In this episode of The Cancer Letter Podcast, Fran Visco, president of the National Breast Cancer Coalition, and Jacquelyn Cobb, managing editor of The Cancer Letter, discuss the Metastatic Breast Cancer Act, bipartisan legislation that would eliminate the waiting periods for Social Security Disability Insurance and Medicare for eligible people with metastatic breast cancer.
This episode is available on Spotify, Apple Podcasts, and Youtube.
“We realized a number of years ago that women and men with metastatic breast cancer can have access to Social Security Disability and Medicare, regardless of age, that they automatically qualify. It’s a qualifying condition under SSDI. We also realized that there is a wait time. There is a four month wait for Social Security Disability and then 24 month wait for Medicare. And this is in a population that has an average lifespan of about 36 months. So it made no sense to us, and I don’t think I’ve spoken to anyone who told me it made sense to them, even on Capitol Hill,” Visco said.
Visco describes the real-life consequences of the waiting period, which includes patients with metastatic disease who continue to work despite being too sick to do so because they need employer-sponsored insurance to access lifesaving treatment.
“So why? We can’t answer that question. We don’t know why that happened. But the question we’re asking now is why do they have to wait? This is ridiculous. We’re not asking to expand an entitlement program or anything like that. They have paid for this benefit. They’re entitled to it, and yet it’s being withheld from them for some unknown reason, probably cost, and that is not a sufficient reason to deny a paid-for benefit to a dying group of people.”
Visco said the legislation has attracted 268 bipartisan House cosponsors and support from about two-thirds of the Ways and Means Committee, but has yet to receive a markup.
“I can’t understand how this country would allow it to happen, that women and men who are going through this, and who qualify for care, are not getting it,” said Visco. “Maybe we should call it a war and do something to get their attention because they seem to be able to fund wars quite well. So, how about funding something that can save lives?”
This episode is sponsored by the American Society of Clinical Oncology. Learn more at https://quality.asco.org/
Stories mentioned in this podcast include:
- Scientific progress can’t help people if they can’t access care
- NBCC’s open letter to Ways and Means demands markup for Metastatic Breast Cancer Access to Care Act
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…
Fran Visco: I was diagnosed with metastatic breast cancer in March of 2024. I am over 65. Obviously I have access to Medicare and I’ve been fortunate my entire life to have access to quality healthcare, but I cannot imagine what it is like living with metastatic breast cancer and having to worry about accessing care. I just can’t because every moment of every day, I’m inundated with new worries, with new side effects, with new drugs. It’s constant, constant, constant.
I can’t understand how this country would allow it to happen, that women and men who are going through this, and who qualify for care, are not getting it. Maybe we should call it a war and do something to get their attention because they seem to be able to fund wars quite well. So how about funding something that can save lives?
Paul Goldberg: You’re 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: Hello, everybody. Today we have Fran Visco here with us today, president of the National Breast Cancer Coalition, to talk about a guest editorial she penned in last week’s issue of The Cancer Letter, along with Michelle Tregear, who is chief programs officer at NBCC, about the Metastatic Breast Cancer Act.
Thank you so much for being here. And I was wondering if we could start with just an explanation of what the act is and what it’s trying to accomplish and what the problem is.
Fran Visco: Sure. I mean, thank you very much for having me. We realized a number of years ago that women and men with metastatic breast cancer can have access to Social Security Disability and Medicare, regardless of age, that they automatically qualify. It’s a qualifying condition under SSDI. We also realized that there is a wait time. There is four months wait for Social Security Disability and then 24 months wait for Medicare. And this is in a population that has an average lifespan of about 36 months. So it made no sense to us, and I don’t think I’ve spoken to anyone who told me it made sense to them, even on Capitol Hill. So why? We can’t answer that question. We don’t know why that happened. But the question we’re asking now is why do they have to wait? This is ridiculous.
And so we looked at legislation that waived those waiting periods for ALS and we looked at the bills, the laws that waived the waiting periods and we said we should do this for metastatic breast cancer patients.
Every year, there’s about 20,000 or so women who are diagnosed with metastatic breast cancer. We don’t know how many of those women would be eligible for SSDI and Medicare. We know that there are men every year who are diagnosed with metastatic breast cancer. We don’t know how many because there are so many fewer men that those statistics are almost impossible to find. So we don’t know how many of them would be eligible. But what we recognize is that this is a benefit that these individuals qualify for. We’re not asking to expand an entitlement program or anything like that. They have paid for this benefit. They’re entitled to it, and yet it’s being withheld from them for some unknown reason, probably cost, and that is not a sufficient reason to deny a paid for benefit to a dying group of people.
And so we wrote a bill comparable to the bill that waived the periods for ALS and we’ve worked hard now for four congresses to get support for the bill. And it’s a simple bill. The bill will waive those waiting periods for eligible individuals. Again, not expanding anything, but making certain that people who have paid for these benefits now will have access to them in a timely manner.
We’ve been pretty successful in getting support on the Hill. As of today, we have about 268 bipartisan members of the House who are supporting this bill. And we have, I think it’s two thirds of the Ways and Means Committee bipartisan supporting the bill, but we haven’t been able to get a markup and we haven’t been able to get this bill enacted into law. And we really can’t get an answer as to why, but we keep pushing.
Jacquelyn Cobb: Yeah. I wrote the cancer policy about the fact that you guys can’t get a markup when it has bipartisan support. I know you just said that you can’t really know why. Do you have any guesses or is it just we have to get attention on this and hopefully it’ll make it onto their desks?
Fran Visco: The reason we’re given by people in the Hill keeps changing. So one moment it’s we don’t have a CBO score. We can’t get a CBO score, Congress can. So it’s been years now we’ve been asking you to get a CBO score. Why not?
Jacquelyn Cobb: Oh, my gosh.
Fran Visco: And the bills do get marked up and passed without a CBO score.
Jacquelyn Cobb: So it’s possible.
Fran Visco: Another time we get the argument, “If we do it for you, we’ll have to do it for everyone.” Okay. Congress should do it for everyone, but you’re not going to do that. And so right now, we have this bill that we’ve built incredible support behind and political will behind this. Let’s get this done and then we can answer the question about everybody else. So those are the only reasons that I’ve been given from people on the Hill that really don’t know why not.
Jacquelyn Cobb: Yeah. Yeah. Well, it’s frustrating, but I’m glad to hear that it’s at least bipartisan and it seems that there’s support. And hopefully with more attention, it’ll get their act in gear a little bit.
I was wondering if you can… And I think that you did detail a bit of this, but just to get a patient’s perspective, do you think that you can walk us through what actually happens to a patient when they are waiting for this in these 29 months? What does this gap in coverage actually look like?
Fran Visco: Well, we have a number of different stories, and you can find them on our website, people who are going through this right now. So there are some people, one woman, her story, she has metastatic breast cancer. She’s very ill, but she continues to work. She’s pushing herself to work so that she can access insurance and that she can support her family, but she should not be working.
Jacquelyn Cobb: No.
Fran Visco: And she’s getting to the point where she won’t be able to. And then the question is, how do I access the care that I need to extend my life?
Jacquelyn Cobb: Oh, my gosh.
Fran Visco: We have a number of people in that situation, that they push themselves to maintain their insurance coverage because they need access to care.
I was diagnosed with metastatic breast cancer in March of 2024. I am over 65. Obviously I have access to Medicare and I’ve been fortunate my entire life to have access to quality healthcare, but I cannot imagine what it is like living with metastatic breast cancer and having to worry about accessing care. I just can’t because every moment of every day I’m inundated with new worries, with new side effects, with new drugs. It’s constant, constant, constant.
I can’t understand how this country would allow it to happen that women and men who are going through this, and who qualify for care, are not getting it. Maybe we should call it a war and do something to get their attention because they seem to be able to fund wars quite well. So how about funding something that can save lives?
There are data, there are studies that have been done that show people, this group within the period of time of the waiting period die at a higher rate than the population-
Jacquelyn Cobb: Wow.
Fran Visco: … because they don’t have access to care. We know that not having access to insurance shortens your life. You die sooner because of that. So we have the data, we have the powerful stories of people who are going through this. We have bipartisan support.
Jacquelyn Cobb: Yeah. What else do you need? Yeah, what else? Yeah. Yeah, absolutely. And I thank you for sharing the stories. Obviously the access to care, but also just the quality of life, like you’re saying, managing a diagnosis becomes a full-time job. And then you mentioned people with families and children to care for.
Fran Visco: Yeah, It’s really bad. It is. And again, there’s no reason for it, except money, and Congress tends to find money when they want to.
Jacquelyn Cobb: Yes, yes, yes, absolutely.
Join colleagues who are dedicated to high standards in cancer care at the 2026 ASCO Quality Care Symposium. ASCO hopes to see you in Boston from October 16th to 17th where they’ll dive into solution-oriented sessions and you’ll walk away with actionable insights. Secure your spot today at quality.asco.org to stay at the forefront of this ever expanding field.
And then the other side of this, and this was in your guest editorial last week, was calling on the oncology research community. And I’m going to read. It might feel a little funny to have this read out loud to you, but just for listeners, I just wanted to read a quote from your article last week and I thought it summed it up really well. You said, “The purpose of cancer research is not publication, discovery, or drug development for its own sake. Ultimately, it must prevent suffering and save lives. This is not a choice between advocating for research or advocating for access. We must do both. And this act is an opportunity to do that.”
And so I just wanted to put that in here because I think it’s really important and necessary. But I was wondering if you could talk a little bit more about what the cancer research community is. I don’t want to villainize them. Obviously, like you said, you want both of course, but what they are maybe getting wrong about policy implementation and what they can do.
Fran Visco: Well, let me say this. Every day just about, I get an email from some professional association about how we have to contact Congress because they’re going to cut scientific research funding or attack the integrity of science. I get those emails almost every day. And we very much believe that we need to raise our voice in partnership and collaboration with the research community to oppose those policies, and we do. I mean, they’re among our priorities, among NBCC’s legislative and public policy priorities. We’ve gone to rallies. We participated in press conferences. We’ve been up on the hill talking about it, but always with the message that this is a tool toward the goal of saving lives. It’s not the be all and end all.
And we could fully fund research to the extent that every scientist wants us to, and we may not save any lives because we need the policies that people have access to the results and the fruits of that science and that research. And we need that community, the research and the clinical community to step up and raise their voices about access to care, and in particular this bill at this moment.
It’s not about increasing payments for oncologists. It’s not about increasing the pay line at NIH or NCI. It’s not about that right now. Right now, it’s about making certain that your patients and the public that you’re supposed to be working for have access to the care that can extend their lives and increase their quality of life. And we need those voices at the table with us.
Jacquelyn Cobb: Yeah. Yeah, absolutely. That makes so much sense. I was at ASCO, I think, my first year at The Cancer Letter, and I heard someone just in casual conversation say that if they could choose between finding a cure for all cancers or just making sure that all of the treatments that we have actually reach the people they need to in a way that they’re meant to, that they would actually choose the latter because a cure for all… And I mean, obviously there’s a lot of… But the idea is that access is… A cure doesn’t do anything if it doesn’t reach patients.
Fran Visco: If it doesn’t reach people, absolutely.
Jacquelyn Cobb: Yeah.
Fran Visco: I don’t want to diminish science or the work that incredible researchers and clinicians do at all.
Jacquelyn Cobb: No. Yeah.
Fran Visco: But that is not the be all and end all. I mean, that is not the goal. The goal isn’t to say, “Look how successful we are. We’ve gotten $300 million for breast cancer research in the budget.” That is a step along the way to saving lives, but saving lives is really what we need to focus on.
Jacquelyn Cobb: Well, thank you so much, Fran Visco, for being here. This was a wonderful conversation. So, so, so important, and I am so grateful that we get to amplify your message. Thank you for being here, and I will certainly be in touch in the future.
Fran Visco: Thank you very much for having me. Thank you.
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.
