rural like people who live around Anchorage in Alaska and ... First of all I have to give Senator Murkowski credit because she did not only for the AHCA, but for this recent earthquake, she did an outstanding, amazing job in just responsiveness of the emergency fund recently.

Aaron Jun: Recently.

Peter Morley: It's just incredible.

Aaron Jun: Incredible.

Peter Morley: And I'm so sorry it was so diluted in the news. She really deserves a tremendous amount of credit. By the way, we saw Bill Gates walk into her office.

Aaron Jun: No way.

Peter Morley: Yes. Yes we did. And I don't want to talk about Bill Gates and dark money in like averse, so I don't know what he was doing there, but-

Aaron Jun: Well he does a lot of stuff.

Peter Morley: Yeah, it was just strange. But I'm the last person I would have expected to see there, especially going into her office. But anyway, I digress. But what I was ... Let's get back to, let's say I lived-

Aaron Jun: Yeah the challenges.

Peter Morley: Let's say I lived in a rural part of Alaska and I have benlysta infusion that I take for lupus, the only drug approved in 50 years by the FDA specifically treated for lupus. Lupus is one of those diseases that they don't have any drugs. People say, “We the Lupus community depends on the secondary effects from drugs that are meant for other things.” For instance, I take Beta blocker that's meant for something else because it helps me with my something called Raynaud's, which-

Aaron Jun: I actually have that.

Peter Morley: You have Raynaud's?

Aaron Jun: Yeah, like super cold strangeness.

Peter Morley: When I shook your hand today...

Aaron Jun: I hadn't had time to warm up.

Peter Morley: Like with you I absorb the cold, I sleep with socks on. So. Wow. Well I didn't know that. Something we have in common, Aaron!

Aaron Jun: Yeah the one thing...

Peter Morley: The one thing. So I can say you can empathize with me. But let's just say anyway, I take Medication for that which helps open up the artery. It doesn't do the perfect job but it helps a little bit.

Aaron Jun: It's good enough.

Peter Morley: It's good enough exactly. So let's say I lived in a rural area in Alaska. There'd be a plane once a week that I would have to make to travel to Anchorage to get my infusion because there aren't enough doctors in those rural areas, they don't have enough doctors.

Aaron Jun: Oh my gosh yeah!

Peter Morley: And not only that, in some instances I wouldn't be allowed to bring my caregiver with me and I can tell you through my surgeries, through my infusion, there's a lot of other things that I've been through. Even doctor appointment, simple doctor appointments. I can't imagine not having a caregiver with me.

Aaron Jun: Right.

Peter Morley: So when you say about the unlimited sources, there are all these considerations each state is so different and that's why Medicaid is different in every state and we spend so much time and energy preventing healthcare from being sabotaged that we use up all of our resources doing that instead of trying to figure out ways to do what you're talking about.

Aaron Jun: Right. Playing defense Instead of offense that's weak yeah.

Peter Morley: We actually have the resources because they're wonderful, tremendous advocates that you don't hear about.

Aaron Jun: Of course.

Peter Morley: And they're not on Twitter and they're on the ground and they're working hard every single day, seven days a week, sometimes 365 days a year, 24 out of seven. I always feel like I can never do enough.

Aaron Jun: Well, first of all, you do so much so.

Peter Morley: Well, I appreciate that.

Aaron Jun: I think you're probably-

Peter Morley: You're not going to change my mind no.

Aaron Jun: I think you've earned like a burger or whatever your favorite food is and a milkshake or something.

Peter Morley: Milkshake something.

Aaron Jun: Yeah, milkshake always sounds good. But you talk about all this stuff that needs to get done state by state, everything's so different, healthcare regulations and legislation obviously so complex. I was reading through some Tweets by our mutual, I think friend and advocate, Matt Cortland. And he was talking about why Medicare for all is a bit flawed if you don't do the work of like going through the weeds of what Medicare actually would be if it was rolled out entirely.

Peter Morley: Right.

Aaron Jun: So we have this world now where the Democrats control the house, the Republicans keep the side. The presidency is in the Republican hands. So, at the very least we know that healthcare isn't going to get like Trump act, right? The ACA won't get completely ... at a very simple level.

Peter Morley: Well, you know-

Aaron Jun: Oh No.

Peter Morley: No, this isn't bad news. No. This goes back to the education because that's a great point. But I don't mean to be the voice of doom because I always wanted to be positive. But the thing is it's not even the voice of doom. It's that we need that education because there are regulations that come out through executive orders through-

Aaron Jun: Right. Like the junk insurance plans.

Peter Morley: Right. Like the junk insurance plans where we got like 9,000 people to comment. But its just unheard of for healthcare.

Aaron Jun: Right.

Peter Morley: Neutrality has much more than that. But for healthcare to have almost like 10000 comments, that's grassroots.

Aaron Jun: Right.

Peter Morley: And we have to educate people on how to do that in what we learned from the short term plan comments is that we need them to be effective or more effective, more needy. The great thing about the comments period, because they really try to hide that.

Aaron Jun: Right.

Peter Morley: The comments period, it's a paper trail. So they can always go back there. Something goes wrong with this short term plans. There are enough comments-

Aaron Jun: Telling them what's about to go wrong?

Peter Morley: Exactly. So they're going to be held accountable. They're going to be held accountable whether it's through elections, whether it's through legislation, they're going to be held accountable. So even if the comments are changed the rules from going into effect, there are those comments there that they can always have that paper trail from.

Aaron Jun: Right.

Peter Morley: So it's so crucial to get people educated on how to respond to those comments.

Aaron Jun: Right.

Peter Morley: So that's one way to do it. But to your point, and I'm sorry, were you going to ask me a question?

Aaron Jun: Yeah the question was going to be ... No it's fine. It's actually kind of along those lines. We know that the giant high level dismantling of the ACA, it has a very small chance of happening now compared to before, but we also know that there's plenty of fighting that's left to be done. And that there are continual fights, like you said. All this regulation might come down and we need to have people educated and then activated guests and taking action.

Peter Morley: Right.

Aaron Jun: So I guess my question was going to be in the wake of this midterm election with two years till 2020, but a lot of time, two years is a lot of time. You just said a little while ago, “I can't believe it's been two years spent like 25 probably.”

Peter Morley: Feels like more like 105 or so.

Aaron Jun: And we're all trapped in this little time bubble of no time progresses but too much time progresses all at once.

Peter Morley: It does.

Aaron Jun: Anyway, so two years till another big election, but continual fights that need to happen.

Peter Morley: We actually need to correct it. It's 23 months.

Aaron Jun: 2 months, that's right. So fewer than two year?

Peter Morley: Yes sorry.

Aaron Jun: But each of those weeks of each of those months we have to do stuff, right?

Peter Morley: Absolutely.

Aaron Jun: So the way you see the world, what do you think is the big healthcare debate or fight or discussion that needs to be happening now? Is it about, like you were saying earlier off mike, like the ACA, you were saying something about like a highway and if it's exit five and-

Peter Morley: Well I have said this in so many offices now. The years are probably bleeding but they appreciate it. Schumer's office has used this in other meetings which I appreciate. So anyone listening, imagine whatever state you're in, you have these like short highways that only have five exits, whether it's a freeway or highway, parkway at turn five whatever i is.

Aaron Jun: A byway.

Peter Morley: A byway.

Aaron Jun: I don't know if that's a thing, expressway.

Peter Morley: No there's byways right there. So if exit five is the ACA, the Affordable Care Act and exit one is universal healthcare, we need to figure out what is four? What is exit three? What is exit, excuse me, exit two and how do we get to exit one?

Aaron Jun: Right.

Peter Morley: There is no express lane to get in to exit one because that would be the equivalent of repute. So that is not an option. Now for me, my advocacy going to DC was always, as a Hillary Clinton ran on her campaign, was to fix and enhance the ACA and we talked about this last time too, I believe. The ACA is far from perfect and we all agree on that and that's why we need to fix it and I don't even like to use the word fix. Enhance. Enhance, right? I have stories. There are thousands, hundred thousands, maybe even millions of stories where we've heard ACA has saved lives.

Aaron Jun: Right.

Peter Morley: So that is a great thing. The uninsured rate dropped dramatically from the time that healthcare.gov was instituted to the current year, I don't believe the figures have come out for 2017 yet, but the uninsured rate has dropped dramatically. That is good thing with quality insurance. Insurance that you may have to pay a lot out of pocket, which is not a good thing. And that's one of the fixes that need to happen and everyone's aware of that. The other thing, the other big ticket item that needs to happen immediately are drug prices and that is such a huge concern and I can tell you I had 22 meetings over two days and I heard that from every single office.

Peter Morley: And I did have three GOP meetings and I heard them in those offices and every democratic office. So it is on top of mind of every office. I think we need to start there. We definitely need to get the states, there are 14 states left that do not have expanded Medicare including Texas. Are you listening, Senator Cruz and Senator Cornyn. Actually, my first meeting of the day was with Senator Cornyn's.

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Aaron Jun: Oh really?

Peter Morley: It was.

Aaron Jun: I was just going to say, there's almost no way they're listening, but maybe they are.

Peter Morley: They might be, Patrick if you're listening. You're a very nice guy by the way. And thank you for taking my meeting. I have to say Cornyn's office has been very gracious. Very gracious to me. There are offices like Senator Cruz and Senator Rubio. I've had one meeting with Senator Cruz's office. There are offices that will not even respond, which is, here's the word, we haven't heard while deplorable. But it is because I'm representing their constituents, the other-

Aaron Jun: Because you carry like literally half stories-

Peter Morley: I do.

Aaron Jun: Of people in every one of these constituencies and-

Peter Morley: Absolutely.

Aaron Jun: So you're not just showing up as a New Yorker saying, "Hey, eat a Bagel and expand my share."

Peter Morley: The thing is there are states that will actually meet with me without stories too, that will meet with me to discuss healthcare if they have the time which is wonderful because I think at this point, I know someone in every single state. I think every single state has reached out to me. I have a lot of people that I know in West Virginia and Ohio, Pennsylvania, California, New York, Texas, probably the most in Texas and Florida and-

Aaron Jun: Or the least insured state in the union, right? Texas.

Peter Morley: Yes. It's devastating, it really is. But I don't want to say too much on my meeting with Senator Cornyn I'd like to see what happens in the next month. But I have to say that the meeting that I had gave me some help. Here's the thing, medicaid expansion has been shown on the Kaiser Family Foundation, which is my go to and probably most people's go to for healthcare resources because they have incredible data and accessible data. They don't charge you for the data. It's like my advocacy, it's like out there, use it, do whatever you want. It only advertises them. Great. Wonderful. And it's great data.

Peter Morley: So what we need to do is we need to get those boots on the ground in those 14 states including Tennessee, Alabama, Texas. Alabama alone could so benefit for Medicaid expansion, with eight hospital closures in a year and both Senator Jones and Senator Shelby are deeply concerned about. So that's where something like Medicaid expansion and we just saw it happen in three states over the election. And Idaho for instance, is a very red state and it has medicaid expansion, which is wonderful. But then you have a state like Maine where the governor says he'd rather go to jail, then expand medicaid. Well it's the court overrode him.

Aaron Jun: Well it's an interesting position.

Peter Morley: I guess he'll be eating a lot of bread and water. I don't know.

Aaron Jun: So it all goes back to the thing you were saying about the individual, like state concerns that need to be kind of addressed.

Peter Morley: It's the wonderful New York.

Aaron Jun: This is setting the scene. So we are literally on Broadway right?

Peter Morley: Yeah, we are in the heart of the bubble.

Aaron Jun: But it goes back to that thing you were saying and you.

Peter Morley: And that is health care. Those are aimed [crosstalk]

Aaron Jun: Yeah, that's right. Well, and here you have all this access to amazing hospitals.

Peter Morley: But we had hospital closures too.

Aaron Jun: Right.

Peter Morley: I mean we have Saint Vincent's, which during the 80s was a huge, that was one of the first hospitals in the country that opened its doors to HIV/AIDS patients. And they also were, the hospital were nine 11 victims we're taken there. So-

Aaron Jun: I didn't realize they're closed.

Peter Morley: Yeah.

Aaron Jun: When did they close?

Peter Morley: They closed, I'm tempted to say five or six years ago.

Aaron Jun: It's super recent.

Peter Morley: And they turned it into a condo. Now, why anyone would want to live in a condo that used to be a hospital?

Aaron Jun: It's like building a house on native American burial ground. It's in every horror movie.

Peter Morley: You know what they got in exchange? They got a lovely AIDS memorial across the street. That's a park, it sounds like a great compliment.

Aaron Jun: Even in New York that stuff happens. Like you were saying in Alaska, there are some places where you need to take a plane without your caretaker, to get the one medication that works for you.

Peter Morley: Absolutely.

Aaron Jun: Alabama. I imagine like I drove through some rural parts of Alabama before and there's like nothing for a long, long stretches, like not even seemingly home. So if there are eight hospital closures, like that's a huge impact.

Peter Morley: Well it is because you know what's going to happen and I need to scroll the salary, it's pretty obvious is that it's going to result to more doubts because an urgent care center can't replace a hospital. If you go into an ambulance, you'll probably die on the way to the hospital. And especially when you have something like a stroke, time is the essence and the quicker you get treated is going to be the outcome that you have for the rest of your life.

Peter Morley: I was privy to some Senator Murkowski on the Senate help committee and since Senator Baldwin, and she was talking about, I heard this from Senator Murkowski's office, Senator Baldwin was saying that one of her constituents had to travel, one and a half hours each way. And then Senator Murkowski said, "Oh, well." That's how we got into the story. But I do know people like in Idaho, I know someone who lives in very rural Idaho who does drive for her semi annual infusions. She drives six hours round trip. These are the things that people do, in Sun Valley that's where she lives. That's-

Aaron Jun: That's reality. There are so many people.

Peter Morley: It is, and you can't just say to somebody, well, if it's such a problem, we'll move. Well, you don't have the resources...

Aaron Jun: It's not that simple.

Peter Morley: You just don't have the money. If you live in Texas and you say, "Okay, we'll move to New York or move to Washington or whatever." First of all, if your spouse or significant other, if you live with them, if know their job, there are so many factors. So that's not the answer. The answer is, what can we do? There's a lot of trying to be innovative like with like telehealth and still to me that isn't the best solution. It's a solution. Maybe if you have, the flu or cold or something that you can be diagnosed and at least you have a pharmacy nearby and sometimes even your pharmacy may not have the meds that you need either. And that's another consideration. But-

Aaron Jun: Or the meds are just too expensive.

Peter Morley: Or the meds are too expensive. But that's what we're up against. And we really need that medicaid expansion would just help so much. And again, the Kaiser Family Foundation has said that in every state the Medicaid was expanded. It has been financially beneficial for the state. So why Texas is not expanding Medicaid is beyond me because they can only stand to benefit. Not only would more people be insured, only people have better quality, affordable coverage, the state would benefit too.

Aaron Jun: Of course, more able bodied people, healthier people, more tax revenue I imagine. But without going into all that stuff.

Peter Morley: It's good to say that, it's people need to know.

Aaron Jun: When I was outside of this whole healthcare thing, I only really became involved when I started working at Clara and we work in health care. But I always thought, especially when I was younger, I just kind of assumed there was a reason that everything was structured this way because when I thought about it, it just made no sense to me, that we're just letting people die without care, without adequate care, without accessible care. So in my mind I kept thinking, well, surely there's a reason to argument for this.

Aaron Jun: And it still seems like today that there is this weird mentality, maybe I think it's gotten a lot better, but it seems there's still this mentality that for some reason chronically ill people or just sick people in general are like considered like a drain almost or like it's their fault, and we end this societal structure seems to treat people who get sick like, "Oh well you should have worked harder." Or "You don't have insurance, that's your fault." Right? When in fact everything is structured against patients just in general. I guess that's a really long winded way of saying, I think there is a huge amount of will within the country basically to expand health care access to make it more accessible and equitable across the board from state to state. And now in the mainstream we have conversations about medicare for all or universal health care in general.

Aaron Jun: So how do we make sure that patients are involved in the drafting of this stuff, so that we don't fall into a situation again where like "Okay, great medicare for all, let's just expand it." And to me as a healthy person, relatively healthy person, I just assume, "Oh okay, yeah sure that sounds great. Universal health care." But in fact if it's just people we had a table going, "Okay that sounds great, let's propose it and vote on it. Super Popular Right now because it's super catchy." We're going to miss a lot of very obvious blind spots, blind spots that are obvious to patients everywhere. So how do we make sure that more people are involved? I guess long winded question.

Peter Morley: I'm glad you brought that up. As I always say on twitter, make your voice heard. It's that simple. Call Your Senators, call your house representative and tell them that's all it is. And they will listen to you, they will make an appointment. They will take your input, they want your input because you are their constituent. The thing is, I live in a blue state where I have two blue Senators and I have a blue Congresswoman, and my voice still matters because they're, like you said, there is new legislation, And also, I have state senator (each state is different) and I also have an assembly person. I can speak to them and I have a city council member. You could go that local, but if you do nothing then your voice won't count.

Peter Morley:

You have to speak out and if you already do speak out, you have to encourage other people to speak out. That's your only way that we're going to be involved with this process.

In those 13 trips that I've made in the deepest Republican offices I've been in, I've never had them discourage their constituents from being involved from calling them, from speaking with them. I've never witnessed it. I've seen a little, maybe one or two cases I could point to, where the senators wanted to set appointments with their constituents. But you have to make your voice heard. And I know it's not easy for everyone. I know and I'm telling you it wasn't easy for me. Making that call is as simple as, “My name is Peter Morley and I want Senator Schumer to enhance the ACA.” And that's it.

Aaron Jun: Right.

Peter Morley: And then they say, "What's your Zip Code?" And I tell them and then I hang up. It's really just, your call that you make, I would discourage you from you save the speech for when you're actually at the appointment, because the person that's transferring this phone is most likely most of the time an intern but they'll take the message and your voice and even making that call will make a difference. And that's, to some degree that's input right there. If something is really important to you, if there's something that is glaringly missing, like whatever legislation is happening, whether it's an ACA fix or if it's something more than that that we're going to hear about.

Peter Morley: They can always make an amendment in that, in the policy. So if you say nothing, nothing will happen. So you have to say something. And have to find it somewhere deep within you and put your health care first and do it. I encourage you, it doesn't mean you have to go to Washington 13 times. You don't have to go through 48 hours, especially, I would discourage you doing that, by the way. I discourage myself from doing it, but I just can't. I always feel-

Aaron Jun: You can't stay away?

Peter Morley: No I just ... The truth of the matter is that, I have progressing illness and I never know when it's going to be the last time, I'm going to be able to make a trip to DC. I always treat the trip to DC like it's my last trip. I want to go out with a bang. I could say If this was my last trip, was even my last trip I can't say, and you can play this back for me in case something else different happens, but it's my last trip with the 115th Congress. But I made 13 trips with 115 Congress, that was not what I set out to do. I set out to beg and plead Congress to not repeal the ACA. And yes, that didn't happen but the onslaught of sabotage, the unslaught of trying to repeal and undermine what is the law of the land called the affordable care act is up to you, is up to us.

Peter Morley: And if you look the other way, it's not going to make it go away. Senator Casey, the Democratic Senator of Pennsylvania. He said to me something that so rung true with me, and it's the reason that I never called the affordable care act Obamacare, because of the little sizes though. And he said that, and he is actually the first senator and legislator I've heard say that. And I almost wanted to applaud like, "Thank you, thank you because I totally agree, I'm sure that President Obama appreciates that, and I hear Obama care from more republican offices." But the truth of the matter is, as I spoke to Nancy Pelosi health policy person yesterday. She told me that ACA is the law of the land and that's ... you have to think of it as that's a foundation. Okay?

casey

Aaron Jun: We have a foundation.

Peter Morley: And by no means it's not perfect, but by no means do we have to break it up and build new foundation, so we take that foundation. And the truth is we can make it whatever we want to make it, but if we become divisive and we have our own thoughts because everybody has their own ideas. We need to find a way and this goes for Democrats, Republicans and everyone in between or outside of that. We all need to find a way to work together and that is my objective with 116th congress. We all need to work together because the legislation will never get done, if we do not work together.

Aaron Jun: Right.

Peter Morley: There will be compromises that will be made because we have to consider everyone involved.

Aaron Jun: True.

Peter Morley: But it has to be better than what we have now because there are people suffering.

Aaron Jun: True.

Peter Morley: There are people who don't have that access to medication, that don't have that access to doctors or specialists from their chronic illnesses.

Aaron Jun: Right.

Peter Morley: Or mental illness or whatever they're suffering from, and that's what I as patient advocate, try to do. And I am a conduit. And I'm also probably what Andy Slavitt calls me a health care watchdog and that's pretty appropriate, so I am a patients' advocate probably.

Aaron Jun: I like the term watchdog though because when you're saying all this stuff about like we have to work together, I think there is a tendency for some like if you're not arguing in good faith to say, oh, we'll work together and to me better means cheap or to me better means unregulated healthcare or non government health care, right?

Peter Morley: Yeah.

Aaron Jun: So it seems to me that everyone has to work together because this is something that everyone requires, but like you're saying like a watchdog. There are components that are nonnegotiable, right?

Peter Morley: Yeah

Aaron Jun: And if someone tries to come for that piece of it, then you as a conduit and watchdog are activated and you say, "Not on my watch." Right?

Peter Morley: Absolutely. I mean here's one position that is universal and it's called preexisting conditions. That is something that a Republican and Democrat will completely agree upon, but before the affordable care act, insurance companies could discriminate against you if you had a preexisting condition.

Aaron Jun: So insane.

Peter Morley: It is insane and there's a lawsuit right now, that hasn't been a ruling on. It's Texas versus US and there are 18 Attorney Generals and two governors and from what I understand that you will probably hear something after the open enrollment ends on Saturday and who knows how they're going to rule.

Aaron Jun: And they're trying to take away that protection.

Peter Morley: What they're trying to do is they're trying to declare the ACA unconstitutional.

Aaron Jun: Right.

Peter Morley: And you could call it frivolous, you call whatever, but they're trying to take it away.

Aaron Jun: Right.

Peter Morley: In sense, they're finding a way to repeal it without the legislation, through the judicial system. And it's just another way other than an executive order to try to dismantle the ACA. So, preexisting conditions, there's actually a bill now that Tom tell us of North Carolina introduced for preexisting conditions and a Joni Ernst who's the senator, she's senator for Iowa. And I met with them in September and we were talking about the bill and they got a lot of help from the American Diabetes Association, American Cancer Association. But my question to them was, “Why do we need to bill, When we already have protections for preexisting conditions?” And yes, it's a rhetorical question, but because of the lawsuit et cetera, we want to show our constituents that we have something in place. There we go. But preexisting conditions is something that's nonnegotiable.

Aaron Jun: Yes

Peter Morley: Absolutely, we can't go back.

Aaron Jun: Right.

Peter Morley: We can't go back that you are literally one illness away from being chronically ill.

Aaron Jun: Well, there is a lot to do and I'm glad people like you, are out there being a watchdog and a conduit and an advocate. Right?

Peter Morley: Thank you.

Aaron Jun: I know for a fact that, you have made a giant frigging impact on not just the way the midterms went because you're out there fighting for every bit of healthcare for two years or 150 years or whatever it was.

Peter Morley: Yeah.

Aaron Jun: But the work you're continuing to do. I have one last question I guess. And we talked about a lot of stuff. Some of it frankly, a little depressing, right? And some of it a little more-

Peter Morley: Try to be a little positive.

Aaron Jun: The facts are the facts.

Peter Morley: Right.

Aaron Jun: You can't just rewrite history and say like, “Oh everything's fine and we all get along and we all agree healthcare is.” I do want to, as we're running into the holidays, we have Hanukkah, we got Christmas coming up, we have the new year coming up 2019, a new congress, a more diverse congress, your 14th trip, whenever that is hopefully not anytime soon.

Peter Morley: It's actually January 10th.

Aaron Jun: Jesus! You're a workaholic, you know that right? You're a workaholic.

Peter Morley: Before I was disabled, I was literally in my office from seven to seven.

Aaron Jun: You're the type, you're like the prototypical New Yorker, just like grinding on every possible side of things. For as long as you possibly can.

Peter Morley:

It's built in me, I'm a fighter as in my nature.

Aaron Jun: So January 10th but 23 months, a lot of stuff to do, what are you most excited about I guess? It can be a personal thing. Or it could be anything, but in terms of the fight, in terms of your personal life, in terms of anything, what is getting you excited about the turning up the clock and going into 2019.

Peter Morley: I wasn't expecting that question.

Aaron Jun: I know.

Peter Morley: What am I most excited about? I am excited about the prospect of the opportunity to find that commonality with Republican counterparts in the senate and it's going to be interesting trying to figure out since the senate has changed a little bit, in finding out who are going to be our allies and trying to do a little bit of detective work. And I'm looking forward to seeing what this new house puts out there, and are they going to go really progressive? Are they going to go more centrist? I'm just very curious and but I'm excited too because I think it has the opportunity to make some, to really learn the lessons of what worked and didn't work for healthcare. I'm very excited to see. I feel very hopeful and very positive and I do because there again, as I said earlier, there are so many wonderful people out there that are just doing, just amazing things that we just don't share about all the time and I give them so much credit and so much thanks.

Peter Morley: I'm a person who again has every temporary exact negotiation for a survived cancer and chronic pain and spinal issues and nerve damage now apparently. But the thing is-

Aaron Jun: Quite a resume.

Peter Morley: It is. But I'm in New York, so I have to be tough. But thing is, I like a challenge.

Aaron Jun: Yeah.

Peter Morley: So I like doing that detective work and I feel good things are coming. Once we get past this lawsuit, once we get past a lot of the uncertainty. Living in uncertainty and speaking as a patient, living in uncertainty can be maddening and you have to find ways to live sometimes, a day at a time, sometimes an hour at a time, sometimes a minute at a time and literally sometimes a second at a time.

Peter Morley: And I think that's what we all need to do. I think if somebody is for something in legislation, we don't need to jump down their throat. We need to hear them out and see how we can make things work or if we think it's trash, then we need to come up with the better solutions and more meaningful solution and not compromising on any like basic human rights. Because we have the opportunity now to make things right. To make things that work for somebody living in New York city, somebody living in any home, somebody living in rural community in Alaska. We're all Americans and we all deserve healthcare and healthcare is a human right and we have the opportunity now to enhance what we have and that makes me very excited.

Aaron Jun: I love it. Well, thanks so much. I know you have a lot of recovering to do after trip 13 and trip 14.

Peter Morley: Yes I do and after this podcast.

Aaron Jun: Yes, after this podcast.

Peter Morley: Yes.

Aaron Jun: So, I really appreciate you making the time and it's fantastic meeting you in person.

Peter Morley: Thank you for meeting me too. Thank you for everything you're doing. I'm honored that you want to spend this time with me.

Aaron Jun: All this was a refreshing breath of fresh air. Thanks a lot and we catch up on trip 14 hopefully.

Peter Morley: Any time.

Aaron Jun: All right.