Host
Heather Simonsen, MA
Public Affairs Senior Manager
Huntsman Cancer Institute
Guest
Douglas Fair, MD
Director, Huntsman Cancer Institute's Adolescent and Young Adult (AYA) Program
Associate professor of pediatrics at the University of Utah
Guest
Dawn Ritzwoller, MPH
Patient Navigator, AYA Program at Huntsman Cancer Institute
Episode Transcript
Topics by Timestamp
- Welcome and introductions (00:51)
- Bridging the gap: Oncofertility and life after cancer (01:20)
- Navigating fertility decisions after cancer (04:27)
- Addressing oncofertility conversations with pediatric patients (07:07)
- Overcoming barriers to oncofertility and advocacy for change (11:39)
- Giving young survivors the chance to build a future (18:12)
- A personal journey and the role of patient advocates in oncofertility (22:10)
Welcome and introductions (00:51)
Heather Simonsen: Hello and welcome to Delivering a Cancer-Free Frontier. I'm your host, Heather Simonsen.
Today, we've invited Dr. Doug Fair to join us on the podcast. Dr. Fair is a pediatric oncologist, the director of the Huntsman Cancer Institute's Adolescent and Young Adult Program, and an associate professor of pediatrics at the University of Utah. Dr. Fair is one of the country's leading experts in oncofertility, oncology, and fertility. This is how he describes it.
Bridging the gap: Oncofertility and life after cancer (01:20)
Doug Fair: It’s a combination of clinical medicine and research to understand how cancer therapy, cancer diagnoses can affect fertility, and of course, working with fertility preservation, or giving patients the opportunity to build families after they are done with cancer therapy.
Heather Simonsen: You might not realize this, but he says oncofertility is even important for pediatric patients. I asked Dr. Fair what drew him to oncofertility.
Doug Fair: Really just a need. We're really excited that in pediatrics, adolescents, and young adults, which in the United States we define as up to the age of 39 being diagnosed, our survival rates are north of 80% and in a lot of diseases north of 85%. So, that's really exciting, and we've come a long way in the last few decades. So, it was sort of natural to start to think about, well, we have cured cancer for a lot of patients and a good percentage of them, but what do their lives look like afterwards? I had no idea what oncofertility was. I didn't have any training in it. In fact, there are very few programs that have any training in oncofertility, and we proudly have one here. But it was just seeing patients after they were done with therapy and thinking about future plans and realizing that there was a real gap in what we were doing when we were talking with patients that knew diagnosis and after they were done with therapy, about providing opportunities for them to build a family afterwards. So, I just sort of anecdotally saw that there was a need, and then that led me to dive into some research to say that wow, this is a huge need, not just locally, but nationally.
Heather Simonsen: So, what happens when you go through a cancer treatment? What happens to fertility?
Doug Fair: If we just think about the ovaries or the testicles as just another organ in the body, chemotherapy and radiation can have detrimental effects on any tissue. Whether you're talking about the heart, the bones, the intestines, the liver. And the ovaries and testicles are just no different. Now certain medicines can affect the ovaries and testicles different, just like some chemotherapies are more toxic to the, say, the heart than other tissues. But it’s just another organ of the body, so different medicines, different doses of radiation can affect those cells and those organs in different ways. And so, it's really important for patients to when they're asking their oncologist, if their oncologist hasn't brought it up, to say, you know, what is the risk of infertility? Because it is quite a spectrum from there's no risk for infertility, or in most cases, there's some. And it can be minor or small amount of risk, or there's a lot of consults we do where we say we think that cancer therapy is going to make you sterile. And so that risk assessment is really important, because it's a personal choice and different people feel differently about undergoing fertility preservation based on their risk for infertility.
Navigating fertility decisions after cancer (04:27)
Heather Simonsen: And let's talk about how oncofertility fits into survivorship. A young person diagnosed with cancer, you know, 18, 19, early 20s, they may not be thinking family planning, right? Let's talk about how, how you work with patients, on making those decisions.
Doug Fair: Yeah, it's a really good question, because, as you were kind of alluding to, it's a really tough age to be facing anything other than the challenges of being a young adult. But then you're diagnosed with cancer, which obviously comes out of left field for every young adult, most young adults are healthy, so you're diagnosed with cancer. And then when you're talking about fertility preservation, or oncofertility, the best time to talk about it is right when you're diagnosed. So, we sort of say we drop the bomb of a cancer diagnosis, and then we have to really pivot. And right at the beginning, even talk about things after cancer therapy, including family building, which, as you mentioned, you know, there's 20-year-olds who might not have thought through this, and certainly in the teens, have not thought about whether they even want to build a family. Or thought maybe I do but have not thought through any of the bigger questions. And so, to approach a new diagnosis, the young adult and have to ask them to, like, think about their future life that's 15 years away, 10 years away in an emotionally very hard time is one of the big challenges of oncofertility and those conversations.
Heather Simonsen: And how do they react when you bring it up and bring up the subject. Are they shocked?
Doug Fair: Yeah, I think this is the sort of surprising thing. Is that they, and the data would support this. What I have seen anecdotally is they are so appreciative about talking about it, while it's an awkward conversation to have to talk about ovaries and testicles and eggs and sperm and future family building, which is, again, something that they might not have thought about. It's amazing how quickly some of these young adults and even children can pivot and to think and talk about that. It doesn't mean that it's not hard and sometimes awkward, but they're so appreciative to have that conversation and to know that this is something that's really important to us, if it's important to them. And they're also, I think, really excited, even in the very beginning, to be thinking what life can be like after they're done with cancer therapy. So yeah, I think they're really appreciative to have the conversation. But that doesn't mean it's not hard and tricky to navigate.
Addressing oncofertility conversations with pediatric patients (07:07)
Heather Simonsen: So, it gives them that hope piece and thinking of the future. What is the best way to approach the subject? Like, how do you talk to your patients about it?
Doug Fair: Being straightforward, to be honest and to not like sort of beat around the bush. You have to use these words, like ovary and testicle, which, again, some teenagers, young adults, especially in a medical context, is the first time they heard those words said aloud. And so, I think just being straightforward, and I think that they can genuinely appreciate that their cancer team thought enough to talk about this, or call to consult, to have us, have a team come and meet with them to talk about this. So I think just kind of laying the cards on the table and they're very receptive to a very hard conversation. And I think it's important to maybe emphasize that, because I think there's a lot of reasons why, still, fertility preservation in cancer patients is underutilized, and under discussed. And one of the reasons is that oncologists sometimes feel uncomfortable bringing that up, because they think, well, they're late teen, they’re early 20s, they don't, you know, this isn't on the forefront of their mind, and it might just be difficult. I don't want to burden them with another hard thing, and have just been diagnosed with cancer, but the truth is, they are really appreciative of having that conversation.
Heather Simonsen: Is this something you talk to pediatric patients and their parents about as well?
Doug Fair: Yeah, absolutely so, at Primary Children's Hospital, where we treat children and young adults, and it's the same sort of message when we talk with young adults. And obviously parents are involved with their kids and making decisions for their kids, but parents are super happy to have that conversation. And even our young teens that, again, they squirm a lot when we have to talk about this topic. I think they're all just very glad that they did. And again, it's a tricky conversation, because not only is it a conversation about future family building and what medical procedures we need to consider. But unfortunately, where we are in 2024 financial implications are still a real important part of the consideration for fertility preservation.
Heather Simonsen: Yeah, because it's expensive.
Doug Fair: It is and there's just really a discrepancy here in equity between females and males. In the sense that for females, based on their anatomy and physiology, doing fertility preservation is just more involved and more costly for females. If we're talking about an egg, egg freezing, or we call it, cryopreservation. We're talking about two weeks of hormone injections, really over stimulating their ovaries, so then we can procure, or we can obtain eggs. And it's not a fun experience, and it takes about three weeks to have that all done, whereas for males, we're talking about sperm banking, which is just a lot more straightforward. It's a lot cheaper and a lot easier to access. So, there's really some inequities between the sexes there.
Heather Simonsen: And what's the success rate of oncofertility?
Doug Fair: Yeah, it depends. For prepubescence, or people, boys or girls who have not gone through puberty, we have fertility preservation. That's where we for females, we can either cryopreserve their ovary or for boys, we can do a testicular tissue cryopreservation, take a small piece of their testicle and cryopreserve that. Those are a lot less successful than the opportunities for post pubescent or late teens, 20s and 30s, for males and females. The rates of success for fertility preservation, then using that tissue shouldn't really be any different for a cancer patient than somebody who does not have cancer. I think the trick is to have that conversation, to do those procedures before they start therapy. After you've undergone therapy, it really depends on what medicines, what chemotherapy, and what radiation. There can be a big drop in both their reproductive window or the years that they have to try to get pregnant, and also just the eggs and the sperm take sort of a hit, so to speak. And so, fertility preservation is definitely an option for some patients after therapy, but it's better to do it beforehand. And it really is the same rate of success as anyone else who doesn't have cancer and is going through those same sorts of fertility preservation reasons.
Overcoming barriers to oncofertility and advocacy for change (11:39)
Heather Simonsen: So, we've talked about how it's an uncomfortable conversation, and some doctors don't even want to approach it right? What other things need to be tackled for this to really be an option for patients?
Doug Fair: Yeah, it's a really good question. And like a lot of big problems, they become big problems because there's actually, like many pieces to tease out and to try to solve. I wrote a piece for a periodical called Elephants and Tea, which is this awesome adolescent young adult magazine. And they were doing a feature on oncofertility, and they had some great stories from cancer survivors of young adult and their experience, or lack of experience with fertility preservation, or that conversation. But I gave sort of my piece from a clinician, and I enumerated the challenges of providing fertility preservation, or why, even in the most generous data to date, would say only about 50% of young adults have a quality oncofertility consult.
And the reasons, one is there's this uncomfortableness, I think, from physicians, you would think that we should be very comfortable talking about ovaries and testicles and families and all that. But the truth is, we're humans, and that's still sometimes a challenging and awkward conversation. I think another piece to that is that the data would say that there's somewhat of a bias that people think, oh, their prognosis is a little bit less, so they probably don't want to talk about fertility. Or and there's a lack of knowledge as to how do I make a fertility preservation consult happen? And so they don't understand the logistics of the financial or, again, a big bias on that is, I don't think this patient might, you know, have a lot of means and financial needs, and I've heard that it's expensive, particularly for women, so I don't want to burden them with something that they can't afford or I can't get covered for them. And I would just say to those oncologists, and which I, you know, used to be one, is just that the data would be so clear that patients want to have this conversation. And even if there are barriers with finances or challenges, they want to have this conversation and to be able to be thought of as a survivor right from the get-go.
And I'll say that, you know, the American Society for Clinical Oncology, which is the group that sort of makes a lot of guidelines for oncologists they have, for now, over 20 years, had a very clear statement that every young adult who is diagnosed with cancer deserves, and it's required that they have be given the information about their risk for infertility and to be put in touch with fertility specialists.
Heather Simonsen: I mean, you've really become a champion of this issue. Tell us a little bit about that. I mean, why is it so important to you? And do you feel kind of the weight of it as well the burden of it?
Doug Fair: I'll answer the latter part first, and to say that it does feel like a burden. I think until every patient who's diagnosed with cancer, we can walk in and tell them about their risk for infertility, provide them with options, and then also be able to say all this is covered. I usually when I do the consult, usually go through all of the medical, the medical piece, their risk, their fertility preservation options. And then I usually say, and this is my least favorite part of the conversation, when we have to talk about the finances. We've tried to pull every lever, from philanthropy to again, getting coverage, to using national grants. And we do a pretty good job of piecemealing to make it a lot more affordable, but until we are at a place where everyone's getting a consult and everyone doesn't have to pay for their fertility preservation, we have strides to go.
Heather Simonsen: And you've advocated for it at the state level. What strides are you making and is there something about Utah that makes that easier to do?
Doug Fair: I would think so. And that's certainly some of the, some of the pitch that I've made when I've testified on the hill, when we've been trying to propose bills. And I've helped author, co-author, two bills that have, very fortunate, they've become laws, where we talk about Utah as a very family friendly state. I would just say, though, that the pitch is fairly easy to make in my mind, I’m obviously very biased here. And the pitch we generally make is fertility preservation is so important to young adults.
For those who want it, it is particularly for women, prohibitively expensive. They just cannot afford to write a check for $12,000, $14,000 and that's a lot of money for an individual, particularly a young adult, who might not be financially independent. But from a system, fortunately, pediatric and young adult cancer is still rare, so the hit to an insurance provider, the hit to the system, it's very cheap because, luckily, they just won't have a lot of they won't have a lot of young adults in their system that get cancer and that they have to consider it. So, it's pretty cheap on the system level, but super prohibitive for an individual. So, we sort of went piecemeal.
So, we started with the University of Utah, and again, on Utah, and again, I was super proud that they came through and in 2021 start providing coverage. And then we went to look at the other, the other big groups. And so, one of those is Medicaid. So, Medicaid patients, the state gets to choose what is in their Utah Medicaid package. And so, one of the laws is called HB 192 we passed that about four years ago. That states that if you have Utah Medicaid, you and you're diagnosed with cancer, you have fertility preservation coverage, and that was huge. But I learned very early on that this is not at all isolated to Utah. It's a national issue. And in fact, now we are in the place where other programs are emulating our oncofertility programs, and I've consulted with them about how to build a program. Also, our legislation has been a model for others, and so I've helped with other states that are trying to pass similar, similar laws, and that's been a really fun piece.
Giving young survivors the chance to build a future (18:12)
Heather Simonsen: Well, and it's so important, especially right now, it's been big news that more younger people are getting cancer. And of course, you know, the big question is why, and we don't know why. But can you tell us why it's so important, given that, that we really talk about oncofertility and it's not this taboo subject anymore?
Doug Fair: Yeah, I think to reaffirm what you said, we don't really know why the rates of young adults and cancer are increasing. We have some different hypotheses, from diet and lifestyle, from exposures to other things in the environment, but the truth is, we have not sussed that out, and we're not totally sure. But this ability to think beyond your cancer diagnosis is something that every patient, every family, really wants to have. And again, the success rates. I mean, until we're 100% cure rates for all cancers, we have a lot of work to do. But again, most cancers, greater than four out of five of young adults who are diagnosed with cancer, will become long term survivors. So, we it is on us as an oncology field and community to be focusing on these longer-term issues, because odds are, they are going to be survivors, and they are going to be thinking about these issues and want these things as opportunities to, in this case, build a family.
Heather Simonsen: Yeah, I love that so much, because it's you survive, that's the main thing. But also, you want the rest of their lives to be rich. It's caring for the patient long term and not just the medicine, but their hopes and dreams for the future, right?
Doug Fair: Yeah, giving them every opportunity to live the. Life that they imagined, and there's no getting around that a cancer diagnosis will change their lives in lots of substantial ways. Patients will often describe when they finish therapy as falling off a cliff. And I think people understandably, but it's just inaccurate assume that like once you're done with cancer therapy, things are awesome. You're done with cancer therapy; aren’t things are all rainbows and unicorns. And the truth is, there's a lot of burdens that they might be facing and challenges, especially being a young adult. Getting back into work, getting back into school, integrating back into society, and to be able to bridge that is a really important thing. And it's just been really amazing to kind of see how patients have really appreciated that mindset and those services to help them when they when they finish therapy.
Heather Simonsen: So, have you heard from many patients who went through oncofertility and later had a baby?
Doug Fair: Yes. I've had that immense privilege, and it was just really exciting to see patients, and have had numerous now that would not have been able to build their family without fertility preservation. And so that's been incredibly rewarding and really magical. Yeah, it's just like a really, a really special thing to know that without this program, to know, without some of this coverage, they wouldn't be able to do this. They wouldn't be able to preserve their fertility and keep their hopes and dreams of building a family later on alive.
Heather Simonsen: Well. Thank you so much for being with us today and sharing your insights. I learned so much.
Doug Fair: Oh, thank you. It's a pleasure to be here.
A personal journey and the role of patient advocates in oncofertility (22:10)
Heather Simonsen: Young patients often need help going through cancer treatment and in deciding if they want to pursue fertility preservation. That's why patient navigators are becoming more and more popular across the country, a navigator guides their patients through the healthcare system, helping them set up appointments, figure out finances, work with insurance companies, you name it. They are there to advocate for their patient’s needs. Dawn Ritzwoller, MPH, is an adolescent and young adult patient navigator here at Huntsman Cancer Institute, she decided to become a patient navigator after going through her own cancer journey.
Dawn Ritzwoller: I think that thinking about my fertility truly gives me the most anxiety out of any topic ever, and it's the reason why I want to help with oncofertility preservation. My name is Dawn Ritzwoller, and I am an adolescent and young adult cancer patient navigator with Huntsman Cancer Institute. I decided to become a patient navigator because I was diagnosed with cancer when I was 13 years old, and I had what's called ovarian germ cell cancer, I ended up having to go through multiple cycles of chemotherapy treatment. I was in and out of the hospital for over a year of my life, and doctors removed the entirety of the right side of my reproductive system through surgery, nobody said to me, this may impact your fertility at some point. I would have loved to have fertility preservation conversations, because I really want kids. And I've known my whole life that I've really wanted kids, and even if it wasn't presented to me as an option, I wish it would have been discussed with my parents, because my parents would have advocated that we explore options prior to treatment.
It wasn't until I met with an oncologist later in life, probably when I was 19 or 20 years old, and this is when I switched to adult care that my oncologist said, “Hey, you might be at risk of premature ovarian failure.” “This is definitely something you need to look out for.” Premature ovarian failure is when a female is no longer able to get pregnant because her ovaries are not producing eggs anymore. So, I was at risk and am at risk of going into premature ovarian failure even a few years from now, could even happen now, really, that is because of the chemotherapy. It's also because I only have one ovary, but that's not really causes menopause, per se. It's because of the toxic regimen that I received. And that was only after I asked about my fertility, because my mom, she is in cancer research. And so, she's heard down the grapevine that this could be an issue with germ cell, and she urged me to have these conversations. So, it was not discussed with a provider until I asked about it, probably nearly 10 years after I went through cancer treatment, I wanted to make sure that I was able to have kids when that time came, and that's when I was finally connected with oncofertility preservation services.
So, when I started the fertility preservation process, I thought it was just going to be easy, that I could just immediately get access to care, and I was living in the state of Colorado at the time, which had a bill passed in 2021 to have insurance cover fertility preservation services when you're at risk of infertility. So that should cover and leaves it open ended to cover both pretreatment cancer patients and post treatment cancer survivors within the bill. My insurance decided to try to work around the bill and say we're only going to cover people that are pretreatment. And that was extremely scary, because I am 25 years old and do not have the financial capability to pay for fertility preservation without financial assistance. By myself, I wrote an appeal to my insurance asking for it to cover me based on evidence of the chemotherapy that I received, showing that it puts me at risk of infertility, and yet they still denied me. So, I had to write three appeals, and I was able to get in touch with the House of Representatives in the state of Colorado and the insurance commissioner. And after making a final phone call to insurance utilization, I was crying on the phone, saying how important this was to me, that I would obtain coverage for this necessary service. I finally obtained coverage as a cancer survivor.
So, I think when I went through at least a part of the process with fertility preservation, a navigator would have been so helpful, and it would have been so helpful during survivorship and during treatment, just someone to be a listening ear, or someone I could connect with. And that completely transformed my career and my career goals. I wanted to be with the patients, speaking with the patients and survivors, being there for them. I was going to be a researcher. I had a job lined up to be a project manager for an ovarian cancer researcher, and then I completely pivoted my entire career and decided to go be a patient navigator. It's not to hype myself up. I just think this is so beautiful, and it made me cry. A patient calls me her angel. She says, “hello, my angel.” And it makes me want to cry, because it really demonstrates that the work that I'm doing is not nothing to these patients, and yes, they can have a choice to say no to me helping. More often than not, patients want my help, and I want to help patients so it's been a beautiful career choice for me I would say.
I wish I could scream it at the top of my lungs that fertility preservation is amazing because it brings back a sense of control. Cancer, to me, the biggest thing that it brought me was a loss of choice. Was a loss of control. I lost my hair; I lost the majority of my body weight. I lost my ovary. I lost choices. I lost my autonomy, and fertility preservation, although it's hard and it's a hard decision to make, it brings back a choice, a choice that I get to potentially be a parent if my body does not allow me to be.
If any cancer patients or survivors are listening, I just want to say, I see you and I hear you and I'm here for you. And it can feel so frustrating at times, especially being in survivorship. But Huntsman has so many resources that patients and survivors can take advantage of, and I really hope that navigation can help connect them.
Heather Simonsen: Thank you so much to Dr Doug Fair and Dawn Ritzwoller for joining us today. We're so grateful they could tell us about how Huntsman Cancer Institute is working to offer oncofertility to all patients, both here in Utah and elsewhere. To our dedicated listeners, we're thankful for your support. For additional resources, be sure to check out our show notes. If you want to stay connected with us and be the first to know about upcoming episodes subscribe on your favorite podcast platform. Please log on to the Apple podcast and leave us a five-star review. This helps other people like you, find our podcast. If you have questions, comments, suggestions for future episodes or a personal story you'd like to share, please visit our website huntsmancancer.org. The music composed by Mix At Six studios, additional music from Blue Dot sessions.