“Patient stories, as you know, can either make or break a story,” said Laurie McGinley, a former health and science editor at The Washington Post who is now on the board of Patient Action for Cancer Research, or PACR, a new advocacy organization aimed at organizing and amplifying patient voices in an effort to protect life-saving federal health research.
This episode is available on Spotify and Apple Podcasts.
In last week’s issue, The Cancer Letter reporter Sara Willa Ernst wrote about how PACR is building a repository of patient stories to better connect policymakers to the people most affected by their decisions.
On this week’s episode of The Cancer Letter Podcast, Sara spoke with Jacquelyn Cobb, associate editor of The Cancer Letter, and McGinley.
In the episode, affectionately dubbed “the Ladies’ Podcast,” Sara, Jacquelyn, and McGinley talk about Sara’s process of reporting and writing the story, the role of a group like PACR in the current political climate, and how McGinley—who was part of a team at The Wall Street Journal that was awarded the Pulitzer Prize for reporting on AIDS—decided to join the board of PACR.
“From a professional standpoint, and I guess this takes us into the wider discussion, it’s just so obvious that it’s important to have patients and patients stories at the center of this debate, this very difficult debate that’s going on now about funding research of all different kinds, especially cancer research,” McGinley said. “And this is not news to anyone in journalism or anyone in the cancer community. We’re not trying to preach to the choir, and people already know this, but we’re just trying to make it somewhat easier and to augment efforts to do this.”
Other stories mentioned in this podcast include:
- Former NCI official’s nonprofit seeks to tell the stories of cancer patients
- Anthony Letai sworn in as 18th NCI director
- U.S. government shuts down Impact on NCI uncertain as administration threatens more RIFs
- Sexual and gender minoritized cancer patients deserve better
- Seeding NCORPs with academically-focused oncologists can advance the national research agenda
This episode was transcribed using transcription services. It has been reviewed by our editorial staff, but the transcript may be imperfect.
The following is a transcript of this week’s In the Headlines, a weekly series on The Cancer Letter Podcast:
Jacquelyn Cobb: This week on The Cancer Letter Podcast…
Sara Willa Ernst: We’ve talked about trying to help journalists find patients. I mean, I know from firsthand experience that sometimes that’s the hardest part of the story—all of the technical information, you can call somebody up and they can explain it to you—but trying to find a real person who is willing to share their own personal story. And, obviously, when it comes to being a cancer patient or a cancer survivor, this is one of the most vulnerable periods of their life and they’re just volunteering to share it with everybody.
Laurie McGinley: Of course, patient stories, as you know, can either make or break a story. I mean, it’s one thing if you’re writing about a study, [The] New England Journal of Medicine study, where you’re just doing a fast, hard news hit on something.
But if you’re doing something that you’re trying to get substantial space in the publication or whatever, for a general interest publication, you have to have a patient story, and I’ve had really good stories just die because I don’t have a good anecdote or narrative or whatever because the patients have all kinds of reactions to it.
Some of them really do get great gratification and relief in telling their stories, but others are very private, and you can 100% understand that.
Paul Goldberg: You are listening to The Cancer Letter Podcast. The Cancer Letter is a weekly independent magazine covering oncology since 1973. I’m your host, Paul Goldberg, editor and publisher of The Cancer Letter.
Jacquelyn Cobb: And I’m your host, Jacquelyn Cobb, associate editor of The Cancer Letter. We’ll be bringing you the latest stories, groundbreaking research, and critical conversations shaping oncology.
Paul Goldberg: So, let’s get going.
Jacquelyn Cobb: Good morning, Sara. How’s it going?
Sara Willa Ernst: Morning. Good, how are you doing?
Jacquelyn Cobb: Good. It’s fun to have you on the podcast. Just a ladies podcast today. Very fun!
And, yeah, I’ve talked to you about this a little bit this week, but my body is wrecked. I did my marathon! I completed it! We did four and a half hours, which might not sound that impressive, but it was my first marathon. I’m very excited.
And I’m just about able to walk downstairs now. Just about.
Sara Willa Ernst: Hell, yes.
Jacquelyn Cobb: So, we’re getting there.
Sara Willa Ernst: Which marathon was this?
Jacquelyn Cobb: It was the Maine Marathon in Portland, Maine, which is actually—just a very small sidebar—the same weekend, I believe, as the Portland Marathon of Portland, Oregon, and Kevin was signed up for the wrong one.
Sara Willa Ernst: Was he allowed to run?
Jacquelyn Cobb: Yeah, he had to register, and apparently it happens enough that the Portland Marathon in Oregon does refunds—very, very kindly of them. But yeah, that was a little bit of a SNAFU. But anyway, I will take us through last week’s headlines—and it’s a really fun podcast today. Sara is going to be talking about her cover story, so it’ll be a really fun, interesting conversation.
So, the cover story was about the very new advocacy organization called Patient Action for Cancer Research. It aims to show the impact of federal dollars, federal research on actual patient lives, and that’s the [story] we’ll be diving into today. So, I won’t talk about that too much at this point.
The rest of the issue was really strong. Like always, Claire was an amazing quarterback. We had a follow-up story about the new NCI director, Anthony Letai. He was actually sworn in last week, so we were able to write about that and have a little bit more details about the cancer groups or health groups talking about his appointment.
We also had a story about the government shutdown, which, a little bit of mystery, but we were able to do some reporting and got some information about how it’s going to impact or how it is currently impacting oncology. And then, we had two incredible guest editorials. One was talking about sexual and gender minoritized patients and how they are being impacted by everything—all of the policy changes coming out of Washington and just the rhetoric right now. And there was a really strong patient example in that story as well.
So, it fit into the issue really beautifully and it came together to prove the point once again that patients are really, should be at the center here.
And then, we had another guest editorial about the opportunities in community oncology in NCORP centers. So, that’s a really fun story. Definitely check that out.
And then, we had some cancer policies and in briefs, but that’s where I will stop.
And today, we have a guest from the board of PACR, the [advocacy] group from the lead story, Laurie McGinley. She is an award-winning journalist who covered cancer research, healthcare policy, and FDA for The Washington Post. And she is a former health and science editor at The Post and worked also for The Wall Street Journal, where she was part of a team that was awarded the Pulitzer Prize for reporting on AIDS.
Very exciting! Just, I think, as journalists, we’re excited to talk to her in general and also really excited to talk about PACR. So, welcome, Laurie, it’s so good to have you on the podcast.
Laurie McGinley: Thank you so much. I’m really excited to be on the ladies’ podcast. This is great. And, to both of you. So, thank you very much. Thanks so much for having me. Appreciate it.
Jacquelyn Cobb: Well, Sarah, I’ll probably let you talk to Laurie mostly, but I just have one question to start.
Sara Willa Ernst: Sure.
Jacquelyn Cobb: … if it’s all right. [Laurie,] I’d love to hear how you got involved with PACR.
Laurie McGinley: So, I guess the answer is both because of my professional experience but also personal experience. Peter Garrett, who as you know was the head of external relations at the National Cancer Institute. I’ve known him for 30 years through various jobs that he had in healthcare, communications, and policy, and we’ve worked together on various stories.
So, when he told me that he was leaving NCI and that he had this idea, I was like, “Wow, that sounds great. Anything I can do to help.” So, that’s how I got involved.
And, from a professional standpoint, and I guess this takes us into the wider discussion, it’s just so obvious that it’s important to have patients and patients stories at the center of this debate, this very difficult debate that’s going on now about funding research of all different kinds, especially cancer research.
And this is not news to anyone in journalism or anyone in the cancer community. We’re not trying to preach to the choir, and people already know this, but we’re just trying to make it somewhat easier and to augment efforts to do this.
Sara Willa Ernst: You mentioned that it was somewhat obvious, but when Peter came to you, was there anything specific about the pitch, specific about PACR’s mission and its approach, that specifically attracted you to want to join the board?
Laurie McGinley: I just remembered this right now, so thank you for the question.
One of the things that he said to me was that he was thinking about the days of the AIDS epidemic and his involvement in that and how the advocates and activists effectively used patients and patient stories to make an impact on that.
And that really struck home because, when I was at The Wall Street Journal, we did a lot of coverage of AIDS, and part of it was from… It was The Wall Street Journal. So, part of it was from a business standpoint, because Merck was racing ahead and developing these AIDS drugs, but obviously, the stories that we were trying to do were about the impact on the patient. So, we relied heavily on patient stories for those stories.
So, maybe that was part of the hook. And then, part of the hook was just that I had done a fair amount of cancer reporting when I was at The Post.
Jacquelyn Cobb: Honestly, this is probably a question for maybe both of you. This was also a landmark story for me, as well. It was my first cover story that I was a solo editor on, so it was big for me too. And, I think, when I was editing, I was struck by, as Sara and I were trying to write this story, we were trying to really dive into tracing actually how federal dollars did impact our main character, Chris Biggar, and it was really hard.
It’s not easy to actually trace these dollars, because so much is basic science that goes back decades, and you have to really be an expert in science to understand how all those things connect.
And then, there’s also, we’ve had all the conversations about indirect costs and supportive structures, the fact that academic cancer centers exist, there’s all of these things that come together to produce, I don’t want to quite say “cures,” I mean, occasionally cures, but you know what I mean. Really effective treatments.
And so, yeah, I just wanted to talk about that a little bit, about how PACR is… It’s a big undertaking, but it’s really important, and I think one of the quotes that Peter gave really drove this home for me was, “People are failing to make that final connection of actually how these dollars are being connected to patient stories.”
So, this is a question for either of you. I mean, Sara, you wrote the story, and Laurie, you’re in the heat of it.
Sara Willa Ernst: I’m very curious what your answer is, after years of healthcare reporting and whether you’ve run into these challenges. But, yeah, we had a main patient share his story, Chris Biggar. He was diagnosed with stage 4 metastatic colon cancer when he was at the age of 34.
And it was a very, very chaotic period of time of his life. He had just moved to a new state. He had acquired his dream job. He’d lived in Ohio his whole life, and he was like, “Okay, I’m going to finally try something new, go on an adventure, move to North Carolina.”
And then, within just a couple of months, he gets this massive diagnosis and it totally upends his life. But actually, relatively quickly, I think within the span of a year or two, he was actually able to become cancer-free, in large part because of immunotherapy. He had MSI-high [colon cancer], a specific type of mutation that made him a very good candidate for nivolumab, and I never know how to say this, so I’m just going to say it the way that everybody has told me how to say it, but they just abbreviate it and call it “ipi” [ipilimumab]. So, nivolumab and ipi. Not even going to try the full name.
Jacquelyn Cobb: It is a tough one.
Sara Willa Ernst: And so, I had this information about the drug that he was on. I had this information about his particular diagnosis and how do I take this final human story and connect it to the whole history? I mean, some of it’s more recent, because nivolumab and ipi was just approved by the FDA this year for metastatic colon cancer with MSI-high/MMR-deficiency mutation.
So, this is brand spanking new, but obviously, cures don’t happen, or effective treatments, as Jacquelyn said, don’t happen overnight. So, how do I reverse engineer and figure out what led up to this pretty much life-saving treatment for Chris Biggar?
And we took one step back and we learned about specifically identifying this mutation and its connection to effective immunotherapies. And that, in some ways, the mutation is more important than specifically where the cancer is and what tissue the cancer is affecting in the body. So, this tissue agnostic discovery happened relatively recently with some folks at Johns Hopkins University. There were other collaborators, too, but Johns Hopkins led the study with Dung Le and also Luis Diaz. And that was pretty integral into what Chris Biggar really benefited from.
But if you even take it a step further, there’s decades before that, including what Jim Allison discovered. There were so many names that came up, but we really tried to condense it as much as possible in the story. But a lot of the process was just asking people, “Do you know where the funding came from? Do you know what are the seminal papers, what were the big discoveries along the way?” And people were just very vague about it.
I think they understand certain names, they understand certain labs, but to be like, “This specific paper,” it’s hard to pin down. And so, it took a lot of trial and error, talking to a lot of people, and it doesn’t sound like the specifics. I think the general ideas are often understood, but the specific grant number or the specific grant name was really hard to track down. And I’m wondering, Laurie, have you encountered anything like that?
Laurie McGinley: Well, I’m so interested that you talk about this because I love the story, in part because you went back the next, you kept asking, “How do you connect this? How do you connect it?” Which is something that we’ve talked a lot in PACR meetings and how important it is.
I think the short answer is, you have to keep asking the question. You have to keep going another layer deeper to try to get the answer and keep calling, and I think maybe part of our… That’s hard for reporters who are on deadlines, or for people on the hill to find the right, where are all these links? It can take, you probably found out, days and days and days if not longer to find out.
So, I do think that we might be able to help reporters do that because of the great knowledge of some of the people who are involved in it—you know Ned Sharpless, former NCI director, is on the board and all that.
So, one of the goals would be to help. I’m not minimizing it. It’s not easy. It won’t be easy for us. Isn’t it easy for reporters, isn’t easy for congressional aides or anything.
But I also love the story, because I also wrote about that drug and about that particular genetic mutation and about a young woman who was going to basically, she was 23 or 24, and she had stage 4 colon cancer, and she was going to die. And she was basically dismissed by another very major cancer center whose name I will not mention, and her sister found a study somewhere that showed that Johns Hopkins was working on that particular problem in a clinical trial. She got into the clinical trial, her name is Stephanie Joe, and she survived and she’s fine now. And it’s just amazing.
But, I have to say, I don’t think, in that story, I linked it to NCI funding, I think I focused mostly on what was happening at Johns Hopkins. And then, separately, in other stories, I talked about Jim Allison, who was the great pioneer of immunotherapy and checkpoint inhibitors, and I wrote about him and I wrote about his rock band and Rockabilly band and all his discoveries and his awards and everything. I’m not sure, I don’t know, maybe I mentioned that he got NCI funding. I’m not even sure that I did or not. So, this is bad on me, and it’s kind of interesting when I look back on it. I’m not sure that I made the connections when I was working as a reporter, and maybe it didn’t matter because NCI funding was going up.
Sara Willa Ernst: Yeah.
Laurie McGinley: But maybe it actually matters now because there’s such a debate about how we’re going to spend money or how we’re going to dole out funding and how many grants we’re going to do now, and how many grants, whether we’re going to pay them all up front or pay them partial, and every single policy and funding decision has an impact on the number of grants that go out. So, yeah, I think it’s hard. I don’t think I did it very well. I mean, I did okay as a reporter, but I don’t think I did that particular thing particularly well.
Jacquelyn Cobb: Well, I think you really touched on something because, as we were reporting it, Dung Le did receive a lot of funding from philanthropic donations. There is an ecosystem of funding here. And I think, like you said, it really wasn’t something that we had to focus on as reporters prior to this year. I mean, of course, there’s been ups and downs with NCI funding, but cancer has always been bipartisan. It’s always been very well funded. There was the Cancer Moonshot, and of course, I’m coming into this relatively recently, but it’s never been a question. It’s because everybody’s affected by cancer. It’s always been this, “Yes, of course we’re going to fund it.” And I think you’re so right, that that is… We were really taking it for granted that it was, “Of course the government’s going to fund oncology, why wouldn’t they?”
And I think that, to be fair, I do think that Congress has signaled that they are continuing to support oncology, but it’s just getting swept up. And this is, I’m quoting Peter here as well, but it’s getting swept up in all of the broader and the broader debates about science funding and biomedical research funding and all of that messiness. And hopefully, it will be fine. We have to see what happens. But, I do think that that is just reminding people that federal funding does make this all possible, because yeah, Dunlea, the primary funding was through philanthropic donations for that trial. But, like we said in the story, it couldn’t have happened not at an academic cancer center. The academic cancer center… I mean, maybe they could have figured it out, I’m sure, but they rely primarily or heavily, excuse me, on federal funding. The body of work, the basic science that led to Dunlea and her researchers’ or her colleagues’ hypothesis was based mostly on basic science, often funded by NCI. And take Jim Allison, just as an example. Do you have this, Sarah, the sentence? This was-
Sara Willa Ernst: I’m looking it up right now.
Jacquelyn Cobb: It was so good. It was so good.
Sara Willa Ernst: Yeah. So, even though Dung Le, her research was mostly funded by philanthropy, Jim Allison had a lot of money from the NIH and NCI. Can I pull this up? In the story, we write that his research was funded, received 13.7 million from NCI and NIAID, and he received that funding since 1979.
Jacquelyn Cobb: Yeah, he’s been continuously funded, which makes sense. Nobel Prize winner, of course, but it’s just, and I think that’s what’s so interesting about you talking about remembering that is before, that was like, “Yeah, of course.” And now, it’s like, “Wait, no, we need to really hone in on that.”
Laurie McGinley: You can’t take it for granted anymore. And you’re right, it looks as though Congress is going to at least maybe do flat funding, but the problem is, nothing is certain. The only thing that is certain is that nothing is certain right now in Washington, and the White House has said that it does not have to spend appropriated funds. They’ve made that argument. So, you have that, and then, as we discussed, and you have discussed the policy changes in terms of how the funding, and it’s not that things might not need be changed or reformed or improved in the funding mechanism. I have no idea whether full funding of many grants upfront is a good idea or a bad idea from a budget standpoint. Maybe it is. I don’t know. I just know that, based on what I’ve read in The Cancer Letter and also in The Washington Post by my former colleague, Carolyn Johnson, it’s just creating, just reducing the amount of grants that are going to go out this year by hundreds.
Jacquelyn Cobb: Yeah. Yeah, yeah. The pay line is like 4% this year, which is… I’ve never heard of anything that low. It’s a historic low, and it is largely because of that. They got the news in, I think, July that they have to do, what is it? I have to remember the specifics, but I think it’s 50% of the grants this year have to be front funded. Funded for the full five years, this year, and there’s limited money. You can’t do five years and also do one year for as many as we wanted to before that news.
Laurie McGinley: Yes. Can’t spread it around as much.
Jacquelyn Cobb: Exactly. So, yeah, definitely. And I think that’s a good point as well. Congress might support, and support, like you said, flat funding in a normal year would be terrible news. So, our metric has changed a little bit, but the policy changes are also having an impact as well. So, absolutely. Laurie, I would love to hear what you’re looking forward to with PACR. What’s on the horizon for you guys?
Laurie McGinley: What I’m really excited about is actually, because I enjoyed it as a reporter, so, I think this would be fun, is working with different partnerships and different groups and seeing if we can work with the cancer centers and some advocacy groups and build some partnerships, not to take away any credit from them. We’re happy to try to highlight for everyone how much, what they’re doing to take care of, help patients, but to try to maybe streamline the process a little bit to make some connections between journalists and patients. And so, I’m excited about that.
And the website also, which if I can put in a plug for the website, which is www.action4cancer.org. That’s where patients can go and hit a button and tell us their stories. And then, we basically have these wonderful volunteers who are calling them up and interviewing them and finding out whether the stories seem to be appropriate and whether there might be any journalists who are interested in it.
So, we are at the very beginning of this, so, give us time. But I’m excited that that might really blossom into something helpful.
Sara Willa Ernst: One question I do have is, we’ve talked about making that final connection and that being like a central tenant of PACR, and then, also trying to help journalists find patients. I mean, I know from firsthand experience that sometimes that’s the hardest part of the story. All of the technical information. You can call somebody up and they can explain it to you, but trying to find a real person who is willing to share their own personal story. And obviously, when it comes to being a cancer patient or a cancer survivor, this is one of the most vulnerable periods of their life and they’re just volunteering to share it with everybody. I’m wondering, in your experience as a journalist, have you run into any issues with that? I don’t know if you’ve talked to any of the PACR patients so far, but has there been a reluctance at all in terms of being public about their story? Or has it been more of a cathartic experience for them?
Laurie McGinley: That’s a really good question, and I would say both. Both as a reporter. Of course, patient stories, as you know, can either make or break a story. I mean, it’s one thing if you’re writing about a study, New England Journal of Medicine study, where you’re just doing a fast hard news hit on something. But if you’re doing something that you’re trying to get substantial space in the publication or whatever, you have to have, for a general interest publication, you have to have a patient story. And I’ve had really good stories just die because I don’t have a good anecdote or narrative for whatever, because the patients have all kinds of reactions to it. Some of it really do feel, get great gratification and relief in telling their stories, but others are very private, and you can 100% understand that. And I’ve gotten way down the road with cancer patients who at the last minute have decided not to be in the story, and I’m always like, “Totally fine. It’s totally up to you.”
And I think that the volunteers who are looking for patients and talking to them are coming… They’re running into the same thing. Some people are very excited about the process and happy to, this is kind of an easy outlook for them if they can figure out how to access it, but others either don’t want to talk about it or they don’t want to tell their story publicly, or they don’t want to give us a picture, or things like that. And I understand that completely.
And that, of course, is not limited to cancer patients. That can be for, because I’ve had that happen with people who have Alzheimer’s. I’ve even had it with people who have high cholesterol, don’t want to talk about it because they’re afraid they’ll be discriminated against at work or something. So, you have to be very careful and make sure that they understand what the purpose is and how it might be used so there isn’t any upset at the end.
Jacquelyn Cobb: Well, thank you. It has been really-
Sara Willa Ernst: Thank you.
Jacquelyn Cobb: … a joy to talk with you. Like we’ve said, just even as a journalist, just picking your brain, it’s been a really fun time. So, thank you, and, yeah.
Laurie McGinley: Thank you. Thank you so much. Really appreciate it.
Jacquelyn Cobb: Thank you for joining us on The Cancer Letter Podcast, where we explore the stories shaping the future of oncology. For more in-depth reporting and analysis, visit us at cancerletter.com. With over 200 site license subscriptions, you may already have access through your workplace. If you found this episode valuable, don’t forget to subscribe, rate, and share. Together, we’ll keep the conversation going.
Paul Goldberg: Until next time, stay informed, stay engaged, and thank you for listening.
