How to Buy a Cure

and simple. But somewhere along the line, healthcare became an incredibly complex and lucrative business. It's a world in which patients can feel unheard and lost, but increasingly some are making their voices known and fighting back. Welcome to Prognosis, a podcast about health, medical technology, and the mind blowing innovation under way across the globe. I'm your host, Michelle fe Cortes. Today, there are two major power centers in the drug world, those who make medicines and those who

pay for most of them. That's big pharma and insurers. These two camps often battle over how healthcare dollars in the US are spent. But where does that leave patients? People like you and me. We'll hear from patients who have taken matters into their own hands by helping pay for the development of treatments for their own disease. Patients are fighting for their lives, but while they're at it,

they're often helping the financial interests of drug companies. Companies have figured this out and are working to cultivate a new kind of booster, the patients themselves. Here's Bloomberg's biotech reporter Rebecca Spalding with the story. Here's how the drug industry works in a nutshell. Farmer makes money when sures cover their drugs, Ensures save money when they don't. That was the first thing I learned when I started covering the healthcare industry. The second thing I learned is a

little more difficult to understand. It's not always obvious who's on which side. I don't mean pharma and the insurers, that's easy. I mean all the people in between, hospitals, doctors, politicians, middlemen. The more you learn about the healthcare industry, the more you learn that there's a web of murky financial incentives that can tie actors to one side or the other. But one thing isn't murky. Patients often end up near the bottom of this power structure. That becomes clear when

someone gets seriously sick or needs an operation. What seems simple, I doctor's visit, a prescription, a hospital stay can feel like falling into a bottomless pit. Some patients find out their drugs will cost them thousands of dollars. For others, there's no drug for their condition at all. That's where people like Bob Coughlin come in. Bob is a lot of things. His history a politician. Now he works for the drug industry in the Massachusetts one of the biggest

industry clusters in the world. It's very clear who he is and what he's about. He has an agenda and he can't wait to tell you what it is. He's the CEO of the state's biotechnology trade group. But he's also a dad and a patient advocate. I'm a completely recovering politician. I served in elective office, and when I was in the legislature in Massachusetts, I got a first you know, firsthand. I was a front row seat as to weird policy intersected with science. And the reason that

was so important to me is because it's personal. Um, you know, when I was running for the legislature, my wife and I were having our third child, and we found out in utero when my wife was twenty one weeks pregnant, that that little baby in her belly was going to have cystic fibrosis. And it really shocked our world. It shocked us. It was horrible. It was the worst thing, you know, we've ever been through in our lives. And you know, I found myself as someone who wasn't a doctor.

I wasn't a scientist, you know what was I was a member of the legislature in Massachusetts and the most important thing to me was trying to find a cure for my kid. And I didn't want to go. I used to have nightmares about going to his funeral and I wanted that to stop. And um as a type of personality, I decided to get involved. And how could I get involved? I could really work with the biotech industry, the leaders of industry, to say what can government do

to do better? And this is this is where this all came about. Cystic Fibrosis is a deadly childhood lung disease. Back in two thousand two, Bob's son was diagnosed. It was a death sentence, a genetic defect leads to a build up a thick mucus in the lungs. It's harder and harder to breathe. Infections are common as patients age. Some patients die in their teens, others live longer. At the time Bob's son was diagnosed, the median age of

survival was about thirty two. You know, I remember when when I found out when we when Christine and I found out that we were going to have a kid with CF, a baby with CF. My first thought was, Okay, we got to find the doctors that are going to fix this, that are gonna come up with a cure. And I talked to some other folks from the CF community and they said, no, no, no. Most drugs don't

come out of government labs or university towers. To actually make a drug, kind of drug that Bob's son needs, you need a pharmaceutical company, and developing most drugs takes time, usually a decade, and on average costs about two and a half billion dollars. What's more, drug companies get to choose which diseases they research and which diseases they don't. And the sad reality is that some diseases are more profitable than others. Like so much else in our consumer culture,

diseases have brands, they have cachet cancer is hot. Everyone wants to cure for Alzheimer's. There's a liver disease that's particularly buzzy right now since it's tied to obesity, meaning there's plenty of patients. There's tons of pharmaceutical company backers and optimistic Wall Street analysts cheering them along the way.

At the time Bob's son was diagnosed, cystic fibrosis was not on the radar of the pharmaceutical industry, but it did have one powerful force that would set it apart from other diseases and would eventually make the industry pay attention patients and the parents of patients. People like Bob. A gentleman who's still a mentor to me and one of my heroes, told me, we're got to go out and raise money and buy a cure for your kid.

His son had passed away from cystic fibrosis, and he's dedicated to his son's legacy that he was going to continue to raise money until there was a cure so my son won't die. And when he said it was quite sobering. He said, you have to. We have to buy a cure. And I remember that like it was this morning, because who in their right mind would think that we have to buy cures? Back then, I thought doctors just did it. Scientists just did it. It was

the right thing to do. I didn't understand the whole business around it and how difficult it is to actually develop a therapy, never mind a cure. Bob is a lobbyist, but he's also it's known as a patient advocate. It's an idea that's been around for decades, patients fighting for themselves. But a more recent year, something else has happened. Remember that web of healthcare and sentence I mentioned, patients are in there too. The Cystic Fibrosis Foundation was founded in

nine by parents who watched their children die. They vowed to find a cure. Around that time, the average age of survival was about ten years old. They raised money and began funding basic academic research, but they still didn't have drugs at the time. Pharma wasn't interested to see a foundation decided they would have to get them interested. In two thousand, two years before Bob Soun was born,

the foundation made a controversial bet. Rather than fund academic research, It decided to invest forty million dollars in a small biotechnology company to find a cure for cystic fibrosis. That investment eventually turned into the first ever drugs approved that treat the underlying cause of the disease. Today, Vertex, the maker of those drugs, is a darling of Wall Street. Vertex Pharmaceuticals will be presenting new data on its cystic

fibrosis drugs next week. VerTech stock also rising today, and the company has high hopes for the drug and development. But it's not just that Vertex sells a successful drug, it also charges a lot for them, about three hundred thousand dollars a year. Drug prices have become a huge issue in the United States for many patients and politicians. That means railing against the drug companies that invented the products.

But not Bob. He's unapologetic about companies charging that much for their treatments, especially when it's the insurance companies that are picking up the tab. People talk about, oh, well, how can these companies make money off things that were invented in with within i H funding and hospitals and universities. Well, they'll sit on a shelf for decades and never turn into anything that could ever help a patient. If vcs don't get involved, investors get involved, business people get involved

and actually take that. You know, to use a football and analogy. The NIH funding and the science can get you on the field, but you're still gonna go ninety nine yards to get a touchdown to invent a drug. Well, that's what businesses do, and it cost money, and it's high risk, and there needs to be a reward to incentivize people to do that. And that's why a lot of people, especially in rear genetic disorders, parents will call

me and they're like, what can we do? Raise money in investing companies and buy a que for your kid? And again, it looks like there are deer in headlights when I say that, because nobody thinks that that's what you're supposed to do until it happens to them. At this point in our conversation, I'm wondering how that would even work buy a cure for your kid? How would someone actually go about buying a cure? And so is that really what when you're a patient or organized patient group?

Is that why patients organized? Or can you walk us through kind of more of that landscape, not just within the CF world, but other disease others you mentioned, Yeah, good Disease foundations focus on a few things. First and foremost awareness, Right, You're not going to raise money to invest if people aren't aware. Look what folks from the you know, breast cancer have done around awareness. It's beautiful. I mean, you raise awareness, then you can raise funds,

and then also patient support and policy and advocacy. Disease foundations need to support their community, give them access to information, give them access to support groups, give them access to you know, use them in a positive way. With politicians. Politicians, Hey, I was one, right, I listened to the people that live in my district, my constituents. I didn't want to meet with the CEOs from companies to hear what they wanted.

I wanted to meet with the people that that lived in my district that could vote me in office or vote me out of office. And I'm curious how that works because you mentioned, you know yourself, that if a patient came into your office when you're a legislator, I mean that's you want to talk to. You don't want to talk to the CEO of my own tech company.

But by virtue. It sort of seems like patients might be doing the marketing of some of these companies UM, and you know, they're the ones spreading awareness about the disease, doing basically free marketing, raising money even in the cases of CF and other diseases for these companies. The companies turn around and to your point, you know, these these treatments can cost hundreds of thousands of dollars, So do

patients help companies charge those those rates? Or I could see how a cynic would look at it that way. And again is speaking as a CF dad. I've sat with many CF patients and and CF families, most i should say, more CF moms and dads than patients. To explain that when a drug like UM, like Kaleitako, which was the first drug, was priced at you know, keep in mind this is before discount of rebates. That's a whole different animal that we can get into as it

relates to the future of healthcare. But let's say the list price was you know, three d thousand dollars. That's not in a sense to pay for Kalitako, that's to pay for the next drug. In other words, Vertex has invested over nine billion dollars to get to a point where they've got a drug for fift oft People think of the revenue model here. This is going to be expensive, and again it will save money to the health care system over time and costs avoided later. But we don't

have a payer system that tracks costs avoided. For all the money Bob is raised for disease research and the industry at large, his son still doesn't have a cure. Vertex has drugs only work in about half of all patients. The company is researching promising drug combinations it hopes will help reach more. Bob hopes they'll work for his son. That might be why he's not as concerned about what the current treatments cost. Vertex can charge as much as it wants as long as it keeps going. They don't

have one that works for my son's mutation yet. Hope to God, I think the next one will work. All night work, the triple will work for him. I'm so confident. I've never been this optimistic. They're confident. In the sixteen years that he's been alive, but the clock is ticking. He's not getting any healthier, so he gets sicker and

sicker every day, so we need this to happen. But let's go back to the therapies that existed, the chronic therapies, the antibiotics, the anti mucalytics, the CHESSPT, the constant clean outs in the hospital, the dozens, if not hundreds of pancreatic enzymes that these kids need to take every day just to eat food. These are expensive patients as and they still get sicker and sicker every day and ultimately die. You know, they ultimately need a transplant of sort, whether

it's a liver transplant like in my son's case. In most cases it gets to the point where they need a lung transplant, and then they die. And it's it's horrible. It's a horrible, horrible thing, and it's a very very expensive thing. It's it's difficult to talk about dollars and sense when you're thinking about a loved one's life. Remember some of those hidden incentives I mentioned at the beginning

of the episode, this is one of them. No matter how much patients may criticize high drug prices, the reality is that insurance companies don't develop drugs. Pharma does. If you're dying, it's a drug made by a drug company that might save your life. Pharma knows this, and they know that patients are a lot more sympathetic a voice than a CEO. That's why they give patient groups so

much funding. Kaiser Health News found that the pharmaceutical industry gave patient groups a hundred and sixteen million dollars in two thousand fifteen. The links are so interconnected that pharma companies now have whole divisions dedicated to patient advocacy. Just like press offices handle a company's relationships with reporters, patient advocacy divisions work with patients, the awareness that patients raise,

the meanings they arrange with politicians. It is like the one Bob mentioned that helps patients, but it also helps pharma. Ever go on a walk or run that benefits disease research next time, look at who the sponsors are. You may be surprised to see if pharmaceutical company listed the generous sponsors who make this possible. Here today, this this event has grown so much over the last five years that we have to have it in a hotel now. We couldn't fit in another space, and we couldn't do

it without our sponsors. For you folks that are trying to log onto the Internet. The password is actually Surrepta is hiring capital s. There is no periods in there. And how ironic is it that the password name is actually that Surreptor is hiring. Like, take it. That's a sponsoring opportunity right there. It's pretty clever. Ladies and gentlemen, please, that's Bob. A few weeks after I spoke to him, presiding over an industry conference about how to best work

with patients. The summit was held at a hotel and Cambridge and sponsored by some of the largest biotechnology companies in town. Drug executives mingled with disease advocates over pastries and artisanal coffee. If I hadn't already known about the ties, the scene might have struck me as bizarre. One of the patient advocates who spoke at the meeting you just heard was a woman named Laura Greco. Laura used to be a lawyer. She's in her forties and has two

children at home. A few years ago, she learned she had lung cancer. Laura never smoked, but she resents the fact that that's usually the first question she's asked when she tells people her diagnosis. Even if she did smoke. Does that mean she deserves to die? Nobody wants cancer, But if all the cancers out there long as high on the list of bad ones, many cases, it's a

death sentence. Laura wants to change that by doing many of the things that the cystic fibrosis community once did, raise awareness about the disease and fund basic research to help make pharma pay more attention. In a way, I thank god for the pharmaceutical companies because UM, lung cancer has historically been ignored by our federal government. Lung cancer is responsible for of all cancer deess and yet receives

only six percent of federal funding. So re word for pharma. UM. Seeing the huge potential of what is a lung cancer, I don't think I'd be alive today, you know. I'm very thankful to them on the one hand. On the

other hand, they're obviously problems, right. I mean, the drug I'm on is about fifteen a long, which is a lot of money, And of course my insurance does cover it, and there's a co paid cards, so I pay five dollars a month, No big deal, right, But UM, if I were in Medicare or Medicaid, I would pay a lot more than that. That doesn't strike me as very fair, and it doesn't strike me as a viable economic model to charge someone you know, over a hundred thousand dollars

a year for a drug to keep them alive. But she has some words for drug executives, and she wasn't afraid to share them when she was on the panel at the Patient's Summit in Cambridge, like about how expensive it is for patients like her to participate in the clinical studies pharma so desperately needs. You know, Boston is

not cheap. I think you got to know that every time we come here in seven hundreds, not thousands of dollars, and none of that is compensated by the trials and in matas I've been told there's a law about this. Let's change that um clinical trial participate travel costs and at earlier in SPAT should begin to page on clinical trials. It's you know, heart time valuable and certainly we should

reimburse just for our costs and getting there. As she speaks, advising on everything from how to share clinical trial results to not patronizing patients by handing out magnets, I noticed executives around the room taking out their notebooks and writing down her advice. After the panel, I spoke to Laura outside the hotel asked her what her thoughts were on the pharmaceutical industry. In part, she's grateful to them because they developed the drugs she's on, but another part of

her thinks they don't really get it. Offering her a magnet when she's a stage for a lung cancer patient is not the kind of engagement she's looking for. She wants better drugs, more funding, more research. My end goal is to live. My end goal is to survive. That's

really the ultimate goal. UM. But you know, barring living, UM, I still think I'll be successful if I am able to look at my kids and say, look, I tried everything I could to be alive, and I hopefully move that needle so that parents who get a lung cancer diagnosis UM sometime in the future aren't quite as devastated

as I was when I was diagnosed. I mean, it's still probably going to be the worst day of their life, but maybe one day, UM, and one day soon, someone can be diagnosed with lung cancer and not be the

death sentence it usually is. That's Bob's goal too. I think patients do help companies succeed when they should because it's in their own it's in my son's best interest for me to help any company that is doing CF research and hopefully, you know, these drugs get priced right that will in a way that will help the companies get the money they invested back plus a reasonable and I say reasonable profit and still allow enough money for

future investment for the next drug. If if Kaletko wasn't successful in our comedy, wasn't successful, and Samedko wasn't successful, my kid wouldn't have a drug out of Vertex. And hey, I don't maybe I sound selfish, but I got into this to help my own kid, and I'm not going to stop until there's something for him. And that's it for this week's prognosis. This season, we've been exploring the edge of innovation in medicine. It's not limited to one group.

A revolution is underway in pharmaceutical laboratories, sure, but also on people's kitchen tables and in their garages. Whether you're interested in rare diseases that affect one in a million people or the genes found in everyone, change is coming. Thank you so much for listening. To Prognosis. This is the last episode in our series. If you like the show, please head on over to Apple Podcasts or wherever you listen to rate and review us. It is so helpful.

If you've listened to all eight episodes, awesome, thanks so much. If you haven't, please go back and check them out. Let us know what you think. We're still deep into healthcare and you can see what we're up to on Bloomberg's Prognosis page. That's bloomberg dot com slash prognosis. This episode was produced by Lindsay Cratterwell. Our story editor was Drew Armstrong. Thanks also to Liz Smith, francesco Leavia's head of Bloomberg Podcasts. Thanks for being with us.