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Speaker 1: We spend one and a half times more per person

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Speaker 1: on healthcare than any other country, but we aren't any

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Speaker 1: healthier for it. This is one of the reasons that

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Speaker 1: insurance preimus have gone up three times faster than wages.

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Speaker 1: That's why so many employers, especially small businesses, are forcing

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Speaker 1: their employees to pay more for insurance warror dropping the coverage.

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Speaker 1: It used to seem so easy, a trip to the

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Speaker 1: doctor's office, a prescription, sometimes a hospital stay. Healthcare plain

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Speaker 1: and simple. But somewhere along the line, healthcare became an

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Speaker 1: incredibly complex and lucrative business. It's a world in which

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Speaker 1: patients can feel unheard and lost, but increasingly some are

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Speaker 1: making their voices known and fighting back. Welcome to Prognosis,

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Speaker 1: a podcast about health, medical technology, and the mind blowing

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Speaker 1: innovation under way across the globe. I'm your host, Michelle

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Speaker 1: fe Cortes. Today, there are two major power centers in

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Speaker 1: the drug world, those who make medicines and those who

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Speaker 1: pay for most of them. That's big pharma and insurers.

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Speaker 1: These two camps often battle over how healthcare dollars in

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Speaker 1: the US are spent. But where does that leave patients?

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Speaker 1: People like you and me. We'll hear from patients who

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Speaker 1: have taken matters into their own hands by helping pay

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Speaker 1: for the development of treatments for their own disease. Patients

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Speaker 1: are fighting for their lives, but while they're at it,

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Speaker 1: they're often helping the financial interests of drug companies. Companies

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Speaker 1: have figured this out and are working to cultivate a

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Speaker 1: new kind of booster, the patients themselves. Here's Bloomberg's biotech

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Speaker 1: reporter Rebecca Spalding with the story. Here's how the drug

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Speaker 1: industry works in a nutshell. Farmer makes money when sures

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Speaker 1: cover their drugs, Ensures save money when they don't. That

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Speaker 1: was the first thing I learned when I started covering

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Speaker 1: the healthcare industry. The second thing I learned is a

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Speaker 1: little more difficult to understand. It's not always obvious who's

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Speaker 1: on which side. I don't mean pharma and the insurers,

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Speaker 1: that's easy. I mean all the people in between, hospitals, doctors, politicians, middlemen.

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Speaker 1: The more you learn about the healthcare industry, the more

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Speaker 1: you learn that there's a web of murky financial incentives

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Speaker 1: that can tie actors to one side or the other.

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Speaker 1: But one thing isn't murky. Patients often end up near

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Speaker 1: the bottom of this power structure. That becomes clear when

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Speaker 1: someone gets seriously sick or needs an operation. What seems simple,

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Speaker 1: I doctor's visit, a prescription, a hospital stay can feel

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Speaker 1: like falling into a bottomless pit. Some patients find out

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Speaker 1: their drugs will cost them thousands of dollars. For others,

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Speaker 1: there's no drug for their condition at all. That's where

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Speaker 1: people like Bob Coughlin come in. Bob is a lot

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Speaker 1: of things. His history a politician. Now he works for

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Speaker 1: the drug industry in the Massachusetts one of the biggest

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Speaker 1: industry clusters in the world. It's very clear who he

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Speaker 1: is and what he's about. He has an agenda and

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Speaker 1: he can't wait to tell you what it is. He's

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Speaker 1: the CEO of the state's biotechnology trade group. But he's

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Speaker 1: also a dad and a patient advocate. I'm a completely

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Speaker 1: recovering politician. I served in elective office, and when I

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Speaker 1: was in the legislature in Massachusetts, I got a first

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Speaker 1: you know, firsthand. I was a front row seat as

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Speaker 1: to weird policy intersected with science. And the reason that

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Speaker 1: was so important to me is because it's personal. Um,

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Speaker 1: you know, when I was running for the legislature, my

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Speaker 1: wife and I were having our third child, and we

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Speaker 1: found out in utero when my wife was twenty one

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Speaker 1: weeks pregnant, that that little baby in her belly was

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Speaker 1: going to have cystic fibrosis. And it really shocked our world.

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Speaker 1: It shocked us. It was horrible. It was the worst thing,

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Speaker 1: you know, we've ever been through in our lives. And

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Speaker 1: you know, I found myself as someone who wasn't a doctor.

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Speaker 1: I wasn't a scientist, you know what was I was

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Speaker 1: a member of the legislature in Massachusetts and the most

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Speaker 1: important thing to me was trying to find a cure

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Speaker 1: for my kid. And I didn't want to go. I

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Speaker 1: used to have nightmares about going to his funeral and

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Speaker 1: I wanted that to stop. And um as a type

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Speaker 1: of personality, I decided to get involved. And how could

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Speaker 1: I get involved? I could really work with the biotech industry,

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Speaker 1: the leaders of industry, to say what can government do

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Speaker 1: to do better? And this is this is where this

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Speaker 1: all came about. Cystic Fibrosis is a deadly childhood lung disease.

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Speaker 1: Back in two thousand two, Bob's son was diagnosed. It

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Speaker 1: was a death sentence, a genetic defect leads to a

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Speaker 1: build up a thick mucus in the lungs. It's harder

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Speaker 1: and harder to breathe. Infections are common as patients age.

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Speaker 1: Some patients die in their teens, others live longer. At

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Speaker 1: the time Bob's son was diagnosed, the median age of

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Speaker 1: survival was about thirty two. You know, I remember when

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Speaker 1: when I found out when we when Christine and I

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Speaker 1: found out that we were going to have a kid

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Speaker 1: with CF, a baby with CF. My first thought was, Okay,

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Speaker 1: we got to find the doctors that are going to

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Speaker 1: fix this, that are gonna come up with a cure.

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Speaker 1: And I talked to some other folks from the CF

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Speaker 1: community and they said, no, no, no. Most drugs don't

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Speaker 1: come out of government labs or university towers. To actually

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Speaker 1: make a drug, kind of drug that Bob's son needs,

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Speaker 1: you need a pharmaceutical company, and developing most drugs takes time,

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Speaker 1: usually a decade, and on average costs about two and

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Speaker 1: a half billion dollars. What's more, drug companies get to

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Speaker 1: choose which diseases they research and which diseases they don't.

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Speaker 1: And the sad reality is that some diseases are more

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Speaker 1: profitable than others. Like so much else in our consumer culture,

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Speaker 1: diseases have brands, they have cachet cancer is hot. Everyone

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Speaker 1: wants to cure for Alzheimer's. There's a liver disease that's

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Speaker 1: particularly buzzy right now since it's tied to obesity, meaning

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Speaker 1: there's plenty of patients. There's tons of pharmaceutical company backers

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Speaker 1: and optimistic Wall Street analysts cheering them along the way.

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Speaker 1: At the time Bob's son was diagnosed, cystic fibrosis was

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Speaker 1: not on the radar of the pharmaceutical industry, but it

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Speaker 1: did have one powerful force that would set it apart

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Speaker 1: from other diseases and would eventually make the industry pay

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Speaker 1: attention patients and the parents of patients. People like Bob.

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Speaker 1: A gentleman who's still a mentor to me and one

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Speaker 1: of my heroes, told me, we're got to go out

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Speaker 1: and raise money and buy a cure for your kid.

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Speaker 1: His son had passed away from cystic fibrosis, and he's

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Speaker 1: dedicated to his son's legacy that he was going to

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Speaker 1: continue to raise money until there was a cure so

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Speaker 1: my son won't die. And when he said it was

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Speaker 1: quite sobering. He said, you have to. We have to

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Speaker 1: buy a cure. And I remember that like it was

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Speaker 1: this morning, because who in their right mind would think

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Speaker 1: that we have to buy cures? Back then, I thought

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Speaker 1: doctors just did it. Scientists just did it. It was

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Speaker 1: the right thing to do. I didn't understand the whole

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Speaker 1: business around it and how difficult it is to actually

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Speaker 1: develop a therapy, never mind a cure. Bob is a lobbyist,

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Speaker 1: but he's also it's known as a patient advocate. It's

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Speaker 1: an idea that's been around for decades, patients fighting for themselves.

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Speaker 1: But a more recent year, something else has happened. Remember

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Speaker 1: that web of healthcare and sentence I mentioned, patients are

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Speaker 1: in there too. The Cystic Fibrosis Foundation was founded in

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Speaker 1: nine by parents who watched their children die. They vowed

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Speaker 1: to find a cure. Around that time, the average age

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Speaker 1: of survival was about ten years old. They raised money

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Speaker 1: and began funding basic academic research, but they still didn't

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Speaker 1: have drugs at the time. Pharma wasn't interested to see

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Speaker 1: a foundation decided they would have to get them interested.

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Speaker 1: In two thousand, two years before Bob Soun was born,

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Speaker 1: the foundation made a controversial bet. Rather than fund academic research,

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Speaker 1: It decided to invest forty million dollars in a small

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Speaker 1: biotechnology company to find a cure for cystic fibrosis. That

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Speaker 1: investment eventually turned into the first ever drugs approved that

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Speaker 1: treat the underlying cause of the disease. Today, Vertex, the

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Speaker 1: maker of those drugs, is a darling of Wall Street.

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Speaker 1: Vertex Pharmaceuticals will be presenting new data on its cystic

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Speaker 1: fibrosis drugs next week. VerTech stock also rising today, and

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Speaker 1: the company has high hopes for the drug and development.

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Speaker 1: But it's not just that Vertex sells a successful drug,

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Speaker 1: it also charges a lot for them, about three hundred

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Speaker 1: thousand dollars a year. Drug prices have become a huge

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Speaker 1: issue in the United States for many patients and politicians.

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Speaker 1: That means railing against the drug companies that invented the products.

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Speaker 1: But not Bob. He's unapologetic about companies charging that much

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Speaker 1: for their treatments, especially when it's the insurance companies that

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Speaker 1: are picking up the tab. People talk about, oh, well,

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Speaker 1: how can these companies make money off things that were

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Speaker 1: invented in with within i H funding and hospitals and universities. Well,

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Speaker 1: they'll sit on a shelf for decades and never turn

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Speaker 1: into anything that could ever help a patient. If vcs

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Speaker 1: don't get involved, investors get involved, business people get involved

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Speaker 1: and actually take that. You know, to use a football

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Speaker 1: and analogy. The NIH funding and the science can get

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Speaker 1: you on the field, but you're still gonna go ninety

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Speaker 1: nine yards to get a touchdown to invent a drug. Well,

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Speaker 1: that's what businesses do, and it cost money, and it's

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Speaker 1: high risk, and there needs to be a reward to

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Speaker 1: incentivize people to do that. And that's why a lot

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Speaker 1: of people, especially in rear genetic disorders, parents will call

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Speaker 1: me and they're like, what can we do? Raise money

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Speaker 1: in investing companies and buy a que for your kid?

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Speaker 1: And again, it looks like there are deer in headlights

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Speaker 1: when I say that, because nobody thinks that that's what

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Speaker 1: you're supposed to do until it happens to them. At

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Speaker 1: this point in our conversation, I'm wondering how that would

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Speaker 1: even work buy a cure for your kid? How would

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Speaker 1: someone actually go about buying a cure? And so is

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Speaker 1: that really what when you're a patient or organized patient group?

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Speaker 1: Is that why patients organized? Or can you walk us

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Speaker 1: through kind of more of that landscape, not just within

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Speaker 1: the CF world, but other disease others you mentioned, Yeah,

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Speaker 1: good Disease foundations focus on a few things. First and

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Speaker 1: foremost awareness, Right, You're not going to raise money to

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Speaker 1: invest if people aren't aware. Look what folks from the

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Speaker 1: you know, breast cancer have done around awareness. It's beautiful.

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Speaker 1: I mean, you raise awareness, then you can raise funds,

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Speaker 1: and then also patient support and policy and advocacy. Disease

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Speaker 1: foundations need to support their community, give them access to information,

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Speaker 1: give them access to support groups, give them access to

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Speaker 1: you know, use them in a positive way. With politicians. Politicians, Hey,

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Speaker 1: I was one, right, I listened to the people that

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Speaker 1: live in my district, my constituents. I didn't want to

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Speaker 1: meet with the CEOs from companies to hear what they wanted.

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Speaker 1: I wanted to meet with the people that that lived

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Speaker 1: in my district that could vote me in office or

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Speaker 1: vote me out of office. And I'm curious how that

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Speaker 1: works because you mentioned, you know yourself, that if a

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Speaker 1: patient came into your office when you're a legislator, I

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Speaker 1: mean that's you want to talk to. You don't want

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Speaker 1: to talk to the CEO of my own tech company.

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Speaker 1: But by virtue. It sort of seems like patients might

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Speaker 1: be doing the marketing of some of these companies UM,

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Speaker 1: and you know, they're the ones spreading awareness about the disease,

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Speaker 1: doing basically free marketing, raising money even in the cases

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Speaker 1: of CF and other diseases for these companies. The companies

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Speaker 1: turn around and to your point, you know, these these

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Speaker 1: treatments can cost hundreds of thousands of dollars, So do

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Speaker 1: patients help companies charge those those rates? Or I could

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Speaker 1: see how a cynic would look at it that way.

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Speaker 1: And again is speaking as a CF dad. I've sat

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Speaker 1: with many CF patients and and CF families, most i

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Speaker 1: should say, more CF moms and dads than patients. To

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Speaker 1: explain that when a drug like UM, like Kaleitako, which

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Speaker 1: was the first drug, was priced at you know, keep

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Speaker 1: in mind this is before discount of rebates. That's a

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Speaker 1: whole different animal that we can get into as it

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Speaker 1: relates to the future of healthcare. But let's say the

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Speaker 1: list price was you know, three d thousand dollars. That's

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Speaker 1: not in a sense to pay for Kalitako, that's to

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Speaker 1: pay for the next drug. In other words, Vertex has

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Speaker 1: invested over nine billion dollars to get to a point

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Speaker 1: of the revenue model here. This is going to be expensive,

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Speaker 1: and again it will save money to the health care

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Speaker 1: system over time and costs avoided later. But we don't

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Speaker 1: have a payer system that tracks costs avoided. For all

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Speaker 1: the money Bob is raised for disease research and the

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Speaker 1: industry at large, his son still doesn't have a cure.

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Speaker 1: Vertex has drugs only work in about half of all patients.

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Speaker 1: The company is researching promising drug combinations it hopes will

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Speaker 1: help reach more. Bob hopes they'll work for his son.

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Speaker 1: That might be why he's not as concerned about what

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Speaker 1: the current treatments cost. Vertex can charge as much as

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Speaker 1: it wants as long as it keeps going. They don't

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Speaker 1: have one that works for my son's mutation yet. Hope

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Speaker 1: to God, I think the next one will work. All

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Speaker 1: night work, the triple will work for him. I'm so confident.

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Speaker 1: I've never been this optimistic. They're confident. In the sixteen

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Speaker 1: years that he's been alive, but the clock is ticking.

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Speaker 1: He's not getting any healthier, so he gets sicker and

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Speaker 1: sicker every day, so we need this to happen. But

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Speaker 1: let's go back to the therapies that existed, the chronic therapies,

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Speaker 1: the antibiotics, the anti mucalytics, the CHESSPT, the constant clean

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Speaker 1: outs in the hospital, the dozens, if not hundreds of

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Speaker 1: pancreatic enzymes that these kids need to take every day

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Speaker 1: just to eat food. These are expensive patients as and

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Speaker 1: they still get sicker and sicker every day and ultimately die.

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Speaker 1: You know, they ultimately need a transplant of sort, whether

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Speaker 1: it's a liver transplant like in my son's case. In

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Speaker 1: most cases it gets to the point where they need

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Speaker 1: a lung transplant, and then they die. And it's it's horrible.

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Speaker 1: It's a horrible, horrible thing, and it's a very very

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Speaker 1: expensive thing. It's it's difficult to talk about dollars and

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Speaker 1: sense when you're thinking about a loved one's life. Remember

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Speaker 1: some of those hidden incentives I mentioned at the beginning

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Speaker 1: of the episode, this is one of them. No matter

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Speaker 1: how much patients may criticize high drug prices, the reality

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Speaker 1: is that insurance companies don't develop drugs. Pharma does. If

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Speaker 1: you're dying, it's a drug made by a drug company

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Speaker 1: that might save your life. Pharma knows this, and they

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Speaker 1: know that patients are a lot more sympathetic a voice

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Speaker 1: than a CEO. That's why they give patient groups so

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Speaker 1: much funding. Kaiser Health News found that the pharmaceutical industry

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Speaker 1: gave patient groups a hundred and sixteen million dollars in

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Speaker 1: two thousand fifteen. The links are so interconnected that pharma

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Speaker 1: companies now have whole divisions dedicated to patient advocacy. Just

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Speaker 1: like press offices handle a company's relationships with reporters, patient

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Speaker 1: advocacy divisions work with patients, the awareness that patients raise,

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Speaker 1: the meanings they arrange with politicians. It is like the

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Speaker 1: one Bob mentioned that helps patients, but it also helps pharma.

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Speaker 1: Ever go on a walk or run that benefits disease

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Speaker 1: research next time, look at who the sponsors are. You

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Speaker 1: may be surprised to see if pharmaceutical company listed the

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Speaker 1: generous sponsors who make this possible. Here today, this this

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Speaker 1: event has grown so much over the last five years

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Speaker 1: that we have to have it in a hotel now.

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Speaker 1: We couldn't fit in another space, and we couldn't do

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Speaker 1: it without our sponsors. For you folks that are trying

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Speaker 1: to log onto the Internet. The password is actually Surrepta

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Speaker 1: is hiring capital s. There is no periods in there.

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Speaker 1: And how ironic is it that the password name is

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Speaker 1: actually that Surreptor is hiring. Like, take it. That's a

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Speaker 1: sponsoring opportunity right there. It's pretty clever. Ladies and gentlemen, please,

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Speaker 1: that's Bob. A few weeks after I spoke to him,

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Speaker 1: presiding over an industry conference about how to best work

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Speaker 1: with patients. The summit was held at a hotel and

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Speaker 1: Cambridge and sponsored by some of the largest biotechnology companies

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Speaker 1: in town. Drug executives mingled with disease advocates over pastries

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Speaker 1: and artisanal coffee. If I hadn't already known about the ties,

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Speaker 1: the scene might have struck me as bizarre. One of

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Speaker 1: the patient advocates who spoke at the meeting you just

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Speaker 1: heard was a woman named Laura Greco. Laura used to

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Speaker 1: be a lawyer. She's in her forties and has two

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Speaker 1: children at home. A few years ago, she learned she

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Speaker 1: had lung cancer. Laura never smoked, but she resents the

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Speaker 1: fact that that's usually the first question she's asked when

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Speaker 1: she tells people her diagnosis. Even if she did smoke.

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Speaker 1: Does that mean she deserves to die? Nobody wants cancer,

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Speaker 1: But if all the cancers out there long as high

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Speaker 1: on the list of bad ones, many cases, it's a

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Speaker 1: death sentence. Laura wants to change that by doing many

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Speaker 1: of the things that the cystic fibrosis community once did,

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Speaker 1: raise awareness about the disease and fund basic research to

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Speaker 1: help make pharma pay more attention. In a way, I

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Speaker 1: thank god for the pharmaceutical companies because UM, lung cancer

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Speaker 1: has historically been ignored by our federal government. Lung cancer

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Speaker 1: is responsible for of all cancer deess and yet receives

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Speaker 1: only six percent of federal funding. So re word for pharma. UM.

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Speaker 1: Seeing the huge potential of what is a lung cancer,

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Speaker 1: I don't think I'd be alive today, you know. I'm

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Speaker 1: very thankful to them on the one hand. On the

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Speaker 1: other hand, they're obviously problems, right. I mean, the drug

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Speaker 1: I'm on is about fifteen a long, which is a

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Speaker 1: lot of money, And of course my insurance does cover it,

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Speaker 1: and there's a co paid cards, so I pay five

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Speaker 1: dollars a month, No big deal, right, But UM, if

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Speaker 1: I were in Medicare or Medicaid, I would pay a

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Speaker 1: lot more than that. That doesn't strike me as very fair,

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Speaker 1: and it doesn't strike me as a viable economic model

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Speaker 1: to charge someone you know, over a hundred thousand dollars

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Speaker 1: a year for a drug to keep them alive. But

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Speaker 1: she has some words for drug executives, and she wasn't

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Speaker 1: afraid to share them when she was on the panel

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Speaker 1: at the Patient's Summit in Cambridge, like about how expensive

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Speaker 1: it is for patients like her to participate in the

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Speaker 1: clinical studies pharma so desperately needs. You know, Boston is

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Speaker 1: not cheap. I think you got to know that every

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Speaker 1: time we come here in seven hundreds, not thousands of dollars,

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Speaker 1: and none of that is compensated by the trials and

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Speaker 1: in matas I've been told there's a law about this.

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Speaker 1: Let's change that um clinical trial participate travel costs and

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Speaker 1: at earlier in SPAT should begin to page on clinical trials.

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Speaker 1: It's you know, heart time valuable and certainly we should

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Speaker 1: reimburse just for our costs and getting there. As she speaks,

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Speaker 1: advising on everything from how to share clinical trial results

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Speaker 1: to not patronizing patients by handing out magnets, I noticed

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Speaker 1: executives around the room taking out their notebooks and writing

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Speaker 1: down her advice. After the panel, I spoke to Laura

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Speaker 1: outside the hotel asked her what her thoughts were on

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Speaker 1: the pharmaceutical industry. In part, she's grateful to them because

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Speaker 1: they developed the drugs she's on, but another part of

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Speaker 1: her thinks they don't really get it. Offering her a

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Speaker 1: magnet when she's a stage for a lung cancer patient

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Speaker 1: is not the kind of engagement she's looking for. She

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Speaker 1: wants better drugs, more funding, more research. My end goal

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Speaker 1: is to live. My end goal is to survive. That's

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Speaker 1: really the ultimate goal. UM. But you know, barring living, UM,

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Speaker 1: I still think I'll be successful if I am able

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Speaker 1: to look at my kids and say, look, I tried

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Speaker 1: everything I could to be alive, and I hopefully move

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Speaker 1: that needle so that parents who get a lung cancer

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Speaker 1: diagnosis UM sometime in the future aren't quite as devastated

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Speaker 1: as I was when I was diagnosed. I mean, it's

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Speaker 1: still probably going to be the worst day of their life,

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Speaker 1: but maybe one day, UM, and one day soon, someone

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Speaker 1: can be diagnosed with lung cancer and not be the

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Speaker 1: death sentence it usually is. That's Bob's goal too. I

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Speaker 1: think patients do help companies succeed when they should because

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Speaker 1: it's in their own it's in my son's best interest

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Speaker 1: for me to help any company that is doing CF

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Speaker 1: research and hopefully, you know, these drugs get priced right

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Speaker 1: that will in a way that will help the companies

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Speaker 1: get the money they invested back plus a reasonable and

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Speaker 1: I say reasonable profit and still allow enough money for

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Speaker 1: future investment for the next drug. If if Kaletko wasn't

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Speaker 1: successful in our comedy, wasn't successful, and Samedko wasn't successful,

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Speaker 1: my kid wouldn't have a drug out of Vertex. And hey,

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Speaker 1: I don't maybe I sound selfish, but I got into

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Speaker 1: this to help my own kid, and I'm not going

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Speaker 1: to stop until there's something for him. And that's it

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Speaker 1: for this week's prognosis. This season, we've been exploring the

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Speaker 1: edge of innovation in medicine. It's not limited to one group.

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Speaker 1: A revolution is underway in pharmaceutical laboratories, sure, but also

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Speaker 1: on people's kitchen tables and in their garages. Whether you're

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Speaker 1: interested in rare diseases that affect one in a million

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Speaker 1: people or the genes found in everyone, change is coming.

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Speaker 1: Thank you so much for listening. To Prognosis. This is

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Speaker 1: the last episode in our series. If you like the show,

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Speaker 1: please head on over to Apple Podcasts or wherever you

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Speaker 1: listen to rate and review us. It is so helpful.

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Speaker 1: If you've listened to all eight episodes, awesome, thanks so much.

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Speaker 1: If you haven't, please go back and check them out.

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Speaker 1: Let us know what you think. We're still deep into

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Speaker 1: healthcare and you can see what we're up to on

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Speaker 1: Bloomberg's Prognosis page. That's bloomberg dot com slash prognosis. This

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Speaker 1: episode was produced by Lindsay Cratterwell. Our story editor was

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Speaker 1: Drew Armstrong. Thanks also to Liz Smith, francesco Leavia's head

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Speaker 1: of Bloomberg Podcasts. Thanks for being with us.