Patients on Capitol Hill

Dorothea Lantz (6s):
So, in addition to being a caregiver, and a mom, I understand the value of being involved in government and having your voice heard. Being a parent of a child, that has a rare disease, we have to be able to band together in order to have our voices heard.

Sarah (21s):
Welcome to The Patient's Rising Podcast. I'm producer, Sarah, filling in for Terry Wilcox, Executive Director of Patients Rising and Dr. Bob Goldberg, Co-Founder of the Center for Medicine in the Public Interest. This week, Terry and Dr. Bob joined over 60 patients, caregivers and advocates on Capitol Hill for the Patients Rising Now, We The Patients Fly-In. During this two-day event, members of the chronic disease community came together as one in Washington DC, to advocate for legislation that will improve healthcare access, affordability, and transparency.

Sarah (1m 1s):
I caught-up with several patient advocates between their meetings with Senators, Representatives and Congressional staff. In the halls of Congress, I spoke first with Dorothea Lantz. She traveled from Miami with her husband and their son, Hunter, a five-year-old living with a rare disease called Prader-Willi Syndrome or PWS. Here's his mom Dorothea.

Dorothea Lantz (1m 26s):
With PWSA USA, I'm actually in charge of all of our advocacy and all of our volunteers. In addition to being a caregiver, and a mom, I understand the value of being involved in government and having your voice heard. Being a parent of a child that has a rare disease, we have to be able to band together in order to have our voices heard. Being up here and being able to not just have our voices heard, but to show some of the elected officials what some of our struggles are on a day-to-day basis, it's just really an amazing opportunity for all of us.

Sarah (1m 59s):
You have your son, and your husband, here with you today and you've been going through meetings all across Capitol Hill. Can you tell us a little bit about how those meetings have gone, especially for the folks who are interested in this kind of advocacy, but don't know what a member meeting looks like and all of that? Can you kind of bring us into that room and give us a little insight on how that goes?

Dorothea Lantz (2m 19s):
Absolutely! So, it's been kind of incredible. We had five meetings this morning with members from all over the country. We met with staff members, which is really typical, when you're coming to DC. Being able to have my son in tow, who is just almost five-years-old, the reaction when we walk into the room with him is just a little bit different. He is young, he is non-verbal, and the staff has been really receptive to seeing this. We haven't met with one staff member, well, we met with one staff member who actually knew what Prader-Willi was, but that's because I did a virtual Fly-In several months ago and we met several months ago. Just having them be able to make that kind of a connection with someone who has a rare disease has just been amazing.

Dorothea Lantz (3m 4s):
The reception has been great. Everybody's been really responsive to our Ask. Everybody understands that healthcare in this country is broken, and that the rare disease community is more affected than any other community that you could possibly imagine.

Sarah (3m 19s):
You were talking about that Ask. Can you tell us what that is, what you're advocating for here on Capitol Hill?

Dorothea Lantz (3m 25s):
I can tell you where I'd been going with it. One of the things that's really important to us is, this is the Step Therapy issue that's going on right now. It affects us personally. We know that my son has been on the same insurance since he was born. In October, his insurance is going to change for the first time. I've already spoken with the insurance manager, who told me that he's going to have to take Norditropin instead of Genotropin, which is the growth hormone that he's been on since he was a child. The problem is, this specific generic that they want to put him on, has synthetics in it, which Hunter has an adverse reaction to. What I was trying to explain is, I understand that the generics are necessary, and absolutely there is a place for them in healthcare, but you have to allow patients the choice, especially when you're dealing with rare disease patients, and you don't know how different drugs are going to affect them.

Dorothea Lantz (4m 19s):
When you're dealing with a child who has been on the same medication for their entire life, they're going to make my son sick, so they can make him better, and that's not okay. What does that cost the taxpayers? He is going to end-up in the hospital. This is what will happen. He's going to end up with huge medical bills. Who pays for those medical bills? That has been one of the things I've been really, really speaking to. We have been talking about PDUFA. We've talked about all the UFAs, actually. Don't ask me to explain all the UFAs, but it's just the PBMs have been a really, really big issue, and a really hot topic, apparently. Every office that we met with seems to really be understanding what's going on with PBMs.

Dorothea Lantz (5m 2s):
The fact that we have these middlemen, that are making these deals, and people are just now finding out that there's actually a middleman between them and their medicine. It's a little infuriating that there's no transparency. That's been a really, really hot issue in every single office that we've met with.

Sarah (5m 18s):
Dorothea mentioned a few of the policy priorities for attendees of the, We The Patients Fly-In. Patients Rising Now, Executive Director, Terry Wilcox, tells us more about that agenda.

Terry Wilcox (5m 31s):
Some of the big things that we're asking for are the Safe Step Act and Not All Copays Count Act, these are two of our pro-patient access bills that we're talking about. A lot of that comes down to other things that Patients Rising is talking about, which is PBM transparency, and just overall transparency in the supply-chain. When we talk about things, we talk about it through the lens of access, transparency and affordability for patients, meaning lowering your out-of-pocket costs. Those have been our primary Ask. We focused on bills. We thanked the reps who have signed onto those bills. We've asked, with our patient stories in the room to those that may not know about the bill, and just try to educate them and their staff on those bills.

Sarah (6m 13s):
One of the big programs, that we've talked about previously, is the Patients Rising Now Master Advocacy Master Class, and many of the people here have attended that and gone through the program. Do you see that they're putting these tools and resources to work in their meetings they're having today?

Terry Wilcox (6m 30s):
Oh, absolutely! They are really using the skills that they've learned, from all the folks that we have doing the modules, through our Patients Rising Advocacy Masterclass. You can tell that some of them have worked with Jim. They're in there. They're ready to go, to the point that they've got their one-minute story, or their three-minute story. It depends on how long they're given. Especially if you have a member meeting, it's like you walk in, you think you have thirty minutes and it's like, I've got a hard fifteen-minute stop and they're really ready. They just pivot and it's been really great.

Sarah (6m 57s):
Talk a little bit about those member meetings. What has it been like, in terms of the advocates that are here, to have that one-on-one experience with a member of Congress? Tell us about what that's like.

Terry Wilcox (7m 9s):
Oh, it's great and one of the really good things is we're working in teams. We're not always necessarily meeting with someone who's a constituent, so I always kick-off with the fact that Patients Rising Now is representing all of us. That our goal is ten patient stories in every district around the country. You can go to patientsrisingstories.org. You can see all the patients that we already have in that district, around the country, so having the patient advocates in there talking with a member of Congress directly, you can feel the energy just shifts a little. It's not that you don't want to talk to the Health Legislative Director, in fact, a lot of us know that those are the most important people to talk to.

Terry Wilcox (7m 49s):
We're just as excited to talk to them, but there's something exciting to actually be able to talk to a member of Congress that they've either seen or talked to. It's the celebrity of the patient advocate.

Sarah (8m 2s):
What are the next steps after everyone heads back to their respective states and their hometowns? What does Patients Rising Now do next?

Terry Wilcox (8m 10s):
Well, our next step is to get ready for a new Congress, right? This is a big election year. We took a gamble and had an in-person Fly-In, for the first time, after COVID and we're looking forward to having We The Patients Fly-In for the 118th Congress in 2023. Honestly, we're going to go back and start getting ready for that, and what that looks like - Honestly, you won't know what that looks like until November, officially. Looking at, what of these things are bi-partisan? Where can we have champions for certain things in both parties? You know, healthcare is very bipartisan. We talk about that all the time and how we're going to move forward with some of these issues to help patients.

Sarah (8m 49s):
What would you say to those who are listening, that really want to get involved in this, but don't feel like maybe their voice makes a difference or them as one person can't push-forward these goals and these action items? What would your advice be to them?

Terry Wilcox (9m 4s):
Well, here's my advice. We had an Ask today. Asking our representatives to join-up the patient access caucus, which we're working to form here on Capitol Hill. We believe there should be an All-Patient Access caucus to talk about these very important bipartisan issues, in hopes that we can solve some of these problems. That was one of our Asks, please join the Patient Access Caucus. Please join and help us solve these problems. We got one official join. We are going to join, we're going to call this person, this member, and we're going to join, and you know why? There were three people from his district standing there asking him to, that's why.

Sarah (9m 43s):
This was the first Fly-In experience for many of the patient advocates, including Jess Woffard, from Pittsburgh. Jess is both a patient, and a nurse, bringing her unique perspectives to Capitol Hill.

Jess Woffard (9m 57s):
My name is Jess Woffard. I am from Pittsburgh, Pennsylvania. I have had Crohn's disease for 15-years. I've also had an ileostomy for three years. So, I'm here representing the IBD community as well as the ostomy and disability community.

Sarah (10m 10s):
So, you've been in meetings on Capitol Hill all day. Can you bring us inside the room and tell us a little bit about how that's gone?

Jess Woffard (10m 18s):
Absolutely! It was extremely exciting and very nerve wracking, because this is the first time I've done anything like this. I've never done it virtual. I've never done it in person, so it was very exciting for me. We went in and actually spoke to an actual representative, instead of just a legislative assistant, so that was extremely exciting. She was very wonderful, very knowledgeable, and very willing to listen to us, and sees everything from a patient perspective. That made it much better for us as she already kind of knew the issue, so she was already kind-of on our side. That made that meeting a lot easier, but it's been fantastic so far today. We still have a couple of meetings left in the afternoon.

Sarah (10m 54s):
I know we're talking about a whole host of topics here for the Fly-In. Can you tell us what, in particular, is important to you and what you're advocating for today?

Jess Woffard (11m 4s):
Sure. So regulating PBMs is a very, very big deal, especially with all chronic and rare diseases. It's something that needs to be regulated. It kind of goes hand-in-hand with patient transparency. Of course, prices for anything, no matter who you are, is important, but especially when you have a chronic illness. You need to be on medications long-term. The cost of anything is always super important, so making sure we try to regulate, or come up with, a better solution for how PBMs handle medications and handle our care. Also with patient transparency, just so everyone knows what everything costs and where everything's coming from, so we can be better advocates for ourself as well.

Sarah (11m 43s):
If passed, these bills would significantly improve care for the chronic disease community. That includes Tami Seretti, an advocate for patients with psoriasis and psoriatic arthritis.

Tami Seretti (11m 55s):
Yes, I'm interested in all of the bills, but mostly the All Copays Count bill. In the last couple of years, my copays for my specialty medication patient, has gone from $35 a month to $1,500 a month. My copay assistance through the drug company caps out at $9,000 a month. So, I'm potentially on the hook for the rest of it, which is very painful and really unaffordable. I'm trying to talk to legislatures, and their staff, about getting access to those medications and having the copay assistance, that is paid to the insurance companies, covered as part of the deductible like it used to be, which would solve the whole problem.

Sarah (12m 58s):
Have you felt, that in your meeting so far today, that legislators and their staff have been receptive to this message?

Tami Seretti (13m 5s):
Yeah, I do. Everybody has said this is something that we're very familiar with. This is something that we hear a lot about. We're on the right path. It is just a question of how we get from where it is, to getting it passed as a law, which is always a big hurdle, but everybody seems to be very familiar with it. Everybody has had a story, "Oh, that has happened to my friend, my relative. I've had that. I know someone that's happened to." So, it's getting more and more common.

Tami Seretti (13m 46s):
Legislators know about it more than they used to just because it's so prevalent now.

Sarah (13m 57s):
Do you feel like patients and caregivers, that are here today, are breaking-through and really making their voices heard on these issues?

Tami Seretti (14m 4s):
I do feel like they are, because just in our experience today, we, and there's four of us on our team, and we all have a different experience to share. The members and the assistants, that we've talked to today, have all been very interested and very engaged. They've asked good questions and they've all seemed very empathetic to what we're going through. That goes a long way, and to have support like that, is very helpful. They just seem to really know what we were talking about.

Sarah (14m 49s):
Cohost, Dr. Bob Goldberg, walked the halls of Congress alongside many of the Patients Rising Now advocates. He talks about his experience this week and offers his projections for the future of these bills.

Dr. Bob Goldberg (15m 4s):
Well, first of all, everyone offers us good drinks and I got a Diet Dr. Pepper out of Congressman Burgess' office, so I I'm fully hydrated. That's a good outcome, but the other outcome was just how impassioned and how impactful the patient voice has been, both as collective, and the individuals. Jennifer Peterson from District Two, New Jersey, was part of my team and she took over. She was the quarterback. She touched all the points and what's incredible, Sarah, is there's a lot of bipartisan support for the legislation that Patients Rising has supported.

Dr. Bob Goldberg (15m 51s):
It shows just how impactful the patient voice can be when it's organized. I mean, two years ago, we weren't talking about all these so-called micro issues, and now we are. These are the pieces of legislation that members of both sides, Democrat and Republican, seem to be coalescing around as a way of showing they can actually do something. I came away very, not just hydrated, but I came away very positive, and really in awe, of the energy and the intelligence of the advocates.

Sarah (16m 28s):
Do you think then, based on those meetings, that there's also the same sense of urgency among these offices that patients have for these issues?

Dr. Bob Goldberg (16m 36s):
That's a different question. I think in a couple of places, it is very personal to the members of Congress, because either they had a loved one that suffered from a disease, or in other cases, it's part of the longstanding commitment to these issues. I think I wouldn't say sense of urgency, but a sense of purpose, which will carry over from this session to the next. I think we'll set the stage for discussing some of the more important topics, that they themselves were articulating, and particularly, the lack of continuity of care.

Dr. Bob Goldberg (17m 20s):
I think that's going to be a very, very potent and important issue that will be addressed with urgency in the next Congress.

Sarah (17m 29s):
Can you give us a bit of a forecast for some of these bills we've been talking about? Do you think that there's any that could potentially cross the finish-line anytime soon?

Dr. Bob Goldberg (17m 39s):
Well, the Yankees will win the pennant, at least the League Championship. No, I think the PBM bill will cross the line. There are 300 co-sponsors, as you know, for the effort to clean-up the mess that we call Step Therapy or Fail First. I think that will cross the finish-line. I think the quality and other things are not quite there yet. There still needs to be more education on behalf of patient groups going forward. This is the important thing. The patient groups are being listened to and there's an eagerness to listen. I think the more people - I'm trying to think of a good analogy, but we needed to get the patients in the race and sponsoring the races, if you will, so that these bills will cross the finish-line.

Dr. Bob Goldberg (18m 29s):
Until recently, it's groups like ICER and the traditional lobbyists, that influence. I think the patients are right up there making an impact and we should hopefully continue to do so.

Sarah (18m 44s):
To hear more patient stories from the 2022 Patients Rising Now, We the Patients Fly-In, join us on Twitter at Patients Rise Now. You can also see images, videos, and more, by checking out the hashtag We The Patients on social media. Field Correspondent, Kate Pecora, is handling the show next week with a special conversation recorded at the Fly-In. You don't want to miss it. Until then, for Terry, Dr. Bob and the entire team at Patients Rising, I'm Sarah, stay healthy and we'll see you next week with another new episode!