Patient Advocacy on Capitol Hill

Melissa Tower (6s):
Living with a chronic illness for so long, I had forgotten that I had any power. I felt so defeated in this healthcare system. When you're talking about changing policy, or even raising a voice and sharing with people, I didn't realize that I could actually do that. So when you talk to representatives, you do feel heard.

Terry Wilcox (29s):
Today, how to use your voice to create change in the healthcare system. Learn how you can take your story to Capitol Hill and advocate for the chronic illness community. That's up next. Welcome to the Patients Rising Podcast. I'm Terry Wilcox, Executive Director of Patients Rising, a group that advocates on behalf of the 133 million Americans who live with a chronic illness. I'm joined by my cohost, the guy who needed prior-authorization from his PBM before having four cups of wine at his Seder. I love it when I don't read the joke, because it makes it funny, Dr. Bob Goldberg, Co-Founder of The Center for Medicine in the Public Interest.

Terry Wilcox (1m 10s):
Passover Is coming to a close, but since I wasn't on last week, I wanted to wish you a very happy Passover, Bob!

Dr. Bob Goldberg (1m 17s):
Thank you very much, Terry. Khag Sameakh to you. Happy Easter to our non-Jewish friends and Ramadan Mubarak to our Muslim friends. Notice how bilingual or trilingual...

Terry Wilcox (1m 30s):
You are! We went all over the place for on vacation. We were in California with our Jewish family, and then we went all the way to Coalmont, Pennsylvania with our Catholic family. So it was all in there.

Dr. Bob Goldberg (1m 43s):
By the way, I am offering extra boxes of matzah, that I got for free at the grocery store, to anybody that wants it. I will pay shipping costs. We have so much matzah here, Terry, that I could shingle the roof again.

Terry Wilcox (1m 59s):
Well, I put matzah in the boy's lunch today, because I just figured they needed a break.

Dr. Bob Goldberg (2m 4s):
Yeah, yeah. Well, nothing like a nice dry piece of matzah to brighten the lunchtime of a primary school kid.

Terry Wilcox (2m 15s):
Exactly. That's not all they got.

Dr. Bob Goldberg (2m 16s):
All right, they got something else, I'm sure. Anyways, Terry, Congress returns to DC next week - Yay! They'll be dealing with a number of healthcare proposals, and of course, we will be discussing those that affect the chronic disease community on our show.

Terry Wilcox (2m 31s):
When it comes to policy-making, we believe patients and caregivers deserve a seat at the table. To understand the issues and challenges in the healthcare system, and what solutions are needed, lawmakers need to hear from those who live with these issues day-in and day-out.

Dr. Bob Goldberg (2m 47s):
That's why we are talking about a new opportunity that we have for you to get involved and tell your story directly to your members of Congress.

Terry Wilcox (2m 56s):
That's right. Here at Patients Rising, we are gearing up for our 2022 fly-in. This year we're calling it Patient Uprising. On June 14th and 15th, patients and caregivers from the Patients Rising community, will head to Capitol Hill to share their healthcare stories, discuss the challenges they face and advocate for policies to improve healthcare, access, transparency and affordability.

Dr. Bob Goldberg (3m 22s):
Melissa Tower joins us on today's episode. She's an experienced advocate for the fibromyalgia community who takes us along on her advocacy journey. She shares what's on the agenda for this year's fly-in and explains how you can become an advocate for the issues that impact you.

Terry Wilcox (3m 40s):
We'll also explain how you can join us for those two days here in DC. We have more on this and the latest updates in the health policy space up shortly, but first this week's healthcare news headlines

Robert Johnson (3m 55s):
In your Health News. Hepatitis is showing-up in young children in North Carolina and Alabama. The two children in North Carolina recovered, but in two cases in Alabama, the patients required liver transplants. Investigators think the problem may be a cold virus that's causing liver inflammation. The childhood vaccination rate dipped slightly last year. The rate for kids entering kindergarten dropped almost two percent. That means about 35,000 kids started classes without protection against common diseases. Delayed doctor visits, because of the pandemic, are considered the reason for the decline. Tech billionaire, Patrick Collison, founded the payment service called Stripe.

Robert Johnson (4m 35s):
Now he wants government science agencies to work faster and be more efficient. He's making the case with a new nonprofit announced this week. The Good Science Project wants agencies like the NIH, and the National Science Foundation, to be bold in their work rather than taking baby-steps in their pursuit of new discoveries. Finally today, the Biden Administration has appealed a federal court ruling tossing the mask mandate for people using public transportation. The CDC continues to believe that masks help prevent COVID-19 spread. The agency wants older people, and those with underlying conditions, to keep masks on when traveling on planes, buses and trains. That's your Health News update for this week, I'm Robert Johnson.

Terry Wilcox (5m 25s):
Now let's start with some of the health stories we're following right now. It's a little quiet, obviously, because Congress isn't here. First up, a new study from JAMA shows some really alarming hospital markups on cancer drugs. The highest markup was on a prostate cancer drug, which had a median markup of 634% - Crazy! Now we've talked about this on the show before. I talked about looking at hospital bills, and you can see a drug that you know the list price. The drug we're talking about, is the supportive care drug, so it is a cancer drug. It's a supportive care cancer drug that I'm talking about, Bob.

Terry Wilcox (6m 5s):
It was marked-up in a Florida hospital 500%. The list price of this drug supportive care drug was, at the time that we saw this bill, roughly around $5,000 and it was marked up to $27,000. I mean, what's $20 grand among friends, right? Then they had the audacity to mark it up to $37,000 in the next bill, as if you know...

Dr. Bob Goldberg (6m 33s):
Well, things change!

Terry Wilcox (6m 34s):
Things change, I guess.

Dr. Bob Goldberg (6m 35s):
Interesting to see how many people pick up on this story. Names will not be mentioned, especially those people who lead patient groups that are cancer survivors and say, something's got to be done about these markups and these spreads, as opposed to blaming it on the pharmaceutical companies.

Terry Wilcox (6m 57s):
Look, I am not, as anyone who knows me knows, against a markup to do something, because a twenty- percent markup, ten-percent, whatever it needs to be. It needs to be, to cover the cost of delivering the drug, but this is egregious and nobody ever talks about it.

Dr. Bob Goldberg (7m 16s):
Wait a minute, I'm just trying to get my mind around another thing, Terry. So they marked it up the next time around to $37,000, right?

Terry Wilcox (7m 28s):
Right, and this poor woman was doing a go-fund me for $465,000 to pay the hospital. It's my opinion that you get into bankruptcy situations mostly, and I'm not saying all - I'm sure there are some people who show-up at the pharmacy counter, they need the drug, and they max-out credit cards to get it paid. I'm not saying that doesn't happen. Then they find themselves in a tenuous situation, because of that. However, I think a majority of it is stuff like this. The hospital marks-up, in a crazy way, and then starts to come after them. They get this bill on the other side - We're working with a woman now, that I think I've talked about on the show, who was in this weird period. She got a mammogram, they were saying it was being covered. It was being covered.

Terry Wilcox (8m 8s):
It was being covered and all of a sudden, "Oh, oops, you were one day late of when the policy actually took effect for you." I just think this kind of stuff, is the stuff, that is hurting Americans the most. We're talking about the list-price of medicines that most people don't pay if they have any coverage. This is where people going bankrupt, people having to sell their homes, it's getting a $465,000 bill from a hospital that does that.

Dr. Bob Goldberg (8m 40s):
Yeah, yeah.

Terry Wilcox (8m 41s):
It's not showing up at the pharmacy counter and having to pay full-price for Humira, or whatever - fill in blank drug, which would be ridiculous if you did show-up at the pharmacy counter and have to pay full-price for anything. Do you agree with me?

Dr. Bob Goldberg (8m 56s):
No, I totally disagree. I think that people should be forced into bankruptcy by their hospitals, because it's the right thing to do. Again, it's alarming and the policy response is so beside-the-point and so hypocritical when it comes to Congress. Some of that markup does go to the insurance companies in some cases, because it's paid for, in theory, by the patient. Right? That's something else I would love to see more transparency on. Who's getting that cut of that spread and how much?

Terry Wilcox (9m 36s):
The other thing that happened this week is, I was published in The American Journal of Managed Care.

Dr. Bob Goldberg (9m 42s):
Oh yes - I saw that!

Terry Wilcox (9m 44s):
On the No Pain Act, which is something that I've worked on quite-a-bit behind the scenes, and I'm very passionate about it, is opioid alternatives. It's not that I'm not an anti-opioid for the patients who-need-it person, but I do think that if we're going to move forward in the pain-space, there needs to be reasonable coverage for the newer alternatives. Obviously they're more expensive than Oxy, but we need to move in a direction of supporting that innovation in that space. So, I am very pro branching out and covering some of the alternatives, in a more meaningful way, so that more doctors are willing to do it, because their patients are going to be able to afford it.

Dr. Bob Goldberg (10m 30s):
Right. Right. It won't drive them into taking fentanyl and other kinds of things, because the other medications aren't doing their job or aren't targeted to their particular condition or set of receptors. So...

Terry Wilcox (10m 43s):
Well, right. I think there's all kinds of bad things that come from over-prescribing of opioids in any direction. I can definitely speak to that in my own family, from my grandparents, who wouldn't even take theirs, but other people in the family did. So there's a variety of reasons for these things, and why I'm so pro, like let's innovate in that space. We really need it. A lot of people are in pain. The pain is not going to go away. It's part of chronic illness. So that's my two-cents and that's why I wrote that piece.

Dr. Bob Goldberg (11m 12s):
Well, congratulations. Reflecting on all this news, the good and the bad, it reminds us of why we need to pound on those doors in Congress virtually, and hopefully increasingly in-person, to make ourselves heard. So much happening behind those doors that affects chronic disease patients and their wallets. One of the main missions of Patients Rising is to help people advocate for themselves and I was thinking we should share our own personal advocacy stories and how we got involved, Terry. So why don't you start us off.

Terry Wilcox (11m 47s):
Well, it's interesting. How I got involved in advocacy was initially I was working on a project. I was a segment producer in Los Angeles, at the time, and I had just branched-out from working at a video game company, which I think I've talked about. I was thirty, early thirties, and I was like I don't look like I should be producing video game content. I moved over and did a project called Understanding Cancer and I toured the country in a really rural, poor part of the country - Arkansas, Mississippi, Tennessee. I mean, we were in trailer parks, Bob. It was really eye-opening and the patients were fantastic. I learned so much, and these were all cancer patients, but I learned an incredible amount about the cancer journey and all the hiccups and all the issues.

Terry Wilcox (12m 35s):
Even then, I didn't call it benefit design at the time, but now I know what it was. That all of the access-barriers, and all of the things that would keep them from getting something covered, or have it be able to get a certain type of care, and that's what led me to it. Those patient stories - it was the patients. As I spent time with the patients, I always only wanted to spend more time with patients. I also, on the flip-side of that, spent an enormous amount of time talking to doctors, oncologists, specifically who were specialists in areas, and interviewing them all over the county, all over the world, actually, about their research, with my mentor, Selma Schimmel.

Terry Wilcox (13m 17s):
I got this really broad experience in the advocacy space, where I was sort of a backseat player in the scenario, but it really developed a passion for me. Then when I came to DC, I started the whole policy. I never wanted to stop doing policy, once I started doing policy, I knew policy was where you could make change happen. It was tedious, it was long, it was frustrating and there were all kinds of things to it, but I knew that policy was where you were going to make patient's lives better. That's what drove me. What about you, Bob?

Dr. Bob Goldberg (13m 52s):
Well, pretty much the same trajectory. I've been doing healthcare policy work for pretty much 30-years, and more often, than not, I would get a call, or an email, from a friend or a friend-of-a-friend, about the lack of access to a new drug needing to get compassionate-use indications. These are, by the way, talk about the impact of policy. It was very, very difficult to get compassionate-use exceptions from the FDA until recently. I've seen the value of advocacy, and I see the continuing need for advocacy, sort-of in amping-up even more when you and I started working on the value of innovation efforts with Celgene, and some other companies, to sort of raise consciousness about not just the value of the products, but the value of the lives that these products would help protect and benefit.

Dr. Bob Goldberg (14m 48s):
We're now at a point where there are more products, there's more opportunity, but the bad old barriers are still there. I think they're a little bit shaky, but we need to tear them down. I love the fact that you call it Patient's Uprising. I would say Impatient Uprising.

Terry Wilcox (15m 9s):
Yeah, that too. Speaking of that, we are going to hear from one of our own patient advocates, Melissa Tower. Melissa is a graduate of our Patients Rising Advocacy Masterclass, and part of our Delegate Program. She's also the Executive Director of The Support Fibromyalgia Network. Melissa was diagnosed with fibromyalgia as a teenager, which led her into her current advocacy journey. A journey that was at first, pretty daunting, but she shared how she found her voice in advocacy and the importance of engaging with lawmakers on the issues that impact patients.

Melissa Tower (15m 43s):
Living with a chronic illness for so long, I had forgotten that I had any power. I felt so defeated in this healthcare system. When you're talking about changing policy, or even raising a voice and sharing with people, I didn't realize that I could actually do that. When you talk to representatives, you do feel heard. We've had some great positive experiences and one thing I noticed from the other advocates, because we invited a lot of support groups to join us, is that they became a voice for other people that couldn't attend or be a part of it. You're really becoming this larger voice of a community, you're representing other people, you're creating more awareness on Capitol Hill and that really resonates to you.

Melissa Tower (16m 27s):
You can take that back and people feel much more empowered, because again, you constantly feel defeated. You're trying to manage a chronic illness, you're going into this medical system and paying bills. This is something so unique, sharing that experience, people do listen and your voice does feel heard.

Dr. Bob Goldberg (16m 51s):
It's something unique about Patients Rising and that is, in a lot of cases, there are a lot of turf battles even among smaller, less well-funded organizations. One of the things that comes out of my conversations, with the advocates that I've spoken to is, they understand the importance of collaboration and advocating for issues that impact the community as a whole, because there are a lot of common causes that need to be advanced.

Terry Wilcox (17m 22s):
Speaking of collaboration, here's Melissa on how collaboration can lead to positive change.

Melissa Tower (17m 27s):
I love the collaboration piece, because there's a lot that we need changes for in the healthcare system. It's a unique experience to be able to learn from other communities and what they're working on, also cross collaboration for things we all need. Especially for things like transparency in health care, which has become very forefront for me. With step therapy, we talked about it and it's been a great learning experience to know what kind of things we can advocate for and really come together across different communities. I love the idea of transparency. If we could improve the quality and consistency of care at multiple levels in our healthcare system.

Melissa Tower (18m 9s):
One of the big things is price in transparency, and as patients and caregivers, we have really important decisions to make. I think medical debt is something real and it's very unfortunate. We need to have this information up front. We need to be able to make better decisions. I'm currently going through that situation as I prepare for a surgery coming up in May. I had to go through the pricing and I've been hit with some surprise bills at the end, but I needed the testing. I insisted on more advanced testing. I didn't know that it was going to be much more expensive than I thought, but these are things that I would love to know in advance. I'm sure a lot of patients would love to know in advance and we've got to do a better job at having these conversations.

Terry Wilcox (18m 54s):
She's totally pointing out why transparency is so important right here. I mean, Melissa couldn't have done a better job in teeing-up. Why on Earth, could she not know what her testing was going to cost before she got tested? In what universe?

Dr. Bob Goldberg (19m 8s):
Yeah, yeah.

Terry Wilcox (19m 8s):
Other things that we're going to talk about at the fly-in, just so everybody is aware, this is what I call an UFA year. Where we've got all the PADUFA, MADUFA, GUFA. The Biosimilars one, which isn't exactly an UFA, but all of the User Fee Agreements is basically what those are with the FDA are being reauthorized this year. Any amendments and stuff, we may talk about that. We're obviously going to talk about some of the benefit design issues. The top three bills on benefit design issues are Safe Step Act, All Copays Count Act and Seniors Timely Access to Care Act, which I've written about quite a bit.

Terry Wilcox (19m 52s):
I've gotten very connected with the ophthalmology folks, because they were having prior-authorization issues, Bob, with cataract surgery.

Dr. Bob Goldberg (19m 58s):
What?

Terry Wilcox (19m 58s):
Yeah, it was like insane. When I read about it, I was like, "Oh yeah, I want to write about cataract surgery prior-authorization issues", because it was something totally off-the-grid. It wasn't a treatment or a medicine. So I always like to...

Dr. Bob Goldberg (20m 15s):
Yeah, you know cataract surgery is way overrated. It's better to sort of grope your way through life!

Terry Wilcox (20m 21s):
It's a surgery that every one in my family has literally had. So folks, we want wrap-up with some words of advice from Melissa on how the listener can get started and advocate for the issues that are most important to you. Take a listen.

Melissa Tower (20m 36s):
I would say it's all about getting started. It can feel very intimidating, but I encourage people to find others that will encourage you, because it can feel defeating and lonely. Look for people that are advocating and ask them questions. It may not be in a similar community, but we have all learned experiences. Find those people willing to share, open-up and maybe just reach-out. I think that's what I noticed too, from the Masterclass and the Delegate Program, I could reach-out to people. Like the MS community rare disease space, they were willing to talk about their experiences and what they're advocating for. Maybe I could even watch a meeting, participate and just be a fly on-the-wall to learn.

Melissa Tower (21m 19s):
There are people out there that are willing to help you, so find those people, reach out and just start the process.

Terry Wilcox (21m 27s):
We would love to have you join us this year, folks, for our 2022 Patient Uprising Fly-in. It's June 14th and 15th in Washington, DC. You'll have the opportunity to meet fellow patient advocates and tell your own story to lawmakers about the biggest issues facing patients. You can find a link to more information and how to register in the show notes. This episode of The Patients Rising Podcast is brought to you by Patients Rising Concierge. A new service from Patients Rising that helps patients and caregivers find the resources they need to find stability and support throughout their healthcare journey.

Terry Wilcox (22m 10s):
From finding a professional advocate to help with insurance challenges, to legal and tax counsel, to local caregiving resources, and so much more. Our team is standing by to help you navigate the healthcare system and connect you to the services you need. To learn more, visit patientsrisingconcierge.org, or email us at askusanything@patientsrising.org. Now we hear from our field correspondent, Kate Pecora, who brings us stories each week from patient advocates everywhere.

Terry Wilcox (22m 54s):
This week, Kate is our international correspondent bringing us the story of Megan Staley, a Canadian who lives with endometriosis and Behcets. Megan shares how extensive delays have pushed off the procedure she needs.

Kate Pecora (23m 6s):
Today I'm speaking with Megan Staley. Megan has a unique story about living in Canada and experiencing the health system in a different country. She's come on to express her experiences living with endometriosis, among other health conditions. Nice to talk with you today, Megan.

Megan Staley (23m 19s):
Thank you so much for having me.

Kate Pecora (23m 22s):
Could you start off by telling me a little bit about yourself, what the conditions are that you're living with, and then how that diagnoses impacts your advocacy journey and your daily life.

Megan Staley (23m 35s):
So I have a number of medical conditions. One of them actually inspired my YouTube page. It's endometriosis and I have Stage 4. It actually started way back when I was a kid. When I was eleven is when I first menstruated - TMI, but that's when it started. I was later diagnosed officially through my first surgery back in 2016. I also have a rare condition called Behcets Disease, which basically is a systemic condition, so it affects the entire body.

Megan Staley (24m 15s):
I also have dysmotility disease of my large colon, I have gastroparesis, and I also have dysmotility disease of my esophagus and my small bowel. I was officially diagnosed with colon failure this year. I was always skeptical. They were doing a lot of workups for it, but I was officially diagnosed as of about two weeks ago, so I'm having my colon removed this year. I also have mass cell disease and I have POTS, or dysautonomia, is what it's also known as. So those are my conditions.

Kate Pecora (24m 47s):
One of the things that we talked about is having the number of health conditions that you have, and the level of considerations that you have to go through when it comes to daily living, right? So being able to go about your day and to kind of check-off the boxes of yes, I can get dressed, I can shower, all of those kinds of things. They take energy and they are especially difficult when you have chronic disabilities. When we were talking about that, one of your recent experiences was having to move back with your parents. Could you talk to me about how that experience has kind of changed your perception of disability?

Megan Staley (25m 29s):
I was a hairstylist. I was a full-time hairstylist before my health conditions actually impacted my ability to work. I had to stop working about four-years-ago, which is crazy to me. I made the difficult decision to move back home two-years-ago, which was difficult to make. I was living in the city at the time, so I had to move back to the suburbs here in Barrie, Ontario, where I'm from originally, so I moved back. Being thirty-seven, that was a huge decision to make. At the time I was thirty-five, and it severely impacted me, because I gave up a lot. I gave up my ability to go out and do things.

Megan Staley (26m 9s):
I stopped driving. I stopped going on walks by myself and now require a walker, part-time. I have some good days where I can go for a walk, and I can go for a bike ride even, but when the bad days come I require a lot of help and that's hard.

Kate Pecora (26m 28s):
You mentioned that you're living, right now, in Ontario. In any country it can be really difficult to live with chronic health conditions, right? I think for our podcast listeners, most of them are based in the US, so they might have a different understanding and expectation of the healthcare system here. For people who aren't familiar with the Canadian healthcare system, what has been your experience? I'm sure that you've had quite a lot of interactions with them.

Megan Staley (26m 57s):
Oh yeah!

Kate Pecora (26m 58s):
So talk to me about how that has been over the past couple of years.

Megan Staley (27m 2s):
As we all know, we're going through a pandemic, still. Our situation is getting better, thankfully, in certain places in the world, especially here in Canada and I'm pretty sure the US as well. We are starting to see more opening up everywhere, but we're still dealing with a lot of backlog in the medical industry, so that's affecting people like me and people with other conditions as well. I'm dealing with a lot of delay workups. I was supposed to have some of the minor surgeries that I had last year. I had to go on a waiting list, so I didn't see any of those medical procedures right away, which I'm sure is being done in other places of the world as well.

Megan Staley (27m 50s):
A lot of people are facing a lot of delays, but it's really bad here in Canada. Unfortunately, I'm seeing people who have cancer that are not getting some of their treatments done at all. It's scary and it's frustrating as well. I've been living with a lot of chronic pain and a lot of issues with my bowel. I was supposed to have an ostomy surgery done, but now we're looking at a completely different procedure. Talking to the surgeon, he's saying that I'm looking at maybe a year or two wait before I see any of those procedures done, which is very frustrating. When you're dealing with a condition like this, you're not able to eat.

Megan Staley (28m 35s):
You're not able to take in enough food to even survive. So, it's just like you're stuck at a wall. Not only that, in the last year, I find a lot of the organization in the medical industry itself, it's all over the place. I remember looking at it a few years ago, things were done quicker. Something as small as going in and getting your blood work done, you could go in right away and have it done. Now you literally have to book a month in advance just to have something as simple as that done.

Kate Pecora (29m 14s):
Thank you so much, Megan. I appreciate it.

Megan Staley (29m 16s):
Awesome. Thank you so much for having me.

Terry Wilcox (29m 19s):
Thanks again for sharing your story with us. If there's a healthcare policy issue that impacts you, or your access to care, we want to hear about it. You can tell your story right here on the podcast by becoming our next patient correspondent. To get started, just send an email to Terry and me at podcast@patientsrising.org. We're so glad you joined us for today's episode. If you found something helpful, we hope you share it with your friends and family. That helps us continue to bring you this show each and every Friday.

Dr. Bob Goldberg (29m 54s):
Make sure to follow the podcast on your favorite app, so you don't miss out on future episodes.

Terry Wilcox (29m 60s):
Next week, we talk about the important role of nurse navigators. They can change the trajectory of a patient's healthcare journey for the better. Join us right here next week for that conversation. Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy!