WEBVTT - How to Buy a Cure 0:00:00.840 --> 0:00:03.520 We spend one and a half times more per person 0:00:03.560 --> 0:00:07.000 on healthcare than any other country, but we aren't any 0:00:07.000 --> 0:00:10.280 healthier for it. This is one of the reasons that 0:00:10.320 --> 0:00:13.960 insurance preimus have gone up three times faster than wages. 0:00:14.920 --> 0:00:18.960 That's why so many employers, especially small businesses, are forcing 0:00:18.960 --> 0:00:23.239 their employees to pay more for insurance warror dropping the coverage. 0:00:26.200 --> 0:00:28.560 It used to seem so easy, a trip to the 0:00:28.600 --> 0:00:34.280 doctor's office, a prescription, sometimes a hospital stay. Healthcare plain 0:00:34.600 --> 0:00:38.479 and simple. But somewhere along the line, healthcare became an 0:00:38.520 --> 0:00:42.440 incredibly complex and lucrative business. It's a world in which 0:00:42.440 --> 0:00:46.479 patients can feel unheard and lost, but increasingly some are 0:00:46.520 --> 0:00:50.760 making their voices known and fighting back. Welcome to Prognosis, 0:00:51.080 --> 0:00:54.720 a podcast about health, medical technology, and the mind blowing 0:00:54.720 --> 0:00:58.160 innovation under way across the globe. I'm your host, Michelle 0:00:58.160 --> 0:01:08.000 fe Cortes. Today, there are two major power centers in 0:01:08.000 --> 0:01:11.440 the drug world, those who make medicines and those who 0:01:11.480 --> 0:01:15.160 pay for most of them. That's big pharma and insurers. 0:01:15.959 --> 0:01:18.920 These two camps often battle over how healthcare dollars in 0:01:18.959 --> 0:01:22.120 the US are spent. But where does that leave patients? 0:01:22.720 --> 0:01:27.320 People like you and me. We'll hear from patients who 0:01:27.360 --> 0:01:29.800 have taken matters into their own hands by helping pay 0:01:29.800 --> 0:01:35.080 for the development of treatments for their own disease. Patients 0:01:35.080 --> 0:01:37.760 are fighting for their lives, but while they're at it, 0:01:38.000 --> 0:01:43.039 they're often helping the financial interests of drug companies. Companies 0:01:43.080 --> 0:01:45.240 have figured this out and are working to cultivate a 0:01:45.280 --> 0:01:55.200 new kind of booster, the patients themselves. Here's Bloomberg's biotech 0:01:55.280 --> 0:02:07.760 reporter Rebecca Spalding with the story. Here's how the drug 0:02:07.760 --> 0:02:11.680 industry works in a nutshell. Farmer makes money when sures 0:02:11.720 --> 0:02:16.480 cover their drugs, Ensures save money when they don't. That 0:02:16.600 --> 0:02:18.560 was the first thing I learned when I started covering 0:02:18.560 --> 0:02:21.799 the healthcare industry. The second thing I learned is a 0:02:21.840 --> 0:02:26.360 little more difficult to understand. It's not always obvious who's 0:02:26.480 --> 0:02:30.480 on which side. I don't mean pharma and the insurers, 0:02:30.520 --> 0:02:37.320 that's easy. I mean all the people in between, hospitals, doctors, politicians, middlemen. 0:02:38.280 --> 0:02:40.600 The more you learn about the healthcare industry, the more 0:02:40.600 --> 0:02:43.480 you learn that there's a web of murky financial incentives 0:02:43.480 --> 0:02:45.760 that can tie actors to one side or the other. 0:02:46.600 --> 0:02:50.639 But one thing isn't murky. Patients often end up near 0:02:50.639 --> 0:02:55.000 the bottom of this power structure. That becomes clear when 0:02:55.000 --> 0:02:59.360 someone gets seriously sick or needs an operation. What seems simple, 0:02:59.800 --> 0:03:04.320 I doctor's visit, a prescription, a hospital stay can feel 0:03:04.320 --> 0:03:07.840 like falling into a bottomless pit. Some patients find out 0:03:07.880 --> 0:03:11.200 their drugs will cost them thousands of dollars. For others, 0:03:11.200 --> 0:03:15.680 there's no drug for their condition at all. That's where 0:03:15.720 --> 0:03:18.600 people like Bob Coughlin come in. Bob is a lot 0:03:18.600 --> 0:03:21.320 of things. His history a politician. Now he works for 0:03:21.320 --> 0:03:23.680 the drug industry in the Massachusetts one of the biggest 0:03:23.720 --> 0:03:26.800 industry clusters in the world. It's very clear who he 0:03:26.960 --> 0:03:29.680 is and what he's about. He has an agenda and 0:03:29.680 --> 0:03:32.079 he can't wait to tell you what it is. He's 0:03:32.080 --> 0:03:35.720 the CEO of the state's biotechnology trade group. But he's 0:03:35.760 --> 0:03:39.120 also a dad and a patient advocate. I'm a completely 0:03:39.160 --> 0:03:43.120 recovering politician. I served in elective office, and when I 0:03:43.160 --> 0:03:48.600 was in the legislature in Massachusetts, I got a first 0:03:49.360 --> 0:03:52.040 you know, firsthand. I was a front row seat as 0:03:52.080 --> 0:03:56.160 to weird policy intersected with science. And the reason that 0:03:56.280 --> 0:03:59.120 was so important to me is because it's personal. Um, 0:03:59.160 --> 0:04:01.000 you know, when I was running for the legislature, my 0:04:01.040 --> 0:04:03.640 wife and I were having our third child, and we 0:04:03.720 --> 0:04:06.840 found out in utero when my wife was twenty one 0:04:06.880 --> 0:04:10.080 weeks pregnant, that that little baby in her belly was 0:04:10.080 --> 0:04:14.400 going to have cystic fibrosis. And it really shocked our world. 0:04:14.600 --> 0:04:17.360 It shocked us. It was horrible. It was the worst thing, 0:04:17.680 --> 0:04:20.160 you know, we've ever been through in our lives. And 0:04:20.720 --> 0:04:23.960 you know, I found myself as someone who wasn't a doctor. 0:04:24.000 --> 0:04:26.760 I wasn't a scientist, you know what was I was 0:04:26.800 --> 0:04:29.520 a member of the legislature in Massachusetts and the most 0:04:29.560 --> 0:04:33.120 important thing to me was trying to find a cure 0:04:33.200 --> 0:04:35.400 for my kid. And I didn't want to go. I 0:04:35.440 --> 0:04:37.200 used to have nightmares about going to his funeral and 0:04:37.240 --> 0:04:40.200 I wanted that to stop. And um as a type 0:04:40.200 --> 0:04:43.920 of personality, I decided to get involved. And how could 0:04:43.920 --> 0:04:49.240 I get involved? I could really work with the biotech industry, 0:04:49.640 --> 0:04:51.880 the leaders of industry, to say what can government do 0:04:51.960 --> 0:04:53.640 to do better? And this is this is where this 0:04:53.720 --> 0:04:58.159 all came about. Cystic Fibrosis is a deadly childhood lung disease. 0:04:58.720 --> 0:05:01.599 Back in two thousand two, Bob's son was diagnosed. It 0:05:01.680 --> 0:05:05.000 was a death sentence, a genetic defect leads to a 0:05:05.080 --> 0:05:08.119 build up a thick mucus in the lungs. It's harder 0:05:08.120 --> 0:05:11.960 and harder to breathe. Infections are common as patients age. 0:05:12.360 --> 0:05:16.560 Some patients die in their teens, others live longer. At 0:05:16.560 --> 0:05:18.960 the time Bob's son was diagnosed, the median age of 0:05:19.000 --> 0:05:22.159 survival was about thirty two. You know, I remember when 0:05:23.279 --> 0:05:25.200 when I found out when we when Christine and I 0:05:25.279 --> 0:05:27.120 found out that we were going to have a kid 0:05:27.240 --> 0:05:32.360 with CF, a baby with CF. My first thought was, Okay, 0:05:32.400 --> 0:05:35.680 we got to find the doctors that are going to 0:05:35.800 --> 0:05:38.480 fix this, that are gonna come up with a cure. 0:05:39.680 --> 0:05:42.520 And I talked to some other folks from the CF 0:05:42.560 --> 0:05:47.039 community and they said, no, no, no. Most drugs don't 0:05:47.080 --> 0:05:50.760 come out of government labs or university towers. To actually 0:05:50.760 --> 0:05:53.480 make a drug, kind of drug that Bob's son needs, 0:05:53.880 --> 0:05:58.239 you need a pharmaceutical company, and developing most drugs takes time, 0:05:58.680 --> 0:06:02.520 usually a decade, and on average costs about two and 0:06:02.560 --> 0:06:07.200 a half billion dollars. What's more, drug companies get to 0:06:07.279 --> 0:06:10.560 choose which diseases they research and which diseases they don't. 0:06:11.480 --> 0:06:13.840 And the sad reality is that some diseases are more 0:06:13.880 --> 0:06:19.640 profitable than others. Like so much else in our consumer culture, 0:06:19.880 --> 0:06:24.120 diseases have brands, they have cachet cancer is hot. Everyone 0:06:24.160 --> 0:06:27.240 wants to cure for Alzheimer's. There's a liver disease that's 0:06:27.279 --> 0:06:30.840 particularly buzzy right now since it's tied to obesity, meaning 0:06:30.880 --> 0:06:35.240 there's plenty of patients. There's tons of pharmaceutical company backers 0:06:35.279 --> 0:06:38.320 and optimistic Wall Street analysts cheering them along the way. 0:06:39.800 --> 0:06:42.919 At the time Bob's son was diagnosed, cystic fibrosis was 0:06:42.960 --> 0:06:46.320 not on the radar of the pharmaceutical industry, but it 0:06:46.360 --> 0:06:49.279 did have one powerful force that would set it apart 0:06:49.320 --> 0:06:52.600 from other diseases and would eventually make the industry pay 0:06:52.640 --> 0:06:58.200 attention patients and the parents of patients. People like Bob. 0:07:00.520 --> 0:07:02.920 A gentleman who's still a mentor to me and one 0:07:02.960 --> 0:07:05.200 of my heroes, told me, we're got to go out 0:07:05.240 --> 0:07:07.880 and raise money and buy a cure for your kid. 0:07:07.960 --> 0:07:11.000 His son had passed away from cystic fibrosis, and he's 0:07:11.040 --> 0:07:13.600 dedicated to his son's legacy that he was going to 0:07:13.640 --> 0:07:16.080 continue to raise money until there was a cure so 0:07:16.160 --> 0:07:18.960 my son won't die. And when he said it was 0:07:19.040 --> 0:07:21.640 quite sobering. He said, you have to. We have to 0:07:21.760 --> 0:07:24.800 buy a cure. And I remember that like it was 0:07:25.080 --> 0:07:28.400 this morning, because who in their right mind would think 0:07:28.400 --> 0:07:31.520 that we have to buy cures? Back then, I thought 0:07:31.600 --> 0:07:33.920 doctors just did it. Scientists just did it. It was 0:07:33.960 --> 0:07:37.480 the right thing to do. I didn't understand the whole 0:07:37.520 --> 0:07:41.040 business around it and how difficult it is to actually 0:07:41.080 --> 0:07:46.240 develop a therapy, never mind a cure. Bob is a lobbyist, 0:07:46.360 --> 0:07:49.280 but he's also it's known as a patient advocate. It's 0:07:49.280 --> 0:07:52.960 an idea that's been around for decades, patients fighting for themselves. 0:07:53.640 --> 0:07:56.920 But a more recent year, something else has happened. Remember 0:07:56.960 --> 0:08:00.520 that web of healthcare and sentence I mentioned, patients are 0:08:00.560 --> 0:08:05.040 in there too. The Cystic Fibrosis Foundation was founded in 0:08:05.160 --> 0:08:09.800 nine by parents who watched their children die. They vowed 0:08:09.840 --> 0:08:13.720 to find a cure. Around that time, the average age 0:08:13.720 --> 0:08:17.720 of survival was about ten years old. They raised money 0:08:17.720 --> 0:08:21.760 and began funding basic academic research, but they still didn't 0:08:21.800 --> 0:08:31.520 have drugs at the time. Pharma wasn't interested to see 0:08:31.560 --> 0:08:34.200 a foundation decided they would have to get them interested. 0:08:35.400 --> 0:08:38.120 In two thousand, two years before Bob Soun was born, 0:08:38.240 --> 0:08:42.920 the foundation made a controversial bet. Rather than fund academic research, 0:08:43.080 --> 0:08:46.079 It decided to invest forty million dollars in a small 0:08:46.120 --> 0:08:50.880 biotechnology company to find a cure for cystic fibrosis. That 0:08:50.960 --> 0:08:54.720 investment eventually turned into the first ever drugs approved that 0:08:54.800 --> 0:08:59.040 treat the underlying cause of the disease. Today, Vertex, the 0:08:59.040 --> 0:09:01.520 maker of those drugs, is a darling of Wall Street. 0:09:02.679 --> 0:09:06.280 Vertex Pharmaceuticals will be presenting new data on its cystic 0:09:06.320 --> 0:09:09.760 fibrosis drugs next week. VerTech stock also rising today, and 0:09:09.760 --> 0:09:11.880 the company has high hopes for the drug and development. 0:09:12.720 --> 0:09:15.600 But it's not just that Vertex sells a successful drug, 0:09:16.400 --> 0:09:19.640 it also charges a lot for them, about three hundred 0:09:19.679 --> 0:09:23.120 thousand dollars a year. Drug prices have become a huge 0:09:23.120 --> 0:09:26.880 issue in the United States for many patients and politicians. 0:09:26.920 --> 0:09:29.880 That means railing against the drug companies that invented the products. 0:09:31.080 --> 0:09:35.520 But not Bob. He's unapologetic about companies charging that much 0:09:35.520 --> 0:09:38.560 for their treatments, especially when it's the insurance companies that 0:09:38.600 --> 0:09:42.120 are picking up the tab. People talk about, oh, well, 0:09:42.160 --> 0:09:44.839 how can these companies make money off things that were 0:09:44.920 --> 0:09:49.600 invented in with within i H funding and hospitals and universities. Well, 0:09:50.160 --> 0:09:52.520 they'll sit on a shelf for decades and never turn 0:09:52.559 --> 0:09:55.480 into anything that could ever help a patient. If vcs 0:09:55.480 --> 0:09:58.880 don't get involved, investors get involved, business people get involved 0:09:58.880 --> 0:10:01.439 and actually take that. You know, to use a football 0:10:01.480 --> 0:10:07.160 and analogy. The NIH funding and the science can get 0:10:07.200 --> 0:10:09.080 you on the field, but you're still gonna go ninety 0:10:09.160 --> 0:10:11.800 nine yards to get a touchdown to invent a drug. Well, 0:10:11.880 --> 0:10:15.240 that's what businesses do, and it cost money, and it's 0:10:15.360 --> 0:10:17.599 high risk, and there needs to be a reward to 0:10:17.720 --> 0:10:20.040 incentivize people to do that. And that's why a lot 0:10:20.120 --> 0:10:23.400 of people, especially in rear genetic disorders, parents will call 0:10:23.480 --> 0:10:26.200 me and they're like, what can we do? Raise money 0:10:26.240 --> 0:10:28.280 in investing companies and buy a que for your kid? 0:10:28.440 --> 0:10:30.720 And again, it looks like there are deer in headlights 0:10:30.760 --> 0:10:34.559 when I say that, because nobody thinks that that's what 0:10:34.679 --> 0:10:38.320 you're supposed to do until it happens to them. At 0:10:38.400 --> 0:10:41.040 this point in our conversation, I'm wondering how that would 0:10:41.080 --> 0:10:45.080 even work buy a cure for your kid? How would 0:10:45.120 --> 0:10:48.599 someone actually go about buying a cure? And so is 0:10:48.640 --> 0:10:51.720 that really what when you're a patient or organized patient group? 0:10:52.400 --> 0:10:54.560 Is that why patients organized? Or can you walk us 0:10:54.640 --> 0:10:56.920 through kind of more of that landscape, not just within 0:10:57.000 --> 0:11:01.320 the CF world, but other disease others you mentioned, Yeah, 0:11:01.360 --> 0:11:03.920 good Disease foundations focus on a few things. First and 0:11:04.040 --> 0:11:07.679 foremost awareness, Right, You're not going to raise money to 0:11:07.800 --> 0:11:11.240 invest if people aren't aware. Look what folks from the 0:11:11.480 --> 0:11:14.640 you know, breast cancer have done around awareness. It's beautiful. 0:11:15.000 --> 0:11:17.680 I mean, you raise awareness, then you can raise funds, 0:11:17.720 --> 0:11:21.160 and then also patient support and policy and advocacy. Disease 0:11:21.200 --> 0:11:25.040 foundations need to support their community, give them access to information, 0:11:25.360 --> 0:11:27.920 give them access to support groups, give them access to 0:11:28.360 --> 0:11:32.839 you know, use them in a positive way. With politicians. Politicians, Hey, 0:11:32.880 --> 0:11:35.120 I was one, right, I listened to the people that 0:11:35.200 --> 0:11:37.280 live in my district, my constituents. I didn't want to 0:11:37.280 --> 0:11:40.400 meet with the CEOs from companies to hear what they wanted. 0:11:40.600 --> 0:11:42.839 I wanted to meet with the people that that lived 0:11:42.880 --> 0:11:44.760 in my district that could vote me in office or 0:11:44.840 --> 0:11:47.120 vote me out of office. And I'm curious how that 0:11:47.160 --> 0:11:49.959 works because you mentioned, you know yourself, that if a 0:11:50.040 --> 0:11:52.559 patient came into your office when you're a legislator, I 0:11:52.600 --> 0:11:53.959 mean that's you want to talk to. You don't want 0:11:53.960 --> 0:11:55.840 to talk to the CEO of my own tech company. 0:11:56.000 --> 0:11:58.480 But by virtue. It sort of seems like patients might 0:11:58.520 --> 0:12:01.199 be doing the marketing of some of these companies UM, 0:12:01.480 --> 0:12:04.959 and you know, they're the ones spreading awareness about the disease, 0:12:05.040 --> 0:12:08.920 doing basically free marketing, raising money even in the cases 0:12:08.960 --> 0:12:11.880 of CF and other diseases for these companies. The companies 0:12:11.920 --> 0:12:15.000 turn around and to your point, you know, these these 0:12:15.200 --> 0:12:18.480 treatments can cost hundreds of thousands of dollars, So do 0:12:18.600 --> 0:12:23.480 patients help companies charge those those rates? Or I could 0:12:23.480 --> 0:12:25.000 see how a cynic would look at it that way. 0:12:25.000 --> 0:12:27.360 And again is speaking as a CF dad. I've sat 0:12:27.480 --> 0:12:31.599 with many CF patients and and CF families, most i 0:12:31.640 --> 0:12:34.199 should say, more CF moms and dads than patients. To 0:12:34.280 --> 0:12:39.520 explain that when a drug like UM, like Kaleitako, which 0:12:39.559 --> 0:12:42.959 was the first drug, was priced at you know, keep 0:12:42.960 --> 0:12:44.920 in mind this is before discount of rebates. That's a 0:12:44.920 --> 0:12:46.760 whole different animal that we can get into as it 0:12:46.840 --> 0:12:49.360 relates to the future of healthcare. But let's say the 0:12:49.440 --> 0:12:52.840 list price was you know, three d thousand dollars. That's 0:12:52.880 --> 0:12:55.400 not in a sense to pay for Kalitako, that's to 0:12:55.480 --> 0:12:58.920 pay for the next drug. In other words, Vertex has 0:12:58.960 --> 0:13:03.360 invested over nine billion dollars to get to a point 0:13:03.440 --> 0:13:08.640 where they've got a drug for fift oft People think 0:13:08.679 --> 0:13:11.079 of the revenue model here. This is going to be expensive, 0:13:11.080 --> 0:13:13.439 and again it will save money to the health care 0:13:13.520 --> 0:13:17.360 system over time and costs avoided later. But we don't 0:13:17.400 --> 0:13:25.160 have a payer system that tracks costs avoided. For all 0:13:25.200 --> 0:13:28.000 the money Bob is raised for disease research and the 0:13:28.120 --> 0:13:31.559 industry at large, his son still doesn't have a cure. 0:13:32.600 --> 0:13:35.640 Vertex has drugs only work in about half of all patients. 0:13:36.120 --> 0:13:39.839 The company is researching promising drug combinations it hopes will 0:13:39.880 --> 0:13:43.400 help reach more. Bob hopes they'll work for his son. 0:13:44.280 --> 0:13:46.559 That might be why he's not as concerned about what 0:13:46.720 --> 0:13:50.760 the current treatments cost. Vertex can charge as much as 0:13:50.800 --> 0:13:55.120 it wants as long as it keeps going. They don't 0:13:55.160 --> 0:13:57.600 have one that works for my son's mutation yet. Hope 0:13:57.640 --> 0:13:59.520 to God, I think the next one will work. All 0:13:59.600 --> 0:14:02.080 night work, the triple will work for him. I'm so confident. 0:14:02.160 --> 0:14:05.079 I've never been this optimistic. They're confident. In the sixteen 0:14:05.160 --> 0:14:07.960 years that he's been alive, but the clock is ticking. 0:14:08.000 --> 0:14:10.439 He's not getting any healthier, so he gets sicker and 0:14:10.480 --> 0:14:12.559 sicker every day, so we need this to happen. But 0:14:12.920 --> 0:14:19.119 let's go back to the therapies that existed, the chronic therapies, 0:14:19.520 --> 0:14:25.640 the antibiotics, the anti mucalytics, the CHESSPT, the constant clean 0:14:25.720 --> 0:14:28.680 outs in the hospital, the dozens, if not hundreds of 0:14:28.760 --> 0:14:31.720 pancreatic enzymes that these kids need to take every day 0:14:32.040 --> 0:14:36.840 just to eat food. These are expensive patients as and 0:14:36.920 --> 0:14:39.640 they still get sicker and sicker every day and ultimately die. 0:14:40.000 --> 0:14:42.480 You know, they ultimately need a transplant of sort, whether 0:14:42.520 --> 0:14:45.040 it's a liver transplant like in my son's case. In 0:14:45.160 --> 0:14:47.360 most cases it gets to the point where they need 0:14:47.840 --> 0:14:51.480 a lung transplant, and then they die. And it's it's horrible. 0:14:51.720 --> 0:14:56.520 It's a horrible, horrible thing, and it's a very very 0:14:56.960 --> 0:15:00.040 expensive thing. It's it's difficult to talk about dollars and 0:15:00.120 --> 0:15:03.280 sense when you're thinking about a loved one's life. Remember 0:15:03.400 --> 0:15:05.880 some of those hidden incentives I mentioned at the beginning 0:15:05.920 --> 0:15:10.120 of the episode, this is one of them. No matter 0:15:10.200 --> 0:15:13.960 how much patients may criticize high drug prices, the reality 0:15:14.120 --> 0:15:19.600 is that insurance companies don't develop drugs. Pharma does. If 0:15:19.640 --> 0:15:22.720 you're dying, it's a drug made by a drug company 0:15:22.920 --> 0:15:27.640 that might save your life. Pharma knows this, and they 0:15:27.720 --> 0:15:30.320 know that patients are a lot more sympathetic a voice 0:15:30.400 --> 0:15:34.120 than a CEO. That's why they give patient groups so 0:15:34.240 --> 0:15:37.840 much funding. Kaiser Health News found that the pharmaceutical industry 0:15:37.880 --> 0:15:40.480 gave patient groups a hundred and sixteen million dollars in 0:15:40.560 --> 0:15:44.320 two thousand fifteen. The links are so interconnected that pharma 0:15:44.400 --> 0:15:48.800 companies now have whole divisions dedicated to patient advocacy. Just 0:15:49.160 --> 0:15:53.040 like press offices handle a company's relationships with reporters, patient 0:15:53.080 --> 0:15:58.080 advocacy divisions work with patients, the awareness that patients raise, 0:15:58.200 --> 0:16:00.280 the meanings they arrange with politicians. It is like the 0:16:00.320 --> 0:16:05.480 one Bob mentioned that helps patients, but it also helps pharma. 0:16:07.480 --> 0:16:09.920 Ever go on a walk or run that benefits disease 0:16:10.000 --> 0:16:13.600 research next time, look at who the sponsors are. You 0:16:13.680 --> 0:16:17.120 may be surprised to see if pharmaceutical company listed the 0:16:17.560 --> 0:16:22.120 generous sponsors who make this possible. Here today, this this 0:16:22.240 --> 0:16:24.520 event has grown so much over the last five years 0:16:24.560 --> 0:16:25.920 that we have to have it in a hotel now. 0:16:26.000 --> 0:16:27.760 We couldn't fit in another space, and we couldn't do 0:16:27.800 --> 0:16:30.440 it without our sponsors. For you folks that are trying 0:16:30.480 --> 0:16:35.280 to log onto the Internet. The password is actually Surrepta 0:16:35.840 --> 0:16:41.400 is hiring capital s. There is no periods in there. 0:16:41.440 --> 0:16:44.440 And how ironic is it that the password name is 0:16:44.480 --> 0:16:47.000 actually that Surreptor is hiring. Like, take it. That's a 0:16:47.000 --> 0:16:50.680 sponsoring opportunity right there. It's pretty clever. Ladies and gentlemen, please, 0:16:51.640 --> 0:16:53.720 that's Bob. A few weeks after I spoke to him, 0:16:53.800 --> 0:16:56.600 presiding over an industry conference about how to best work 0:16:56.640 --> 0:16:59.840 with patients. The summit was held at a hotel and 0:17:00.040 --> 0:17:03.360 Cambridge and sponsored by some of the largest biotechnology companies 0:17:03.400 --> 0:17:08.280 in town. Drug executives mingled with disease advocates over pastries 0:17:08.480 --> 0:17:12.480 and artisanal coffee. If I hadn't already known about the ties, 0:17:12.680 --> 0:17:20.119 the scene might have struck me as bizarre. One of 0:17:20.200 --> 0:17:22.440 the patient advocates who spoke at the meeting you just 0:17:22.560 --> 0:17:26.480 heard was a woman named Laura Greco. Laura used to 0:17:26.520 --> 0:17:29.480 be a lawyer. She's in her forties and has two 0:17:29.560 --> 0:17:32.320 children at home. A few years ago, she learned she 0:17:32.359 --> 0:17:36.200 had lung cancer. Laura never smoked, but she resents the 0:17:36.280 --> 0:17:38.800 fact that that's usually the first question she's asked when 0:17:38.840 --> 0:17:42.600 she tells people her diagnosis. Even if she did smoke. 0:17:42.760 --> 0:17:47.080 Does that mean she deserves to die? Nobody wants cancer, 0:17:48.000 --> 0:17:50.360 But if all the cancers out there long as high 0:17:50.400 --> 0:17:53.399 on the list of bad ones, many cases, it's a 0:17:53.480 --> 0:17:56.880 death sentence. Laura wants to change that by doing many 0:17:56.920 --> 0:17:59.560 of the things that the cystic fibrosis community once did, 0:18:00.359 --> 0:18:03.159 raise awareness about the disease and fund basic research to 0:18:03.240 --> 0:18:06.680 help make pharma pay more attention. In a way, I 0:18:06.800 --> 0:18:11.480 thank god for the pharmaceutical companies because UM, lung cancer 0:18:11.680 --> 0:18:15.960 has historically been ignored by our federal government. Lung cancer 0:18:16.080 --> 0:18:20.240 is responsible for of all cancer deess and yet receives 0:18:20.240 --> 0:18:25.760 only six percent of federal funding. So re word for pharma. UM. 0:18:25.920 --> 0:18:28.919 Seeing the huge potential of what is a lung cancer, 0:18:29.880 --> 0:18:31.720 I don't think I'd be alive today, you know. I'm 0:18:31.800 --> 0:18:33.800 very thankful to them on the one hand. On the 0:18:33.840 --> 0:18:40.040 other hand, they're obviously problems, right. I mean, the drug 0:18:40.119 --> 0:18:43.080 I'm on is about fifteen a long, which is a 0:18:43.160 --> 0:18:45.840 lot of money, And of course my insurance does cover it, 0:18:46.080 --> 0:18:48.680 and there's a co paid cards, so I pay five 0:18:48.720 --> 0:18:51.959 dollars a month, No big deal, right, But UM, if 0:18:52.000 --> 0:18:54.720 I were in Medicare or Medicaid, I would pay a 0:18:54.760 --> 0:18:57.920 lot more than that. That doesn't strike me as very fair, 0:18:58.080 --> 0:19:02.240 and it doesn't strike me as a viable economic model 0:19:02.440 --> 0:19:07.480 to charge someone you know, over a hundred thousand dollars 0:19:07.600 --> 0:19:10.639 a year for a drug to keep them alive. But 0:19:10.800 --> 0:19:13.800 she has some words for drug executives, and she wasn't 0:19:13.840 --> 0:19:16.000 afraid to share them when she was on the panel 0:19:16.119 --> 0:19:20.040 at the Patient's Summit in Cambridge, like about how expensive 0:19:20.119 --> 0:19:22.320 it is for patients like her to participate in the 0:19:22.400 --> 0:19:27.040 clinical studies pharma so desperately needs. You know, Boston is 0:19:27.080 --> 0:19:29.800 not cheap. I think you got to know that every 0:19:29.880 --> 0:19:33.760 time we come here in seven hundreds, not thousands of dollars, 0:19:34.280 --> 0:19:37.879 and none of that is compensated by the trials and 0:19:38.320 --> 0:19:40.960 in matas I've been told there's a law about this. 0:19:41.400 --> 0:19:47.560 Let's change that um clinical trial participate travel costs and 0:19:47.720 --> 0:19:51.560 at earlier in SPAT should begin to page on clinical trials. 0:19:52.640 --> 0:19:56.920 It's you know, heart time valuable and certainly we should 0:19:57.000 --> 0:20:02.640 reimburse just for our costs and getting there. As she speaks, 0:20:02.880 --> 0:20:06.080 advising on everything from how to share clinical trial results 0:20:06.160 --> 0:20:10.320 to not patronizing patients by handing out magnets, I noticed 0:20:10.359 --> 0:20:13.200 executives around the room taking out their notebooks and writing 0:20:13.240 --> 0:20:17.080 down her advice. After the panel, I spoke to Laura 0:20:17.119 --> 0:20:20.399 outside the hotel asked her what her thoughts were on 0:20:20.440 --> 0:20:24.320 the pharmaceutical industry. In part, she's grateful to them because 0:20:24.400 --> 0:20:27.480 they developed the drugs she's on, but another part of 0:20:27.520 --> 0:20:30.320 her thinks they don't really get it. Offering her a 0:20:30.400 --> 0:20:32.919 magnet when she's a stage for a lung cancer patient 0:20:33.240 --> 0:20:36.200 is not the kind of engagement she's looking for. She 0:20:36.320 --> 0:20:40.320 wants better drugs, more funding, more research. My end goal 0:20:40.440 --> 0:20:44.120 is to live. My end goal is to survive. That's 0:20:44.200 --> 0:20:49.439 really the ultimate goal. UM. But you know, barring living, UM, 0:20:50.480 --> 0:20:56.040 I still think I'll be successful if I am able 0:20:56.080 --> 0:20:58.520 to look at my kids and say, look, I tried 0:20:58.640 --> 0:21:02.560 everything I could to be alive, and I hopefully move 0:21:02.720 --> 0:21:08.800 that needle so that parents who get a lung cancer 0:21:08.920 --> 0:21:15.400 diagnosis UM sometime in the future aren't quite as devastated 0:21:16.119 --> 0:21:18.320 as I was when I was diagnosed. I mean, it's 0:21:18.359 --> 0:21:20.600 still probably going to be the worst day of their life, 0:21:21.240 --> 0:21:27.680 but maybe one day, UM, and one day soon, someone 0:21:27.760 --> 0:21:30.159 can be diagnosed with lung cancer and not be the 0:21:30.240 --> 0:21:36.840 death sentence it usually is. That's Bob's goal too. I 0:21:37.000 --> 0:21:43.680 think patients do help companies succeed when they should because 0:21:43.760 --> 0:21:46.200 it's in their own it's in my son's best interest 0:21:46.280 --> 0:21:49.080 for me to help any company that is doing CF 0:21:49.200 --> 0:21:54.120 research and hopefully, you know, these drugs get priced right 0:21:54.440 --> 0:21:56.800 that will in a way that will help the companies 0:21:57.200 --> 0:22:00.040 get the money they invested back plus a reasonable and 0:22:00.119 --> 0:22:03.440 I say reasonable profit and still allow enough money for 0:22:03.560 --> 0:22:08.960 future investment for the next drug. If if Kaletko wasn't 0:22:09.000 --> 0:22:13.200 successful in our comedy, wasn't successful, and Samedko wasn't successful, 0:22:13.920 --> 0:22:17.360 my kid wouldn't have a drug out of Vertex. And hey, 0:22:17.440 --> 0:22:20.000 I don't maybe I sound selfish, but I got into 0:22:20.080 --> 0:22:21.240 this to help my own kid, and I'm not going 0:22:21.280 --> 0:22:40.960 to stop until there's something for him. And that's it 0:22:41.160 --> 0:22:45.159 for this week's prognosis. This season, we've been exploring the 0:22:45.359 --> 0:22:49.080 edge of innovation in medicine. It's not limited to one group. 0:22:49.520 --> 0:22:54.160 A revolution is underway in pharmaceutical laboratories, sure, but also 0:22:54.280 --> 0:22:57.800 on people's kitchen tables and in their garages. Whether you're 0:22:57.840 --> 0:23:00.440 interested in rare diseases that affect one in a million 0:23:00.520 --> 0:23:04.440 people or the genes found in everyone, change is coming. 0:23:06.280 --> 0:23:09.680 Thank you so much for listening. To Prognosis. This is 0:23:09.720 --> 0:23:13.240 the last episode in our series. If you like the show, 0:23:13.560 --> 0:23:16.200 please head on over to Apple Podcasts or wherever you 0:23:16.320 --> 0:23:19.680 listen to rate and review us. It is so helpful. 0:23:20.440 --> 0:23:23.600 If you've listened to all eight episodes, awesome, thanks so much. 0:23:24.240 --> 0:23:26.440 If you haven't, please go back and check them out. 0:23:26.800 --> 0:23:29.840 Let us know what you think. We're still deep into 0:23:29.920 --> 0:23:32.000 healthcare and you can see what we're up to on 0:23:32.080 --> 0:23:38.680 Bloomberg's Prognosis page. That's bloomberg dot com slash prognosis. This 0:23:38.800 --> 0:23:42.320 episode was produced by Lindsay Cratterwell. Our story editor was 0:23:42.400 --> 0:23:46.639 Drew Armstrong. Thanks also to Liz Smith, francesco Leavia's head 0:23:46.640 --> 0:23:49.840 of Bloomberg Podcasts. Thanks for being with us.