22. Speaking Out Against Discrimination in Healthcare with Terry Wilcox

Published April 21, 2021

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Show Notes

Age or possible disability does not impact the value of a human life. Unfortunately, the Institute of Clinical and Economic Review, or ICER, produces recommendations on how much new drugs should cost based on these same considerations—age or possible disability.

It is time for patients to say enough is enough. Here at the Alliance, we believe in the power of patient advocacy, and we are proud to stand against this discrimination in healthcare.

Thankfully, we are not alone in our fight against discrimination and our desire to help patients get the best care possible. Organizations like Patients Rising are doing incredible work to empower patients and to fight against discriminatory healthcare rationing.

Terry Wilcox, the Executive Director of Patients Rising, talks with Alliance for Aging Research President and CEO Sue Peschin about quality-adjusted life years and why they are bad for patients and older adults in particular.

Learn more about Patients Rising at https://www.patientsrising.org/.

Episode Transcript

Sue Peschin:

Hello everybody. And welcome to This is Growing Old, a podcast from the Alliance for Aging Research. My name is Sue Peschin and I am the President and CEO of the Alliance for Aging Research. I’m going to start off today’s episode by saying something that shouldn’t be controversial in the least. Age or disability should not impact the value of a human life. It sounds pretty straightforward, right? It shouldn’t even be something that we have to talk about, but unfortunately, the Institute for Clinical and Economic Review, also known as ICER, is an organization that produces recommendations on how much new drugs should base their costs on these same considerations,–age, or possible disability.

Sue Peschin:

It’s time for patients to say, “enough is enough.” Here at the Alliance, we believe in the power of patient advocacy, and we’re proud to stand against this discrimination in healthcare. Thankfully we’re not alone. We have a lot of good fighters beside us and leading the way in our desire to help patients to get the best care possible. Organizations like Patients Rising are doing incredible work to empower patients and to fight against discriminatory healthcare rationing, and here with me today to talk about this is Terry Wilcox, the Executive Director of Patients Rising. Terry, thank you so much for joining us today.

Terry Wilcox:

Thank you, Sue. I really am glad to be here.

Sue Peschin:

Great. Well, could you please explain for our listeners the mission of Patients Rising?

Terry Wilcox:

The mission of Patients Rising is to provide education, resources, and advocacy for people living with chronic and life-threatening illnesses. Our vision is a world where all patients have transparent, affordable access to the treatments and services they need, when they need them. It’s very simple, but that’s our lane. That’s where we stay.

Sue Peschin:

That’s great. Well, simple is good. It’s understandable, and it’s clear. So tell us a little bit about your journey to becoming a patient advocate.

Terry Wilcox:

You know in life, there is a lot of, sometimes you get to a place and you never said, “I want to be in that place.” And it’s funny when I graduated from college, which was a long time ago, I went to school at the Boston Conservatory and I majored in musical theater, which has nothing to do with anything I do today. And I was the girl with the plan. In fact, one of my best friends was always, “oh, you know exactly what you’re doing next.” And, “you know”… So the fact that I just totally took a nose dive in another direction in my mid thirties, it’s kind of what got me into advocacy. I was working in entertainment. I was living in LA, I’d met my husband. I wasn’t married yet. And I got really into producing and storytelling as part of my career and what I was doing.

Terry Wilcox:

I was segment producing for a game show network, or for a video game network of all things, which was just crazy, because my extent of video games is really Pac-Man. And Atari. I was not equipped for Call Of Duty and all of these crazy games, but I did meet a lot of geeks and a lot of people in the tech industry, and learned a lot during that period. But when I decided to start my own production company, because I left segment producing, and my dad at the time ran a cancer clinic in Denver, and he said to me, “you should really start telling some of these patient’s stories. They’re really amazing patients. This is, we had these tablets in our waiting rooms and they’re trying to fill them with more content, and we need this kind of interesting health storytelling.”

Terry Wilcox:

I went and I made a big presentation to, of all people, it was to Ted Okon. I flew to Memphis. My dad knew Ted through other sorts of work that they were doing at the time. I think, the tablets that my dad was talking about were actually in with a company that Ted worked with in Memphis. I pitched a series called Understanding Cancer. We really wanted to get it on air. We went all over. I went with my husband and my crew. We went all over Memphis and Arkansas and Tennessee and Colorado, and just did tons of interviews. I made almost a hundred videos and various stories. We even produced a couple of episodes. Nobody bought into the fact that cancer would make good television. They didn’t think it was very uplifting, but we did end up doing a great deal with the story.

Terry Wilcox:

I learned a lot and I fell in love with patients and I fell in love with advocacy at that point. And then I went back, to Colorado, when the famous crash happened right before President Obama was inaugurated, at the end of Bush’s term. Everything went topsy-turvy for a little while. We lost our funding for that particular project, but I was still determined to continue in the advocacy space. I met my mentor at that point, after a weird set of circumstances. I was converting to Judaism and her father was the rabbi, or he was formerly the rabbi. He had passed away at the temple down the street that I was walking to. My rabbi who was training me said, “do you know Selma Schimmel?” And I said, “No. I’d seen her speak at some of the high holidays services.” And they were like, “you have to meet Selma.”

Terry Wilcox:

I walked in about a couple of weeks later, I met Selma and I was working for Vital Options within a couple of months. I worked with Selma as my mentor for seven years in the cancer space. That’s where most of my advocacy took place. I traveled all over the world with her, literally, and interviewed oncology, key opinion leaders in many countries. We were active in ESMO and ASCO, and cancer used to be my main track. Selma, unfortunately passed away at the end of her… And in 2014, my twins were born on her birthday, September 16th, 2013. She passed away. Yeah, I know she loved that. She was like, she was in the hospital actually, when they were born, instead of be able to call her, it was really a beautiful thing. And she loved that.

Terry Wilcox:

She spent Thanksgiving with them that year. And we had that. I talk about her all the time to the boys, but she unfortunately lost her battle with ovarian cancer in May 2014. I said I was not taking over Vital Options. Sure enough, there wasn’t really anyone to step up to the plate at that time, and so I did. I ran Vital Options for about a year. During that time, we were trying to figure out what to do, because Selma hadn’t really left Vital Options in a condition to live on after her, in the sense that it wasn’t really financially sound, etcetera. All of the things that often happen with smaller organizations, and we got into the policy space and loved it. After about a year or so, it turned out Vital Options, the Board, and those folks, didn’t really want to do policy.

Terry Wilcox:

My husband and I, specifically me, my husband is really no longer working with the organization, he’s on the Board, but that’s about it, got into the policy space, and that’s where I really felt the ability to be able to make change. And I fell in love with policy advocacy at that point. I didn’t know a lot. I know I sound like I know a lot more now, because I do. I mean, I’m incredibly passionate about it and I study it and I read it and I’m constantly wrong, but I do try to come and figure out. I do try to find mentors and those that know more than me, too, to learn from. It’s been an incredible journey, and policy and advocates themselves, and patient stories, and teaching patients. That’s one of the main things I love, is teaching patients, how to use their story in a proactive way to make change. I’m sorry. I think I probably babbled way more than you wanted to hear about that advocacy journey.

Sue Peschin:

No, that was perfect and really interesting to hear about how you came around and how you learned. I think we all have people that helped us along the way. One of the things I really admire about you, and about Patients Rising, is the advocacy that you all have done against quality-adjusted life years, or QALYs, which sounds like a really boring kind of esoteric thing. So tell our listeners, first of all, what are QALYs? Why is it important to advocate on them? And what’s the impact for patients and older adults in particular?

Terry Wilcox:

Well, a QALY or quality adjusted life here, as you have pointed out, is a methodology that essentially places a price tag on the value of living a full year of life in perfect health. Now, drugs or treatments that do not offer a full year of life, or offer less than a full year of quality life are rated lower. Sometimes this can cause, if insurers are looking at ICER, as you spoke of in your intro, the Institute for Clinical and Economic Review reports or things like that. They can use this methodology and these reports to not reimburse for certain medications, or decide not to cover them. As you pointed out, the Institute for Clinical and Economic Review, it’s a very interesting journey. As I said, you’re hearing, Terry, you graduated in Boston Conservatory. Now you’re advocating against QALYs, how did you get there?

Terry Wilcox:

And one of the interesting parts of our initial journey when we started Patients Rising was that my husband had done some work for John Arnold, who was a funder for the Institute of Clinical and Economic Review, his foundation. He had done some work on pensions in California, and he read about this contribution to ICER. My husband was greener than I was as far as healthcare policy, but he went to some of our funders at the time and said, “are you worried about this? You know, John Arnold funding this Institute and in Boston, maybe we should engage here.” That’s sort of how it started. Our interest in that came from that, and we have been following ICER ever since. So we started going to ICER meetings and engaging on ICER in 2016 with the multiple myeloma review, ironically enough, which is also coming up here in April, another one, for CAR-T therapy.

Terry Wilcox:

We have commented and followed ever since, because one of the things that I said to folks at the time was, “look, the next meeting was for a small liver drug.” We didn’t know anyone at the company being reviewed. I looked at my husband and I said, “if we don’t go engage on this every time, no matter who’s funding us, we will look like shells for Pharma.” I said, “I don’t want to do that.” So it didn’t really matter to us at the time who was funding us, or what. We were going to comment and engage and try to understand and follow. We have pretty much done that through the trajectory now, for over four years.

Terry Wilcox:

ICER hasn’t changed much. I’ll be honest. They give a lot of lip service to having input to change their methodology, but they are stuck on this QALYs One of the things that your audience should know, is that it’s troubling. The QALY is so troubling for the elderly and the disabled, because simply being either one or both of those, automatically values you at less than one in the eyes of the QALY. It’s inherently discriminatory, because they can never achieve the highest QALY.

Sue Peschin:

Right.

Sue Peschin:

Yeah. I mean, I am not a health economist by background. My background’s in public health, but I always thought it’s so odd. We get health insurance so that it will be there when we need it. To think that when we need it, we’re going to be sized up and penalized for actually making it to an older age, or making it through with some type of chronic disease or disability. They’re going to say that it’s too expensive to treat us. What’s the point of having insurance? Right? So tell us a little bit more about what is the Institute for Clinical and Economic Review? How have they gotten to be so powerful? How do they use QALYs and how have you worked with patient groups to interact with them?

Terry Wilcox:

Well, the Institute for Clinical and Economic Review, ICER, is a Boston based organization. They do independent reports generally for, almost exclusively actually for, new medications or new treatments being approved by the FDA. A lot of that has focused over the past several years, obviously on some of the higher, newer, higher cost medications, CAR-T therapies, coming up on gene therapies and other types of new and newer treatments. So it’s newer treatments that they’re generally reviewing and they do this. They’ll pick a disease state and basically do this. So they’ll do the report. They’ll say, I can sort of tell you the whole trajectory though, and now they’re doing the report and then they call, I have, what’s called an open input period. Now during that open input period, anyone can comment to them. Basically the people, this is what I’ve discovered after watching it for many years now, is that whoever comments during the open input period suddenly becomes the stakeholders, the part of the stakeholders list.

Terry Wilcox:

Because I guess ICER figures, if you’ve commented during this open input period, you’re really invested in this disease state or these medications. That becomes the stakeholder list. We’re never on a stakeholder list. We generally don’t comment during that period. We don’t comment on the disease-specific, really technical stuff. We feel like that we leave that more to the disease specific organizations. We feel like that’s their lane, and patient groups. Often patient groups will be put in that open input period because honestly, if you’re reviewing Alzheimer’s medications and you are an Alzheimer’s organization of any size, you should comment during that open input period and become a stakeholder and engage with ICER. I can’t promise you that you’re going to feel fulfilled at the end of it.

Terry Wilcox:

I just can’t. Some company organizations work better than others, but many have been disappointed in the process. As a matter of fact, several years ago, during a lung cancer review, I called up one of my colleagues in the lung cancer space. I said, “you know, if you want any insight into doing this, feel free to give me a call. We’ve been to a couple of meetings, we’ve kind of been around the block.” They were, “no, no, no, we’ve got this, we’ve got our experts talking.” I said, “great.” Then they had their first call with the experts in ICER. They called me back about a month later and they said, “oh my God, can we go to lunch?” The first thing out of their mouth at lunch was, “oh, it was such a horrible experience. They were so rude.”

Terry Wilcox:

“They dismissed our concern.” I don’t think they’ve made it a conscious effort to not have quite that experience anymore for patient groups. And they’ve tried to partner. I’m not exactly sure that even then the partnership is rewarding. I still don’t know that when you’re using QALYs, as we’re pointing out here, it’s inherently discriminatory and it’s inherently not taking the patient perspective into it. Until we, as a country, are looking at all of our healthcare systems, and I refuse to call the United States a healthcare system, I flat refuse to use that term because we’re many systems, but until we’re all designing benefits that take into consideration the value of patients and what patient value is, then what are we doing?

Sue Peschin:

Right.

Terry Wilcox:

What are we doing? We’re just arbitrary. Just the fact that now if you go, I’m kind of a geek. So now if you go to ICER’s website, you can register for something called ICER analytics, which allows you to put your own inputs in and fiddle with their methodology. If you can fiddle with your methodology, what are we doing? You can make it whatever you want. So if you’re going to fiddle with it, why are we even using it?

Sue Peschin:

Right. Yeah. And it’s all like putting a thumb on the scale, right? We’re going to try to make it seem a little bit more fair and however much you press down and you can’t necessarily replicate it, after you try to do that, or explain how you ended up, how much pressure you put, but, you can do it. Then we can justify that it was fairer than it really was. So how can listeners, if they’re interested, get involved and advocate for a ban on QALYs or to raise awareness about any of this?

Terry Wilcox:

Well, there’s a couple of things. If there’re any listeners who are based in Connecticut right now, there is a QALY ban bill, that’s percolating in the state, that would be fantastic for folks in that region to get behind. You can always reach out to me at [email protected] I can give you more information on that. One of the things that we do at Patients Rising is we just started a Patients Rising advocacy masterclass, where we train patient advocates, not just on one issue, but we train them for 14 weeks. Right now we’re training 80 advocates across 30 states.

Sue Peschin:

Wow.

Terry Wilcox:

We’re training you on everything from QALYs, to what ICER is, to what value frameworks are in general, to DUR and P&T board, to MAC-PAC. We just added. We’ve got many things that we try to work in and train these advocates, because we are of the belief that patient stories and patients themselves are the sea change for how we bring patient value to healthcare.

Terry Wilcox:

It’s not just you, and not just Sue and Terry and all the other advocates, in DC and around the country. It’s really about those patients that are living this daily experience, across many disease states. We have many ways to get involved with that. The first date, ironically enough, in the country to pass a QALY ban, was Oklahoma. I know there’s been some talk of a QALY ban in Texas. I am from Texas originally. So I said, “Texas, get on with it.” I mean Oklahoma beat us.

Sue Peschin:

It’s a pride thing now, right?

Terry Wilcox:

It’s a pride thing at this point. I said, “come on, come on. Let’s move that bill.” So there’re many ways. I know a lot of other states that will be coming up with these bills. I know there’s a big push for it. This has been an interesting, as you probably know, advocacy year around the country, having come out of COVID, but it is a huge issue.

Terry Wilcox:

It’s something that we really do want to push. There’s a drug pricing review board. It’s being pushed in Colorado. The Governor’s really pushing for it, and I’m not going to go into the nitty gritty details of that. One of the things that we did manage to, or not we, but advocates and folks, did manage to get put into that particular bill, which we’re certain, some form of it will pass, is a QALY plan. So there are ways to get, if they are creating things that sound scary, like drug pricing, review boards, to perhaps, make changes within things that are happening. So that’s another thing to look out for. It may not just be a QALY ban, but it may be something within a bill that can make it less discriminatory. If that makes sense.

Sue Peschin:

Absolutely. That’s great. Well, we will definitely let our listeners know about your email address, how to get in touch. We also oftentimes pick up alerts from your group and other groups on our ICERfacts.org website. So people can also check things out that way, but we keep up, because we hear from groups like Patients Rising, so folks need to tune in. All right. So I’m going to switch gears here a bit to ask you a question that we ask everybody who comes on our show. When you were a kid, what did you imagine growing older would be like?

Terry Wilcox:

Well, my grandmother was on a tractor at 75 years old plowing fields. She lived on 500 acres in the Ozarks and literally had to carry her up the hill. When I was a kid, that was my happy place, that farm in Arkansas. I actually imagined that’s how I would grow old, that I would wear a pink cowboy hat and ride a Bush Hog and drive it around and cut hay. Now, unfortunately, my grandmother passed away in 2011 and the farm is no longer part of the family. So I’ll have to find a new farm and a new Bush Hog, but I did really love that. That’s always how I imagined getting old, but it would be like my crazy grandmother and I would live in the middle of nowhere, and I would sing old hymns, which is what she did.

Sue Peschin:

Awesome. And what about the pink cowboy hat?

Terry Wilcox:

The pink cowboy hat does still exist.

Sue Peschin:

Very cool, because it’s all about the look, then you get the attitude. Right? Exactly. So what do you enjoy most about growing older now?

Terry Wilcox:

Oh, so many things. You know I had kids really late in life. I was 44 when I had twin boys and I’m just over 50 now. And the one thing that I’ll say is I really felt like my jeans fit actually for the first time. I’ve always felt like a really old soul. So now I just feel like I’m in my own, I think, in a good place and that I’m not as concerned about what other people think. I’m a better mother. I can’t even imagine myself being a mother at 30. I was a mess, I’m a much calmer, better human at this age. I feel like I finally fit my whole genome that I was born with.

Sue Peschin:

That’s great.

Sue Peschin:

I love it. Oh, that’s nice. That’s good to hear. I think a lot of people who work in these types of topics have the old soul quality and it’s the first time we’ve heard somebody say, “I finally feel like I fit.” So that’s wonderful to hear Terry, thank you so much for joining us today. It was a pleasure.

Terry Wilcox:

Thank you, Sue. Thank you for having me.

Sue Peschin:

Absolutely. You’re welcome. So everyone, we hope you enjoyed today’s conversation and we encourage you to visit ICERfacts.org, to learn more about how you can get involved on our end and for how you can get involved with Patients Rising. You should sign up for everything and to receive news updates on ICER’s activity and opportunities to connect with elected officials. Please stay tuned for new episodes of This is Growing Old. Every other Wednesday, you can subscribe on Apple podcasts, Google podcasts, Spotify, or anywhere else you listen to podcasts. Thank you for listening to This is Growing Old and have a great day.