Recently, a wave of new private insurance mandates have swept the nation making fertility preservation a covered benefit for people with cancer in 21 states plus Washington, DC.
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Mia Sandino, an osteosarcoma survivor, chose not to undergo fertility preservation when she was diagnosed at 19. She didn’t know if she wanted kids, had no guarantee that her insurance would cover the extraordinary costs, and feared postponing treatment would delay her return to “normal life.”
This episode is available on Spotify, Apple Podcasts, and YouTube.
On this week’s episode of The Cancer Letter Podcast, Sara Willa Ernst, a reporter with The Cancer Letter, spoke with Claire Marie Porter, reporter, on the nuances of insurance coverage for oncofertility around the country, and the barriers that persist, especially for young people with cancer.
“This is a certain kind of existentialism that a lot of young people are faced with. Add on top of that, a cancer diagnosis,” Sara said on the podcast. “It’s really an unfair position that a lot of young people are put into, especially when it’s not covered by insurance—it’s not a question of ‘Do I want to freeze my eggs or not?’ It’s more of a question of ‘Do I even have the choice to?’”
The American Society for Clinical Oncology first created a standard-of-care guideline for fertility preservation for cancer patients in 2006, deeming it a medical necessity.
“But the reality is that in the U.S., most people just don’t have benefits that cover this, and it’s extremely cost prohibitive,” Claire said.
As the oncofertility conversation becomes normalized, the coverage gaps for cancer patients become more glaring—augmenting the already existing burden of financial toxicity many patients carry.
Other stories mentioned in this podcast include:
- Oncofertility coverage mandates expand to 21 states and DC as political momentum builds
- Shane Jacobson talks about his to-do list for ACS
- Mikkael Sekeres: My introduction to, and lessons learned from, Rick Pazdur
- Montefiore Einstein Director Edward Chu dies of glioblastoma at 66
- Arnold D. Kaluzny, longtime adviser to the NCI and health services researcher, dies at 87
- Meeting the moment: ASCO GI Cancers Symposium delivers insights and collaboration
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: This was a certain existentialism that a lot of young cancer patients were faced with. I mean, I’m 29 right now and I’m considering my own family building and what I want for my future. And trust me, there is a lot of existential dread going on right now. But obviously, add that on top of it, like a cancer diagnosis, which in and of itself raises so many different types of existential questions.
And so, it’s really an unfair position that a lot of young people are put into, especially when it’s not covered by insurance. It’s not necessarily a question of whether I want to freeze my eggs or not. It’s more of a question of do I even have the choice to, for a lot of people. And that tends to be the situation that the vast majority of folks find themselves in, because this is just largely not covered by insurance.
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.
Claire Marie Porter: Hi, Sara.
Sara Willa Ernst: Hey.
Claire Marie Porter: Hi. So, Sara and I have been working together a lot this week, reporting on a reporting project, a co-reporting project. And we’ve actually just finished publishing our Friday issue, so it’s all fresh in our minds. We’re recording early to get ahead of the holiday break next week. We have a lot to talk about, so I think I’m just going to power through the headlines and then we can jump right into it. So, story one was reported by Sarah and myself on Oncofertility and coverage mandates that have expanded to 21 different states and D.C. due to political momentum. Story two is a Q&A between Shane Jacobson and Paul Goldberg. Shane Jacobson is two months into his job as CEO of the American Cancer Society and American Cancer Society Cancer Action Network, or ACS CAN. And he talks about his to-do list for ACS. And then we have a guest editorial by Mikhail Sikaris about Richard Pazder.
We also have two obituaries this week. Montefiore’s Einstein Director, Edward Chu, died of glioblastoma at age 66. And Arnold D. Kaluzny, longtime adviser to the NCI and Health Services Researcher died at 87. And then we also had a sponsored article by ASCO on GI Cancers Symposium. Story one, Sarah and I have been reporting this story for a few weeks on Oncofertility mandates in the U.S. There’s a lot of heavy lifting, especially on the policy side of things, which Sarah shouldered. And I really want to talk to her about that. But I think first I just wanted to introduce our main narrative character for the story, Mia Sandino, who is this lovely, glamorous 26-year-old living in LA with her cats or many cats. And she has been living with osteosarcoma for about seven years.
Mia Sandino: It has reached the point of incurability. She found out in September 2022. And actually, she’s a regular on a podcast as well. Osteo is the name of their podcast, it’s called. It’s spilling the T on osteosarcoma. And that is hosted by MIB Agents. You can check out her story from her own perspective there. But she’s so articulate and good at this and better than me, so we’re going to actually include some of the audio from the interview that I had with her and let her talk in her own voice.
I have stage three metastatic osteosarcoma that was first diagnosed in September of 2018 as stage one. I had a two and a half inch tumor break through my right proximal tibia. And being a very naive and invincible feeling 19-year-old, I didn’t put two and two together that this area of the knee that I had sprained could be something other than an injury that I had acquired or re-aggravated by walking up and down stairs and living on the third floor of my sorority house. And Seattle’s very slippery when it rains. It was very easy to think that I had just re-aggravated a previous MCL sprain of that leg. And it was my right proximal tibia, so meaning the inside of my right tibia.
And so, it was a very similar area to where I had sprained it previously, so it was very hard to differentiate that pain. And once they found the tumor, I was a little bit of a different case than the usual osteosarcoma patient, because when they went in to do my bone biopsy for the tumor, it actually came back as a benign giant cell tumor. And it wasn’t until after they went in and fully took out the entirety of the tumor that they realized that the back half of it had mutated into osteosarcoma.
Claire Marie Porter: So, I mean, this story, it’s about fertility and Oncofertility, but it’s also about all the gray areas, and the nuances and questions, especially for young people surrounding the oncofertility conversation, which is kind of new, by the way. ASCO only first created a standard-of-care guideline for fertility preservation for cancer patients in 2006. And there’s been some updates since then. But in those first guidelines, they deemed fertility preservation for cancer patients as medically a medical necessity. But the reality is that in the U.S. most people just don’t have benefits that cover this, and it’s extremely cost prohibitive. So, we’ve had this paradigm shift, which is a word that Paul does not love, but that’s what’s happened.
Sara Willa Ernst: Paradigm shift, he’s not here.
Claire Marie Porter: Paradigm shift, I like it. Where on Oncofertility counseling, the conversation in the clinic is becoming more normalized. But then we have this paradox where we have these informed patients now who are looking at extraordinary costs on top of the financial toxicity that already exists for cancer treatment. And so, it’s kind of like adding a layer to the financial burden and their insurance doesn’t cover it. So, that’s where we’re at. In Mia’s case, she needed to stop her schooling. She was on the MD, PhD neurobiology track when she was diagnosed just a few weeks before starting her sophomore year and had to withdraw. She was presented with fertility preservation options at the get-go in her first appointment, like diagnosis. And also, we can retrieve your eggs if you’d like. But ultimately, decided not to undergo fertility preservation. There was just too many uncertainties.
She had no idea if her insurance would cover it. Had no idea if she really wanted kids in the future. And most importantly, it would’ve delayed her treatment for about six to eight weeks. So, that’s Mia’s story. The news here is that there is this wave of new state mandates requiring private insurers to cover fertility preservation for cancer patients. And I’m going to shut up and I’m going to let Sarah talk about that, because she really did a lot of the heavy lifting in that area. I wanted you to first talk about your reporting experience, how you found your sources, and then whatever you think is most important about this.
Sara Willa Ernst: Yeah. Well, I guess I’ll just first start off on my initial impressions when you first came to me and you were like, “Hey, there’s a story that I want to report on.” And I had never even heard of Oncofertility before. I wasn’t aware that this was a certain existentialism that a lot of young cancer patients were faced with. I mean, I’m 29 right now, and I’m considering my own family building, and what I want for my future. And trust me, there is a lot of existential dread going on right now.
But obviously, add that on top of it, a cancer diagnosis, which in and of itself raises so many different types of existential questions. So, it’s really an unfair position that a lot of young people are put into, especially when it’s not covered by insurance. It’s not necessarily a question of whether I want to freeze my eggs or not.
It’s more of a question of do I even have the choice to, for a lot of people. And that tends to be the situation that the vast majority of folks find themselves in, because this is just largely not covered by insurance. But that’s slowly changing because of the advocacy work that has happened over the past 20 years. I was able to speak with two advocates who are also cancer survivors themselves, and they’ve been working on this for a long time. They’ve been going to lawmakers offices across the country. They’ve been canvassing in their districts, just man on the street, handing out flyers. They’ve been really trying to find champions in state houses, like people that care about this issue. And then getting them to go on the Senate floor and to fight for these bills or to go talk to the governor and be like, “Hey, we should pass this in the budget.”
Those two people are Amanda Rice with the Chick Mission, and Joyce Reinecke with the Alliance for Fertility Preservation. And Joyce has been in this for a long time. She was first diagnosed with cancer in 1998. And around that time, I mean, it was barely on the radar of physicians. I mean, from her anecdotal experience, she found out at what she said was the 11th hour after she had gotten surgery and before they were having conversations about chemotherapy. She actually didn’t end up getting chemotherapy in the end, but it was a possibility that she was talking about with her physicians. And very last minute, they were like, “Hey, by the way, this might affect your future ability to have children.” And since then, she has been really trying to work towards physician education, making that towards the standards of care.
Another big thing that advocacy groups have done are build financial aid programs, whether that’s through philanthropic donations to try to self-pay, to provide the funding to self-pay. But they’ve also negotiated rates with pharmaceutical companies or partner clinics to try to get the price down for these particular patients. I would say the more recent advocacy wave has really centered on these insurance mandates on the state level. And the first insurance mandate passed in Connecticut, in 2017, so it’s been about 10 years in the making. And we see so many different types of bills. There are bills that cover all different types of people where this is medically necessary. So, not just cancer patients, but also sickle cell patients or lupus patients.
We see other bills where it is strangely just breast cancer and ovarian patients, which doesn’t really make a lot of sense because your fertility can still be affected regardless of the specific tissue type, the kind of cancer that you have. But in a lot of ways, advocates are like, “We’ll take whatever win that we can get and some coverage is better than no coverage.” And it’s this process of slowly chipping away at it. Maybe first they’re going to focus on a bill that just focuses on ovarian and breast cancer patients. Next level might be, let’s try to expand Medicaid coverage. And I’ve also heard some whispers about a potential effort to work on a federal mandate. So, there are all these different types of bills all across the country, and it’s this real patchwork of insurance mandates. Some states have it, some states don’t. And there’s a variation in all those states as to what is actually required and what isn’t.
Claire Marie Porter: Yeah. I always think about navigating insurance as a healthy adult, I guess, is hard enough. I can’t imagine trying to navigate all these things. It’s so layered and so nuanced. Depends on where you are, depends on where you are in your diagnosis. And just the amount of choices, the decision fatigue I can only fathom.
Sara Willa Ernst: Even when there are bills that require insurance mandates, there are still a lot of bumps in the road. So, your insurance company might require an infertility diagnosis, which a cancer patient who hasn’t gone through chemotherapy yet wouldn’t necessarily have. Plus, the timeline of the whole thing. When somebody’s diagnosed with cancer, they’re running against time. They’re trying to get into treatment as quickly as possible and everyday matters. And so, going through the process, the procedural process of getting a diagnosis, submitting it to the insurance company, having them deny it, this whole thing really has some measurable impacts on people’s treatment as well.
Claire Marie Porter: Yeah. It truly is a part of the financial toxicity conversation, which I could go on about forever. It’s just so vast and multifaceted. But one thing that I found really interesting about your reporting, and I guess I kind of knew this already, but seeing it laid out state by state was really interesting, is that this is truly a bipartisan issue. We’re in this political climate right now where the president is championing fertilization, calling himself the fertilization president, expanding IVF access. We’re having this huge decline in birth rates. So, you’d think that these policy changes would be a little bit more easy coming. But from your reporting, why is it such a slog? Why has this been taking so long to get these into effect?
Sara Willa Ernst: I can’t say with 100% authority, but my gut instinct is that this is just the reality of the legislative process everywhere, in towns, and cities, and states, and then on the federal level too. It’s that you have to find somebody who really cares about the issue, who has a personal connection. A lot of the advocates that I talked to, they said, “Oh, okay. We were able to find a lawmaker who had their own cancer journey,” or had a friend who went through this entire experience themselves, or was the mother or the daughter, or just had some kind of personal connection where they got it, or even that they had a constituent in their district. And so, at the end of the day, you just need somebody to fight for you. And part of the art of advocacy is finding that person. And it might take a lot of time.
Claire Marie Porter: Yeah. There’s one advocate, too, that you introduced, but I wanted to know more about, Amanda Rice. She had her own extraordinary costs that she paid for her fertility journey. Could you talk a little bit about that?
Sara Willa Ernst: Yeah. So, she ended up going through three rounds of egg freezing, and that cost her about $55,000 out of pocket. She’s very fortunate. And she said this, she felt very grateful that she was able to afford that. She works in finance in New York City. And she did have insurance during all three times and different insurances, and all of them got denied. Including at one point her insurance explicitly offered fertility benefits, but because she didn’t have that infertility diagnosis, she was denied. So, she had to pay out of pocket. And understanding that this is really not feasible for the vast majority of people out there is what motivated her to work on the Chick Mission and to start the advocacy organization.
Claire Marie Porter: Yeah. It’s just a huge amount of contradictions. Well, and I should mention, too, kind of a last variable in this already extremely complicated landscape of Oncofertility is that cancer incidents is also rising in younger people right now. So, we’re kind of at this moment where there are going to be more cancer survivors than ever entering into this cancer as a chronic disease territory.
So, this issue I’m predicting, if you will, will become increasingly more prevalent and more important. So, to circle back to, Mia, our main character. She pointed out that speaking of the existential pressures of, I guess, navigating fertility as a person with cancer, living with cancer, especially an incurable disease where you don’t know your timeline. She said she’s trying to live her best life and she’s decided she doesn’t want to have kids, even though she does love being around them.
And yet this conversation about fertility, fertility preservation just kind of works its way into her everyday life, whether it’s a family member, a Thanksgiving, wanting to know about her, if she’s tested her genetics or it affects her dating life. She’s almost 27 years old now. And it’s a conversation that comes up when she’s getting to know people. And so, even though she’s already decided I’m not going to be retrieving my eggs, it’s still just a looming thing over her life. So, she said, this conversation, just the normalization of this conversation about people with cancer and family building is so important. So, this was a really, I think I was saying, just powerful story to report as always with patience.
But Mia especially was just such a wonderful character to be able to speak with. She’s just so vibrant and full of life. And having been through what she has been through, that’s just impressive to me. So, such a joy to speak with her. I’m so thankful that she was so vulnerable and willing to talk to us about this. So, I hope you enjoyed your reporting, too. It’s so fun to co-report stories like this where we come together with all of our findings and then we create this structure that just ends up flowing and working really well. So, thank you for your reporting. It was really awesome to do this with you. I hope we can do it again.
Sara Willa Ernst: Let’s do more. Let’s do more.
Claire Marie Porter: Let’s do more.
Sara Willa Ernst: More, more, more.
Claire Marie Porter: All right. Well, thanks so much for being on the podcast with me. And thank you, everyone, for listening. We’ll talk to you next time.
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.
