David Mitchell has an incurable blood cancer called multiple myeloma. The price of his current drugs is more than $875,000 per year. Like millions of Americans, David needs innovation and new drugs to survive, but he believes drugs don’t work if people can’t afford them. After more than 30 years at a D.C. policy and communications firm, he retired in December 2016 to devote his full energy to helping change policy to lower prescription drug prices. Patients For Affordable Drugs mobilizes patients and allies at the federal and state levels and does not accept funding from any organizations that profit from the development or distribution of prescription drugs. It is one of our favorite organizations, and the only one of its kind on the Hill doing this work without the funding of big pharma. Leveraging the power of patient stories, P4AD works on a bipartisan level to create policy change in favor of reduced drug pricing and eased accessibility to necessary medications and treatments. Their work is remarkable, and we are proud to have their founder on the show!
Tune in as David shares:
- how he was first diagnosed with multiple myeloma after experiencing severe back pain
- that he’s been on maintenance drugs continuously for the past 10 years — and these drugs are what have kept him alive
- that at the time of his diagnosis, the median age of survival for his form of cancer was 3-5 years; that has now increased to 8-10 years
- that myeloma mutates and finds its way around drugs — so when treatments stop working, patients typically pass
- that he plans to live to 95 and die of something else entirely
- that the disadvantageous side-effects of his drugs are manageable in comparison to the cancer itself
- how his wife stepped up as a fearless advocate for him until she herself endured breast cancer and its accompanying treatments (she’s a survivor!), and he stepped up for her
- his belief that no cancer patient should endure the “acute” stages of diagnosis and treatment alone
- the importance of looking after his physical and emotional health, and why it’s vital his work be meaningful
- what P4AD does: how they help patients share their stories and are creating communities among these patients
- that P4AD not only engages patients, but patients are also among their staff
- that there is no free market for drugs, and that drug companies have created monopolies to set drug prices and protect those monopolies in whatever way they wish
- that pharma invents groups akin to P4AD, including Patients Rising and the Alliance for Pharmaceutical Access
- how insurance and drug companies monopolize pricing and gouge patients
- where he sees the breakdown of the medical system in the US: that it’s systematically designed without the patient’s access to affordable, comprehensive care in mind
- an acknowledgement of systemic racism in medicine
- that he is also a recovering alcoholic — and has been for 30 years
Lauren: All right, guys, thank you so much for joining us. I am here today with David Mitchell. David lives with an incurable blood cancer called multiple myeloma. He's also the founder of Patients for Affordable Drugs, which is an organization that aims to end the monopoly that drug companies have on drug pricing, and to assist patients in being able to access their drugs as needed. So David, thank you so much for joining us today.
David: Lauren, thank you very much for having me.
Lauren: Oh, it's such a pleasure. I'm so glad to chat with you. I think the work that you're doing with Patients for Affordable Drugs is so important and so exciting for so many in this community. I know you alone have drug prices that are in the $800,000s per year. So we're going to get into all of that. But I think we should start at the very beginning of your story. And I'd love to find out when and how you first realized you were experiencing a health crisis and what steps you've since taken to control your health.
David: It was about 10 years ago now that I began to have recurring back pain, and it was back pain that moved all around my back. It was over here. It was over there. And then I got colds, but I didn't just get colds. They knocked me completely for a loop. I thought the colds were just life, and I thought the back pain was from exercising. But one day … in fact, it was Halloween in 2010, Halloween morning …
Lauren: That’s ominous.
David: Yeah, it was! It wasn't funny, it was very scary. I got out of bed — and fell to the floor and I couldn't get up. In fact, I couldn't move. I lay there for a while and then I called my primary care doctor and they prescribed some muscle relaxers, pain medications. And I laid on the floor … actually, this is the truth … my youngest son, who was home at the time, thinks to this day I'm crazy … I laid on the floor for 24 hours before I gave up and called the ambulance. I went to the emergency room, and they pumped me full of all sorts of painkillers. It was now Sunday afternoon, evening. They said we could check you in and do an MRI, but you don't want to do that. Let's see if we can’t pump you with enough painkillers to send you home. And then have an MRI done outpatient. Well, in the ensuing three days, I saw other doctors. I finally went to a sports doctor; he ordered an MRI because I still thought I had a sore back from exercise. And when we went to get the results of the MRI, I had to wait in the car because I could not walk; I had to recline the seat. Getting around was a little difficult for those four days. And my wife, and now my oldest son, who had come with us for this one, said “We have to go right now to the emergency room. And I said, “Okay, do you want to tell me what happened?" “We have to go right now to the emergency room.” So I was laying on the emergency room bed when a nice gentleman walked in, and he said, "Hi, I’m Paul Thambi. I’m the oncologist on duty." And I said, “Oh, Dr. Thambi, you must be in the wrong place. I have a sore back." And he said, “No, unfortunately, I don't think I am.” What that MRI showed that I did not know and the sports doctor did tell my wife and son, but she cried and was all upset … I didn't know. They pulled themselves together to take me to the emergency room.
And what I didn't know was that what was on the MRI were lesions, all sorts of lesions, all up and down my spine. I had seven cracked ribs. And I had a compression fracture of my T11 vertebrae.
How did that happen? It happened because multiple myeloma involves your bones. And it can involve your kidneys, too; I did not have kidney involvement, thank goodness. Multiple myeloma causes a situation where you start to make a whole bunch of these myeloma cells … crowds out all the other cells, the good cells like white blood cells, platelets, red blood cells. And pretty soon you’ve got this cancer that is circulating through your blood. And it goes to lots of locations, which is why they call it multiple myeloma. And for many of us, the excess myeloma cells park on your bones and eat them. So I didn't know until later when they did a full body X-ray … I have holes in my skull, and in my pelvis and in my forearm. I don't have any holes in my long bones. So I can do what I'm doing now; I function. They fixed my back by doing a thing called a balloon kyphoplasty, where they go into your back and they scrape out the broken vertebra and blow up a balloon to make as much space as possible. Then they pump in some cement. And one night, I went to have that surgery. And when I woke up the next morning, the doctor came in, he said, “Get out of bed.” And I said, “I don't know if I can get out of bed.” He said, “We’re gonna find out, get out of bed." And I could walk, they fixed it.
Lauren: That’s an incredible surgery. I mean, it sounds unbelievably complicated, but wow.
David: It doesn't work for everybody either. So I’m very lucky. So that set me on a journey that any cancer patient would understand and other patients who are diagnosed with conditions that are life-altering. Because that set in motion five rounds of chemotherapy and then harvesting my good cells to be able to do an autologous stem cell transplant. We didn't do it; they’re in a freezer in Boston. And then I went on maintenance drugs, and I've been on maintenance drugs continuously for the last 10 years, and the maintenance drugs are keeping me alive. We could talk more about life as a cancer patient in continuous therapy, now or later.
Lauren: Yeah, we're gonna get into it. I'm fascinated to know, because this is something that's come up when I've had people on the show who have survived cancer … I've had one in particular say that she had to go through the realization, the discovery, that cancer is a chronic illness, and not necessarily a terminal one. And it seems like your experience of cancer is much along those lines, that you're living with a chronic illness that you're managing with drugs. And while when we hear the C-word, it sends us all into sort of the terminal territory and concerns about our livelihood … you've been able to live a fairly healthy lifestyle for the last decade, because you're doing what you need to do to maintain your health, right?
David: That’s correct. In fact, my first night in the hospital when that oncologist — who is still my community oncologist, by the way — left, he said, “I don't want you to go on the Internet, because all the data are old.” Well, of course, I immediately went on the Internet … !
Lauren: Of course!
David: And they said the average survival, the median survival, from diagnosis, was three to five years at that time. Well, actually, it was better already by then, because they had found some new drugs. But people still die if they have an aggressive form of multiple myeloma; they still die in 18 months.
I would say that the average survival from diagnosis now is probably eight to 10 years. So I'm pushing up against the limit.
And the reason that you die is because you run out of treatments. Myeloma mutates, and it finds its way around the drugs. And so you run out of things for them to give you, and you die.
Lauren: So there is a terminal aspect to this diagnosis, for sure.
David: It is an incurable blood cancer, it is not curable. Period. And many people die of it. I plan to live till I'm 95 and die of something else entirely.
Lauren: That’s the attitude.
David: The drugs have their own downsides, but the upside is much bigger. The downside is peripheral neuropathy, fatigue.
Lauren: But you can still live with those things.
David: But I can manage those things. And I can have a full life. And I can take care of the other parts of me that are essential to my health in general, but also to being ready for whatever the cancer, whatever the drugs they give me, throw at me.
Lauren: You mentioned that your older son and your wife were made aware of the diagnosis a little bit before you were, and pulled themselves together. I'm wondering what that advocacy journey has looked like for you? Did you find that you needed to lean on them or lean on those close to you in a new way after your diagnosis? And if so, how has that impacted your relationships with those closest to you?
David: I’m very fortunate to have a magnificent woman as my wife. And I have four wonderful children. But she was the advocate. Because when you hear the C-word, all of a sudden you start hearing every third word. I mean, you stop processing. Truly. “What did he say? What was the specific about this?” I wouldn't be able to take it all in, and it's still true today. At times. There have been various crises through the 10 years, it hasn't all been an easy ride. And when the crises hit, it happens again. She made a binder and kept copious notes. She's the one who would get on the phone to advocate, to get the appointment for the necessary screening test or whatever had to happen. And I think, without question, it made me appreciate her more, I'll be honest with you. And love her more deeply. And respect her more, because she's so capable. And then she got cancer.
Lauren: Oh, my goodness.
David: She got cancer about five years ago, she got breast cancer. And she had to do the whole thing; she had to do chemo, surgery, radiation. She's on tamoxifen now.
Lauren: Wow. So she's also a survivor.
David: Yes. So I got to be the advocate in that situation. So we got to flip roles.
Lauren: Yeah. So you've really seen it from both sides.
Lauren: Amazing. And to know that it's deepened your relationship is very promising, isn't it. It works when we show up for each other.
David: Yeah, it does work.
And no cancer patient, in my view, should ever do the acute part alone.
Like later when you’re repeating things and everything's working fine, it’s okay. You don't need to drag someone with you to the appointment to go over the same stuff. But as soon as it kicks up, and gets dangerous or frightening, urgent, she's there with me. For the big important meetings, even now, 10 years later, she's there with me. Because I can't go alone. I'm not efficient enough when that's happening, I become a patient, do you know what I mean?
Lauren: Yeah, And I think that's an interesting point, that you're allowed to become a patient in these circumstances, when you have the kind of support that you've had. You're allowed to surrender a little bit to the experience. And if you can find someone to advocate for you, that's an important thing to experience, to be able to give in to what's going on so that you can actually find a way to get better, and be human.
David: Yep. I do shift into that gear in those times, where I say, I need to focus on taking care of me, I need to be about me. I can't be about my kids or other things. This is a moment where I need to focus on me. And it's not a selfish thing. It's a necessary thing, in order that I can manage what's coming at me physically and emotionally. Almost everybody who's been through a difficult chronic illness or acute problem knows what I'm saying. Like, okay, I'm shutting everything else down! I'm gonna focus on what I have to do.
Lauren: You’re doing self-care. So, hashtag self-care. There we go. So what's a typical day looking like for you, as you're balancing the demands of work and life. You’ve started a an entirely new career out of this diagnosis, like so many of us do, right? And you're managing symptoms day-to-day. It sounds like you're also taking care of the mental health side, as well as the physical side. How are you making all of the puzzle pieces fit from day to day?
David: Well, right now, there isn't an average day. Every day is like every other day with COVID-19.
Lauren: That's a real special wrench in the works there!
David: But I will try to answer your question. Taking into account even that COVID-19 is here. First of all, a long time ago, I figured out there were only three things I could do. I could follow my doctor's advice, take my medicine, and look after my physical and emotional health. Those are the three things I could absolutely do. So physical and emotional health ranks very high. I get up in the morning and my running shoes, my workout shoes and workout clothes, are next to the bed. I go downstairs, turn on the computer, check my emails, read all this healthcare information. Do anything that's urgent, finish that, and then I work out. Either I work out on the treadmill or I work out with weights. Now I'm working out probably every day, but usually six days a week. And it is because I have become convinced … I'm not a young man anymore … that I need to stay fit in order to look after my health in general, but really to be ready for whatever they throw at me. The stem cells that are in the freezer in Boston, if they do a stem cell transplant with those, that's a very taxing procedure.
So when I'm feeling down, and I don't want to work out, I say, you're in training for a stem cell transplant, get your butt downstairs, and do something.
So I work out, I try and eat reasonably well. And then I work. And for me, work gives my life purpose, especially what I'm doing right now. I've always wanted in all that I've ever done, all my work, to have purpose. And to feel like, in some way, I was doing something that had value beyond just getting paid. So that's a big part of what …
Lauren: What gets you out of bed. What makes you happy. Absolutely. Yeah.
David: And so I work. I start the day at 6am. And usually, I'm not done till 4 or 5 in the afternoon. And now in the days of COVID, it's not meeting my wife for dinner at a restaurant, or going to an event at my kids’ school, or going out to a movie. It is, what are we going to make for dinner? Eating has become a much more important part of life! When we're done here, I'll go make dinner for tonight. And then, binge-watching TV shows. We're big movie buffs. So that's how the day looks now. And the important stuff is, for me, the things that contribute to looking after my physical and emotional health, and feeling like I'm making a contribution in the world. I don't know if I'm one of those people who will ever completely retire. I retired officially at the end of 2016, so I could do the work that I'm doing now with Patients for Affordable Drugs. But my youngest son says my retirement is an alternate fact. Because I'm busy.
Lauren: Yeah, well, why don't you tell us more about Patients for Affordable Drugs, and why you founded it, and what you're working toward with this organization.
David: Patients for Affordable Drugs is the only national patient organization focused exclusively on policies to lower drug prices. We're independent, we're bipartisan, and we don't take money from anybody who profits from the development or distribution of prescription drugs.
Lauren: That’s what we love to hear.
David: I decided to do this, because of my experience as a patient. It was searing for me to find out just how expensive and how difficult it was for people who were trying to manage all these health care expenses, and among them, prescription drugs. I had been doing health policy work for longer than I care to tell you, here in Washington. And near the end of that time, I actually began to work for people who were trying to find ways to lower the prices of prescription drugs. So I became more and more frustrated, because there were no patient organizations speaking out about prescription drug prices. And the reason they don't is simply all those organizations take money from drug companies.
A study in The New England Journal of Medicine a couple of years ago found that 83% of patient organizations with budgets in excess of $7.5 million a year take money from the drug companies.
Now, they use that money for good purpose. They use it for patient education, patient support, to advocate for new drugs — especially for diseases that don't have treatments. All that's good, and we don't want that to go away. But on drug prices, they are constrained. And we know it's true, because it's been written about in multiple publications, that when patient groups try to speak out on drug pricing, they hear from their drug company funders, who say it's hard to be nice to you when you talk about me the way you do. There's a great story that ran in The New York Times looking at this, and what happened when the National Multiple Sclerosis Society tried to speak out on drug prices. They're very good on drug pricing, by the way; they're great. But my group, the International Myeloma Foundation, they're scared to death; they will not address drug pricing. And the reason is, they don't want to lose their funding.
Lauren: Which comes from the drug companies a lot of the time.
David: Oh, it does, a huge amount of their funding. So one day in the summer of 2016, I woke up and I had an epiphany. And the epiphany was … hey, if no one else is going to do this, maybe you're supposed to try. It came to me in my head, like, oh, this is what I should do. And I actually knew what I was going to do — if my wife said yes. So that morning, I went downstairs to have coffee with her. And I said, "Honey, can I retire? Can I work for free? Can we put in some of our own money to jumpstart it?” And she said, “Yes.” And so that started this process of figuring out how to launch a 501c3 organization. Now we have a 501c4 as well that can do political and legislative work. The two main things we do, it's really very simple at its core. We collect patient stories, and amplify those stories to policymakers and elected officials. So if you go to our website, PatientsForAffordableDrugs.org, you'll find a map and on that map are 24,000 patient stories — stories of everyday people from all over the country. You can search the map and read the stories. And these are just people who are struggling to pay for drugs that are way, way, way too expensive. So we collect those stories, and we amplify those stories for policymakers and elected officials, and we train patients to be advocates. We've had patients testified before state legislatures all over the country. On network news. We've had patients come to Washington to testify before Congressional committees; we prepare them, we train them, we equip them to speak for themselves. And now we have patient advocates in all 50 states. We're running a patient advocate training tomorrow night, as a matter of fact. So we're trying to give people voice, we're trying to let their stories be the power of what we do. And then the other thing we do, the second thing, is we're building a larger community of patients and allies that can be mobilized in support of policies to lower drug prices.
Lauren: It’s so exciting.
David: There wasn't a patient organization speaking on drug pricing until we stepped into the space. And today we're busy. We're working hard, wonderful staff. And we're working hard right along, even though we can't get near each other! For us, it's especially important … we have a mom of a child with cystic fibrosis, or lungs with cystic fibrosis. He's incredibly high-risk. We have someone else with Crohn's disease, someone else with diabetes. We not only engage patients out there in America, among our staff are patients who are living it and care about trying to address this problem.
Our goal is simple. We need to fix a system that is rigged.
And I use that word advisedly, to benefit the people who make money on it at the expense of the people it's supposed to serve. The big drug companies have spent 40 years and billions of dollars building a system that enables them to dictate the prices of drugs. Literally dictate the prices of drugs. There is no free market for drugs. It's all based on a system of laws and regulations that they put in place to benefit them. And the net result is, they have monopolies. They set prices wherever they want. Monopolies, by the way, because they can raise prices whenever they want. They have an unlimited amount of money to lobby and engage in political activity to protect their monopolies. And so it's a challenge to take them on. But in the absence of a patient voice, a real authentic patient voice, pharma fills the void with paid groups. And I don't mean the real patient groups. I mean, they sometimes do things they shouldn't do. But pharma also invents groups … like, there's a group called Patients Rising, another called the Alliance for Prescription Drug Access, something like that. And they're front groups. But they write letters to members of Congress, and they're completely owned and operated by Big Pharma. So we think our work is important in providing a counterbalance and ensuring that the real stories of real people are brought forward. Because they can make a difference.
Lauren: Absolutely, yeah. It’s so exciting. I know, when I first found out about Patients for Affordable Drugs, I was so thrilled, because, as you say, to find a group that is comprised of patients working for patients, without any ties to the sort of mess of political landscape that comes along with Big Pharma. And also that what you're doing is a bipartisan effort, which is such a rare gem these days as well, politically speaking. To be able to appeal to politicians across party lines, and really get them to understand the crisis that we're undergoing right now. And to be able to try and make these drugs affordable. The fact that you're also a patient, who was thinking about other people — this is an awareness that expands more, I think, when we get a diagnosis. But this idea of the whole, rather than the individual, is also something that we grapple with in our 24-hour news cycle right now. This is the antidote, this community approach. I think it's extremely exciting. And I certainly encourage everyone listening to check out Patients for Affordable Drugs, because what they're doing is changing our world for the better. I'm biased, because I'm a patient, but I'm happy to be on that side of things. And it's just so thrilling that we have an outlet like this that we can turn to, and as you say, sharing stories — which is exactly what we do on the show here. Really being invested in those stories. Because that's how you make change. That's how you create change. I'm wondering also, given your experience … I want to dig into healthcare a little bit. I'm wondering if you see our health care system working for patients. And in what ways specifically — aside from this drug pricing monopoly issue where you're seeing it fall short and requiring improvement. And perhaps ways in which you could imagine improvement immediately?
David: Well, first, let me tell you that we do drug pricing, and we stick pretty closely to drug pricing. Why? Because there are many, many groups out there that work on behalf of coverage issues. Obviously, coverage is critical to the health and well being of Americans. Everybody. You’ve got to have access to good health care that you can afford. When I say good health care, I mean a health care plan that provides comprehensive benefits. That doesn't have co-payments and deductibles that break you. So, coverage is critical. And we're seeing how that plays out with COVID-19. And in relationship to drug prices. So, tens of millions of people have lost their jobs. And because about half of all Americans get their health care through their employers, the people who have been laid off, many of them, have lost their health insurance, too. And if you don't have health insurance — I'll bring it back to drug prices — you pay list prices for drugs. Now in our system, insurance companies and something called PBNs negotiate for lower prices. By the way, they don't do it because they care about us. They do it because they make money by doing it. That's how it works. So you have a list price, and then you have a so-called net price. The net price can vary from your plan to my plan to someone else's plan. Nobody knows what the net prices are; they're all secret. It’s part of our rigged system. But the point is that if you lost your insurance because you got laid off, you are now forced to pay list prices. And list prices are painful.
I'll give you my example. The list price for just the four cancer drugs I am taking right now is $875,000 per year.
David: Now, why am I taking four cancer drugs? And by the way … I take a bunch of other drugs to manage those drugs. But why am I taking four drugs? Well, it's because of my disease. I am refractory to two of those drugs. Do people know what refractory is, on your show? It means when the drug bounces off the cancer. So I started to fail on two of those four drugs. So they added a third to try and turn them up. And then they added a fourth, to try and get a better impact from the combination. Why did they do that? Because they never want to leave any of the drugs behind. Because when they're in my rearview mirror, when we can't squeeze any more out of them, then they're no longer available to me.
Lauren: Well, then it's critical.
David: So the point is, these drugs, if you're exposed to list prices, you're screwed. And it isn't just my situation where it's almost unbelievable to say $875,000 a year, some of these drugs are $100,000 a year, $150,000 a year, $200,000 a year, and the so-called patient assistance programs don't work for everybody. Maybe the money's there, and maybe it's not. And actually, they're just ways for the drug companies to market more drugs. So the system, presently, to go back to your question, is not set up to see to it that every American has access to comprehensive coverage that is affordable for them. And that is the biggest breakdown from my perspective as a patient, in our whole health care system. It doesn't matter whether you're paying for a doctor, or whether you're paying for the MRI, or whether you're paying for infusion, or whether you're paying for over-the-counter prescription drugs. We need a system where every American has access to affordable, comprehensive care — and we don't have that. It's a huge failing. And I don't care whether you like Obamacare, or you don't like Obamacare, or whether you think someone else could do something better … in some ways, I really don't care how we get there, as long as when we're done, we have comprehensive affordable care. Now, it is not comprehensive that they sell you a plan that doesn't cover pre-existing conditions, that doesn't cover certain kinds of diseases, or that has an annual limit on it that they will pay, or a lifetime limit. Those are not comprehensive programs. So if someone comes up to me who politically doesn't think the way I think, and says I think I have a way to get comprehensive, affordable care to everybody, and will make sure that folks get the coverage they need at prices they can afford, I say, “Tell me how, show me.” Because that's the key thing for me for health care, from my perspective.
Lauren: Does that look like the removal of corporate interest from healthcare entirely, do you think?
David: I think that's not doable in America. One of my sons who holds some political views very strongly, will argue with me vociferously about the need to get rid of for-profit healthcare, and have single payer. They do it all over the world, by the way. They also do hybrid systems all over the world. In Northern Europe and Scandinavia, they have systems that have the government collect and pay for care, but it's delivered through private sector organizations.
So it doesn't have to be all one way or all the other, but until you tell me that we are all covered with comprehensive, affordable health care, we have not succeeded.
Lauren: Absolutely. I mean, it's interesting when I ask about the removal of corporate interests, that your understanding from within the system here is that the money has to come from somewhere, right. And so it's more about the ethical involvement of corporate interest, it sounds like to me, rather than this gross for-profit system that we have going now, where you hear stories in the news … some of the biggest ones that we know about are the pricing for insulin, and pricing for AIDS prevention drugs, and HIV drugs. When we see price gouging of patients, and huge increases in these prices over short periods of time, that's when we really take notice. But then you're someone here who's dealing with that just to stay alive day-to-day. And if, as you say, you didn't have comprehensive health care … So it's really fascinating to me how that all shakes out. And you're absolutely right — until it's affordable for everyone.
David: Even, by the way, with the good care that I am fortunate to have … I have Medicare, I have a Medicare supplement, I have a prescription drug plan through Medicare — my out-of-pocket for one of those drugs, it's an oral drug called Pomalyst, is more than $15,000 a year; I have to pay out of my pocket. And that's in addition to my premiums and deductibles, and for all the other parts of healthcare. Even if we built a system that pulled government out of insurance, if you will … let’s say, Medicare for All … you would not be getting rid of the drug companies. They’d still be there. And you'd still have a situation as you just referenced with insulin … three drug companies control 90% of the global market for insulin. They are like a cartel. They are Sanofi, Eli Lilly and Novo Nordisk. And in the past 20 years, they have moved their drug prices in lockstep. One moves it, the other two move it. And they keep control of the prices for insulin, and we do not have competitive bio-similar generic insulins for people who need them. The net result is, the price of insulin has gone up 300% over a recent 10-year period. Why do they do that? Because they can. We let them do that. I don't think we're ever going to get rid of for-profit companies in all of healthcare, but where they’re for-profit, we need good protections and guardrails so that our system works for the people it's designed to serve. And it doesn't just work for them to maximize profits — which is how it works now.
Lauren: I'm wondering also, given your experience as a patient in this healthcare system, do you think that there's been some privilege or bias at play because of the way you present? Specifically showing up in the emergency room, going to different doctors’ appointments. Do you think being a white man, using the tools of the system, has given you any advantage in situations where you needed to be seen?
David: Well, in every other part of my life, I am the beneficiary of privilege. I will say something that I don't often say to anybody, but I'm going to say it to you today in this interview …
Lauren: Oh, goody.
David: My wife is mixed race. So my son is mixed race. My wife grew up very much in an African-American context. My wife has taught me a lot of things about the way the world really works! And the fact of the matter is, what is happening right now with COVID, the death rate among African-Americans is off the charts.
Lauren: It’s abysmal.
David: The rate among Hispanics is also elevated. And is that happening because they are at greater risk of the disease? Because they might have more high blood pressure? Why do they have more high blood pressure — are they not being treated properly so that pre-existing condition is rendering them at greater risk of death from COVID-19? Is it that they don't have good health care to begin with; that when they access the system, it didn't work as well for them?
I am well aware of the fact that I can afford the care I need.
It's painful at times, honestly. But I can afford the care I need. I can get on an airplane twice a year and fly to Boston to see the finest specialist, I think in the world, for multiple myeloma. And it's partly because of my entire life as a white man. And I know that … you know, I know … that outcomes are different for people who do not have access to the same resources. I sometimes talk to other patients around the country … I’ll never forget a patient who I talked with, who lived down in Louisiana. A friend called me and said, “Will you call him and talk to him?” He was on Medicaid. The struggles … now, you have wonderful doctors, and the doctors, when he got to them, were terrific. But the struggles that he had accessing the system … I just said, “Well, tell them you want to do this.” And it wasn't that simple for him. Because of the barriers that he encountered.
Lauren: He was a person of color, I imagine.
David: Yes, he was African-American. So all I can say is that my situation as an older white male, in patient land, is the same as it is everywhere else in my world.
Lauren: But I think it's important here to have someone of the utmost privilege acknowledging that privilege. It’s a really important step in beginning to see where the privilege occurs, see where the lack of privilege occurs, and be able to address that, and try to create equality across the board, which is part of your mission. And it's very refreshing to hear that you are plugged into these other stories and understanding of the plight that other people are living through, especially at the head of an organization that's working to help patients. It’s very reassuring to know that there's somebody who sees the bigger picture here. I think it's important for people to understand that as well. I'm wondering, given that question of privilege, and given that you're living with what is an invisible illness … to the naked eye, you're just a regular guy … have you also ever been in a position where you've been confronted and forced to justify the existence of your illness to others?
David: No, I'm lucky in that regard, because nobody knows what causes multiple myeloma. If they did, they probably find a way to blame me for it. Some people would, not all people. It's a mystery. So they can't say, “Oh, you smoked, and you got lung cancer.” “Oh, you were overweight, so you've got diabetes.” “Oh, you didn't take care of your physical health in other ways, and so you have high blood pressure.” You know, that stuff. Blaming people for being sick. It infuriates me. If we were all perfect, it would be different.
Lauren: But we're not robots.
David: No. And we're people who struggle with you different challenges.
I'm also a recovering alcoholic for 35 years. So that they would blame me for; I know what it's like to be blamed.
That's interesting. You're making me think about things that I don't often think about, certainly don't talk about! But the stigma that attaches to addiction is tremendous.
Lauren: You compare that to cancer, it's a very different story.
David: A whole different thing. It's one of the reasons that Alcoholics Anonymous is still anonymous. Because it can be a real barrier for people who are in recovery. I have experienced having to do a little tiptoe dance with that illness that I have. And I believe alcoholism and drug addiction are diseases.
Lauren: I couldn't agree more. And I'm really very happy that you've brought it up, too, because it's interesting that you're living with two different invisible illnesses. Yet you're still managing day-to-day, but that are perceived from the outside in two very different ways.
David: Completely different ways. And I'll tell you, if they knew the etiology, if they knew the cause of multiple myeloma, some people would probably say, “You did this to yourself.”
Lauren: And when will we understand that nobody really wants to hurt themselves? Well, most people don't want to.
David: No, but then you're talking about even a different health issue.
Lauren: Mental health issues, yes, absolutely. And it is this never-ending spiral of blame, as you mentioned, of stigma, depending on what you're dealing with. And it's interesting that you've got a cancer, as you say, that no one can place blame on a particular area of your life and the way that you've lived it. But you live in these two disparate, and yet very much the same, spaces. That's quite an interesting dichotomy to be living with, I think.
David: Well, and the ability to be able to have both, manage both, and then know that if I walked into a room and started announcing to people that I’m alcoholic, somebody in that room is going to say, “Yeah, that’s your fault." But as soon as I say I have an incurable blood cancer, and nobody knows what causes it, it's all sympathy. If they're listening, Most people don't listen that much.
Lauren: That’s part of it, too, isn't it. How much are people interested in other people's stories? And our job is to make them important.
David: Yeah. Someone once said to me, we wouldn't care so much what people think about us, if we knew how seldom they did.
Lauren: Yeah. That’s pretty powerful, isn't it.
Lauren: It’s freeing, and yet also terrifying! Well, we're gonna head into the last couple of questions, the end portion of our interview. And I wondered if there’s anything you wanted to add before we get you into some Top Three lists, because we've talked about so much today.
David: I would like to add something, if you will allow me. I would like to give a little commercial for Patients for Affordable Drugs.
Lauren: Oh, absolutely. And tell everyone where to find you.
David: We don't try to raise money from patients; we go to foundations, my wife and I kick in. And sometimes people send us money. But we don't ask people for money.
The only thing we ask people for is their story, and their email address, so that we can engage them in our community. Because their story is our power.
So you know, if people are listening, and they can go to PatientsForAffordableDrugs.org, leave their story, leave their email address, get on our SMS text distribution. We don't ask much; we send an email maybe once a week. Occasionally, we say, “Hey, will you push this button and send a letter to your elected official?”
Lauren: And that's a great way to be engaged civically without having to do too much. They're making it easy for you; you’re on the same page, you can just click a button.
David: That’s what it is. And yet for us, we could not do our work without the stories and without the people who are willing to do that. And so that's our currency. That's our stock in trade. And so if people are listening and they're interested in the issue, it's a very low lift. That's not good English! We won't ask much. But for us, it means a great deal. All right, I’m ready!
Lauren: All right. Well, let's get into the Top Three. I have two Top Three lists for you. Number one is, what are your Top Three Tips for someone who's entering this world, be it stigmatized or otherwise, of invisible chronic illness. It could be someone who already has a diagnosis; it could be someone who's in the course of looking for the diagnosis. What are your top tips for a new patient navigating this life of chronic illness?
David: First, have an advocate — and advocate for yourself. You may be doing it; she or he may be doing it. But the system doesn't work all by itself, even with the best doctors and nurses. You have to be an advocate. And you have to ask questions, you have to push. Don't take ‘no’ for an answer necessarily.
Lauren: Sounds like it also involves, you can seek a second opinion as well.
David: I tell all the multiple myeloma patients: You have to go have a second opinion. And the reason you have to go have a second opinion is because only about 33,000 people will be diagnosed with multiple myeloma this year. It truly is an orphan disease; small population, only about 100,000 alive at any given point in time. So you really want to go places … there's lots of research that shows the more of a procedure or the more patients a physician treats, the better their outcomes are. They’re better at it! They have more practice! They have more access to data. And so always go for a second opinion, and go somewhere where they specialize in your condition. You may go home and work with your community oncologist; I go to my community oncologist every two weeks for infusion. Because I can't go to Boston for that. So, get that second opinion and then put it to work in your care, and be an advocate … I had these all lined up in my head. And they went away.
Lauren: That happens, too! Forgive yourself, perhaps?!
David: This is kind of spiritual, a little touchy-feely …
Lauren: Go for it, we love that.
David: Try and find what you're grateful for in the midst of it all.
I am very grateful to be able to do the work I'm doing, because it took a really bad card that I got dealt and it turned it into a useful card.
I got cancer, but having cancer has actually been useful in this work. And so when I go through my gratitude list, which I do just about every day … some days, I might spend more time on it than others … finding what I'm grateful for is very important to me keeping my head in a good place. And so I really am a big advocate; it's not hard, doesn't require any given religious point-of-view. You can do it no matter who you are, to try and look at what there is to be grateful for. It makes life better.
Lauren: There are studies that actually reinforce what you're saying, too. Meditation, gratitude.
David: Yeah, I believe it counts. And then, make sure that you find a physician or a nurse practitioner, or whatever it is that is your preference, who you decide that you want to steer by. Now that does not mean you don't get second opinions. But for my disease, multiple myeloma, there's an enormous amount of clinical variation around the country on how they treat it. I go to Mayo, and the doctor will recommend this approach. Another doctor down the hall might recommend a different approach. Go to Dana-Farber Cancer Institute in Boston, and they may recommend a different approach. There's a wild variation in the general standard of care. It was so overwhelming for us that one of the most peaceful things we did was to say, “This is the doctor we're going to put our faith in. This is the doctor we're going to steer by. This doctor will be our North Star.” And when we did that, it all got easier. Now, I love him, and I trust him completely. But I also have my community oncologist as a resource. I also know other myeloma doctors around the country now. So I will not hesitate to call and say, “Hey, what are you doing in this given situation?” By the way, the fact that I can do that is part of my privilege. My point is that we were able to let go of anxiety at the moment that we said … for now … we could change tomorrow … but for now, we're going to put ourselves into this person's hands and steer by him or her.
Lauren: And that level of trust and surrender, I think, is important, too, isn't it.
David: Yes, it is. It was for me. Especially because I'll read everything I can get my hands on and get myself completely confused. And all wrapped up and tangled up in my own thinking.
Lauren: Thanks, Google!
David: Yes, that's the downside.
Lauren: Absolutely. Information. All right, our final Top Three list. And this is always a fun one. I'm wondering what your Top Three things are in your life that give you unbridled joy. So things that you're unwilling to compromise on. Perhaps despite lifestyle changes, treatments … it can be guilty pleasures, secret indulgences, comfort activities. Just three things that fill you up, that you turn to for joy.
David: Well, my family, and in particular, vacations with my family. I have four children, 32, 30, 27 and 18. And when I'm on vacation with them … we try and take a vacation once a year together. And they're still good about coming. There's no grandchildren yet, which makes it easier. And when I'm on vacation with those four kids and my wife, and we're doing things together, it's the best. It's perfection. We go someplace where we hang out together, and we play board games. And we go sightseeing, and we go eat good food. We have a wonderful time together. That is unbridled joy for me.
Lauren: Favorite people doing fun things.
David: Yeah. So that's number one. Number two is, I will not give up my physical activity, my workouts. Why? Because I believe they are essential, first of all, to my physical health. But they do release endorphins. And I can feel crummy and get on the treadmill for 45 minutes, and burn a lot of calories.
And get off the treadmill, and I know those endorphins got pumping, because I feel better.
And so for the physical and emotional lift that I get, I make sure that that is in the day, and early. Because if I wait too late in the day, then I get lazy and I say oh, well, you know, find something else to do. Not a good idea.
Lauren: You figured yourself out.
David: It gives me great pleasure and it makes my life better. And then I would say … guilty pleasure, especially during the time of COVID is, after the day and after the dinner is cooked and the dishes are done, sitting down to binge on some really junk television and turn everything off is my current third guilty pleasure. And trash TV. It’s just time to like, let it be. My wife and I do that together. The 18-year-old is home now with us, and so the first show of the evening is usually one that he wants to watch because then he goes off to do his thing. And then we'll watch another show, and it's pure indulgence. I can't tell you that there's any redeeming …
Lauren: Well, it helps you unwind. And that's important.
Lauren: That’s wonderful. David, can you tell our listeners once more where they can find Patients for Affordable Drugs, and get involved
David: Patients for Affordable Drugs, just like it sounds, all one word … PatientsForAffordableDrugs.org. And if you come, I think the website is pretty easy to navigate. And if you have a story of you, or someone you know or love, struggling to pay for prescription drugs, we’ll take a story that's two sentences, or two paragraphs or two pages — we don't care. And if you're not a patient yourself, and you don't have a story, if you give us your email address, we'll connect you. And we would love to have you as a part of our community.
Lauren: David, it's been such an honor speaking to you today. I'm so glad we were able to arrange this.
David: Lauren, thank you for having me.
Lauren: Thank you. I’m so excited for everyone to hear more about your story, and to understand the heart that has been behind the creation of Patients for Affordable Drugs and to learn more about P4AD. So thank you so much for joining us on the show today. And for sharing so much of your personal story.
David: You pulled more out of me than most people!
Lauren: It’s my job! What can I say, David? It's the effect I have on people. (laughs) So thank you so much for sharing so much and so openly, and we look forward to continuing to follow your journey, as well as to seeing what you continue to shake up for the rest of us with our drug pricing.
David: Great. Thank you.