When insurance doesn’t cover egg freezing for cancer, with the Chick Mission

When our guests Amanda and Tracy were diagnosed with cancer in their early 30s, they were told their recommended treatments would lead to infertility. Then they learned that neither of their insurance plans would cover fertility preservation. This week on Baby Steps, hear their stories and how their nonprofit The Chick Mission advocates for fertility coverage and provides grants to cover fertility preservation.

Podcast Transcript

Show notes:

The Chick Mission

How to plan for the future with fertility preservation

[00:00:00] Amanda: So when I was diagnosed for the third time and was then told by my insurance company that I didn't qualify for fertility benefits, I kind of lost my mind. I was furious.

[00:00:18] Nancy: Getting a cancer diagnosis is one of the scariest experiences someone can face and even with a good prognosis cancer treatments, like chemotherapy have serious side effects like nausea, hair loss, and even lifelong damage to your fertility. Today, you might think of egg freezing, mostly as an option for people who are focusing on their careers and aren't ready to have kids yet.

[00:00:41] But egg freezing was actually first developed in the 1990s for people going through cancer treatments. What's unfortunate is that most insurance plans today do not cover fertility preservation for those going through cancer. Since 2017, a few states have passed laws mandating coverage, but most [00:01:00] states do not require it. Without insurance egg freezing typically costs $11,000 or more out of pocket.

[00:01:07] This is something my guests learned after their own cancer diagnoses. Their experience inspired them to found the Chick Mission, a nonprofit that advocates for fertility preservation coverage and provides grants to cover the costs of egg freezing. Let's hear from Amanda and Tracy.

[00:01:27] Hey, Tracy. Hey Amanda. Thanks for joining me.

[00:01:29] Amanda: Hi Nancy. Thanks

[00:01:30] for having

[00:01:30] Tracy: us. Hey Nancy, it's such a pleasure to be here today.

[00:01:34] Nancy: I would love to start by just hearing both of your personal stories about getting diagnosed with cancer and then trying to navigate the fertility side of everything. Amanda, let's start with you.

[00:01:46] So

[00:01:46] Amanda: I was a wall street working fabulous woman in New York city. And in 2014 was stopped dead in my tracks when I was first diagnosed with breast cancer. And [00:02:00] from there in 2015 was diagnosed with melanoma. And then in 2016 had a recurrence of breast cancer and treatment. All of

[00:02:09] 2017.

[00:02:10] Tracy: In a similar vein to Amanda was extremely healthy, but ended up being diagnosed with cervical and uterine cancer at 30 years old, which resulted in a hysterectomy and some other treatments leaving me infertile.

[00:02:27] Wow.

[00:02:28] Nancy: Wow. I'm sure these diagnoses were just so shocking, but when did you start to think about the fertility side in terms of how treatment might affect it?

[00:02:36] Amanda: Yeah, I mean, it was luckily brought to my attention very early on in the process. I was treated at a phenomenal hospital, very big, well known name in the research space.

[00:02:50] And they had a social working team that did bring this to my attention after diagnosis, before we decided on the final treatment plan.

[00:02:58] Tracy: My situation was [00:03:00] the exact opposite of that. You would think at 30 years old facing a hysterectomy, somebody might have mentioned along the way that I should consider preserving my fertility.

[00:03:09] It wasn't until I had been through three surgeries and a couple of biopsies and had my hysterectomy scheduled that someone said, hey, are you going to preserve your fertility? And I said, why I'm gonna try and keep my ovaries? And they said, no, it doesn't work like that. I was actually shocked that it didn't come up before.

[00:03:28] This was to be fair. In 2009, 2010, where egg freezing and embryo freezing was not as prevalent as it is today. But given the type of cancer I had, I was very surprised.

[00:03:41] Nancy: I know that egg freezing actually started for the purpose of preserving fertility related to cancer treatment. So that is wild that it didn't come up until you were so far in the process.

[00:03:52] Would one of you be able to talk a little bit about what it is about cancer treatment that people do recommend [00:04:00] fertility preservation, just for any listeners that aren't as familiar?

[00:04:03] Amanda: there's a variety of ways to treat cancer. It depends on the kind, it depends on the grade. It depends on your age and there are new breakthroughs.

[00:04:12] All the time. So I think it's really important to understand your treatment plan as somebody in their reproductive years, you are often diagnosed and then there's sort of a menu that is presented to you on treatment. So oftentimes it will include things like radiation chemotherapy, and sometimes long term drug therapy, which in the case of breast cancer, a lot of them, it is an estrogen suppression medication that you're on and they recommend you being on that for 10 years. So chemotherapy typically is given intravenously. And so as a woman, you are born with every single egg you'll ever have. And so the quality and quantity deteriorates over time. [00:05:00] When you have a medication like chemotherapy, many.

[00:05:05] Cocktails that are involved are a high risk for not only diminishing the supply of eggs, but also impacting the quality of the eggs. And then I mentioned drug therapy because say you're diagnosed at 35 and you haven't yet started your family and you, they want you to be on that medication, which you cannot get pregnant on for 10 years.

[00:05:28] That sort of limits you because by the time you're done with it, you're 45 years old. And the quality and quantity of your eggs are very low. Most likely your options are dwindling. Very quickly and

[00:05:42] Tracy: to tack onto what Amanda said. The thing that I think a lot of people forget about long term drug therapy is when you've just been diagnosed with cancer, you're worried about tomorrow. You're worried about next week, you're fearful of your own mortality. You can't really see 10 years in the future. And that's why a lot of people, I [00:06:00] think, punt this decision because many women are afraid. They won't see 10 years from now, but we know that biological clocks tick and it continues regardless of a cancer diagnosis.

[00:06:12] So you really have to look at your future while you're fighting for your life.

[00:06:16] Nancy: I know you both then tried to see what coverage was available and your insurance plan for fertility preservation. So can you take us through what

[00:06:24] Amanda: happened next.

[00:06:24] Yes, this is actually my, my most motivating conversation, I would say because it actually influenced the starting of the Chick Mission.

[00:06:35] And when I was diagnosed for the first time I had great insurance benefits, unfortunately did not have a fertility policy at the time. So I made the assumption that my fertility preservation wasn't covered because I did not have fertility benefits. Fast forward when I was diagnosed with a recurrence of breast cancer [00:07:00] and was going down this year long treatment plan that included chemotherapy, radiation, and long term drug therapy.

[00:07:08] I did have fertility benefits at the time. But when I called to let them know I was starting fertility preservation or, or wanted to, they told me I did not qualify because I was not infertile yet. I did not meet the standard definition of infertility, which was at that time in my age, trying for six months without success.

[00:07:29] And that blew my mind because I was 100% going be infertile after the fact. And yet they said it was elective and it was not covered. Which

[00:07:42] Tracy: is just shocking. When you think about that, she actually had a fertility policy in place. And in my case, they let me know that my fertility preservation would be elective, but I didn't elect to have a tumor.

[00:07:55] The removal of my uterus and cervix would absolutely [00:08:00] guarantee my inability to have a child, but yet the response came back time and time again, you're not infertile yet. This would be elective as if cancer's elective, as if a side effect of a surgery would be elective. It's shocking. And most people don't even know that this is a fact in terms of their policies.

[00:08:20] Nancy: What would the out of pocket cost be? Did they tell you what it would be when you started looking into.

[00:08:25] Amanda: Yeah. When I started looking, the quoted price was about $18,000. And so just thinking about you get diagnosed with cancer on a Monday, they wanna start your treatment right away, but they will give you those few weeks to do fertility preservation.

[00:08:42] And then you go to cash in on the benefits, cuz you've been a good soldier and paid in month after month and they tell you, you don't qualify and you need to come up with $18,000. Right now.

[00:08:52] Tracy: No go fund me no rainy day fund 10 days, $18,000. If you want even the [00:09:00] chance to create a family on the other side of your cancer experience, I would guess that most of your listeners don't have that kind of pocket change to come up with on a moment's notice.

[00:09:12] Especially when you are terrified that you won't be able to work during your treatment. You don't know if your insurance company will pay for your treatment. They certainly won't pay for your fertility procedures. So a lot of women are faced with the choice, forgo a future family, or potentially choose a lesser course of treatment to protect their fertility.

[00:09:33] So they'll be able to have children later at the risk of their own life..

[00:09:36] What were your

[00:09:37] Nancy: doctors saying during this time, were they sympathetic at all or were they just ready to move forward with the next steps in treatment?

[00:09:43] Amanda: You see a lot of specialists when you're diagnosed with cancer. And so the social working team did bring up the fertility preservation option, the oncologists and the surgeons are focused on their job. The oncologists are there to [00:10:00] aggressively treat any tumors that remain after surgery. The surgeon's job is to cut out any cancer cells that they can see. And so there is a little bit of disconnect amongst the team and they are trained to do their jobs and do it well, not to think of the entire person and their full life after cancer.

[00:10:21] Tracy: And the other side of it, as the years go on the survival rate for young adults is so high right now. It's about 90%. So after the oncologists and surgeons do their job and save your life, there has not been a lot of effort and energy to talk about what happens to the quality of your life on the other side.

[00:10:40] And in my case, I was never paired up with a social worker. It actually was my surgeon who brought it up. And my original OB GYN who diagnosed my cancer, sent me to a fertility clinic that she appreciated and liked their bedside manner in terms of [00:11:00] oncofertility. And they're the ones who helped me finance on the side through a grant called fertile hope, but from the Chick Mission's perspective, as more and more women live.

[00:11:11] More and more women look forward to many decades of a happy and healthy life. We wanna talk about the holistic person after the incredible physicians do their job.

[00:11:28] Nancy: I think this would be a good moment to talk a little bit about the Chick Mission and how you two connected and how you got all that started.

[00:11:34] Amanda: We luckily were introduced by a mutual friend pretty early on in the formation of the idea and the groundwork for the Chick Mission. So when I was diagnosed for the third time and was then told by my insurance company that I didn't qualify for fertility benefits, you know, I kind of lost my mind.

[00:11:54] I was furious. I was not gonna take the [00:12:00] word no at its face value. I decided at that moment, that nobody, if I could help it, would have to feel as low as really rejected as I felt at that moment. And so the idea of the Chick Mission came to me. The name came to me. I was on a very long hike and actually sprinted back because I wanted to see if the domain name was available.

[00:12:25] Actually was, I was shocked about that. Then I ordered nonprofits for dummies and as I was sitting there waiting, cuz you do a lot of waiting during cancer in the waiting room with my mother, we read it, cover to cover both of us. And I'm a finance gal. I don't know much about nonprofits except for raising money and donating.

[00:12:46] So we started to talk to friends and the people that were sitting there with me in the chemo suite and my doctor who helped me freeze my eggs. And then Tracy and I met through our [00:13:00] board president. And at that time she and I were total strangers, but within five minutes of meeting her, I knew she would make a welcomed addition to our team.

[00:13:12] Tracy: And when I was introduced to Amanda, I was about seven years from my cancer experience. I spent seven years being angry that the insurance companies wouldn't cover my fertility preservation. I wrote a book about it just to kind of move it through my brain and try and process in a humorous way, what it's like to have cancer and at 30 years old, and I remember sitting down across the table from Amanda. Waiting for the ask. These are business women. I expected they would want a check to help the organization get off its feet. And when I met Amanda, I was just completely in awe that there are so many people in this world who have wrongs done unto them, who are frustrated with the system who wanna make a change in the world.

[00:13:58] And what most people do is talk [00:14:00] about it. Incessantly in circles and what this woman did while she was still having radiation treatment was come up with an idea to fix things for those who came after her. And in that moment, I released all of that anger. And honestly, my inability to talk about my cancer experience until our first gala, I had never said out loud to a group that I was a cancer survivor.

[00:14:22] And from that day on, it became my, every day. Because we can't change the world in mass, but we can, from a technician standpoint, change someone's life in real time during the darkest moments of their lives.

[00:14:35] Nancy: How do you connect with people going through cancer?

[00:14:38] Tracy: Well, there are two ways that potential grant applicants find us.

[00:14:42] My favorite way is via Instagram. If you Google cancer, fertility preservation, I'm pretty sure we come up pretty high in the Google search as well as Instagram. So once we've identified a woman we potentially can help we let her know who our partner [00:15:00] practices are in her geographical area. If we do not have partner practices in her geographical area, we can recommend some additional sources.

[00:15:08] The other way that women find us are through social work teams at leading cancer hospitals, as well as our partner clinics, they identify someone who might fit our eligibility and has a financial need in order to preserve their fertility for some day and all applications come in directly from the clinic.

[00:15:28] And

[00:15:28] Nancy: do the women who come to you all have similar stories that they just don't have coverage for fertility preservation as part of their benefits at work?

[00:15:37] Amanda: Yes. I would say most of them, if they have insurance, they do not have coverage. There have been some strides made on the state level with 11 different states, but it only applies to certain size plans.

[00:15:53] There are a lot of loopholes and. If it's a patient that comes to [00:16:00] us, that is a Medicaid patient. They absolutely do not qualify because nothing has been done on the national level.

[00:16:07] Nancy: I know that something else you two do is talk with employers about fertility benefits like Carrot, but you know, not just Carrot.

[00:16:16] So can you tell me about some of that side of it, the work that you do?

[00:16:19] It's been

[00:16:20] Amanda: incredible. Our following. Is a bunch of people originally. It was a bunch of people from the finance community. So banks, hedge funds, brokers, private equity, you name it, spreading the word amongst our networks. I think you at Carrot can understand.

[00:16:38] These are a lot of the employers that are starting to dip their toe into specific fertility benefits. And I think if you just look at it from a talent perspective, a lot of tech companies cover these types of things, fertility and family planning, and these types of benefits are incredibly important to the next generation.

[00:16:59] The [00:17:00] finance community is competing with tech for the best talent. And so they are, have warmed up tremendously over the last five years since we started. And those that sit in our audience and donate to us and buy the tables at our gala. They are the ones who we're trying to influence. Hey, let's not only help change state laws, but let's help change employee benefits.

[00:17:22] Tracy: And Amanda is our dollars and cents numbers, gal, but it's pretty apparent when you compare what treatment is like from a fertility preservation or an egg freezing situation versus somebody either after cancer of, or of a, as I hate to say geriatric pregnancy age. It's so much more cost effective to cover this woman ahead of time, the amount of dollars and cents that go into the, this procedure after the fact is staggering.

[00:17:52] So it's actually a better business decision for both insurance companies and employers alike.

[00:17:58] Nancy: So when you're talking to [00:18:00] companies, what kinds of messages or stories do you feel like really land the most? What helps people say? You know, I get it now.

[00:18:07] Amanda: I think oftentimes I just say, look at me. I am almost five years out for my last cancer journey.

[00:18:14] I've been working on wall street, my entire career, and. This happened to me. If this could happen to me, very healthy, no cancer in the family, it could happen to anybody. It could happen to, depending upon the age of the person that I'm talking to, it could happen to your sister, your wife, your daughter, your granddaughter, and it doesn't cost that much money to add this as an amazing benefit.

[00:18:40] When you think of all the good that it does. And the dollars that it'll save down the line, what motivates people more than anything? It's it's babies. It's helping people that are diagnosed with cancer. It's everybody nowadays knows somebody who has had cancer. And I think [00:19:00] this stigma and, and the hush hush conversations over fertility challenges, it's dissipated giving people benefits helps increase that conversation and people feel less alone and less ashamed when you're struggling with cancer or infertility that often leads to mental health challenges. So let's provide these types of benefits now, so that we don't have to deal with so many things

[00:19:27] Tracy: after the fact. And people wanna make a difference if you are an employer and you care about your employees, which most do, especially in the community that we work with, you wanna help someone in real time, you wanna see the results and you can put endless money into kind of a, a nonprofit black hole, but both with the chick mission and with fertility benefits, you can change someone's life and you can watch it happen.

[00:19:55] It's not in theory. It's not something that isn't in. That's not tangible. You [00:20:00] can actually see someone go through the struggle. You're able to help through these benefits or in our case, patient grants and come through on the other side with the end goal, a happy and healthy family. Absolutely.

[00:20:14] Nancy: Do you find that employers are sometimes surprised by your stories?

[00:20:19] Cause I, I feel like I would actually assume even working at Carrot that cancer would be something where an insurance company would say, okay, yes, we'll cover fertility preservation in this specific case, but that's really not true a lot of the time. So do you find that the people you talk to, even if they are in HR and maybe chose the plan that they're, they're surprised to

[00:20:37] Amanda: hear that.

[00:20:38] I can confirm that a hundred percent because when I was diagnosed, the reason why we had fertility benefits and that my employer was aware of, even this option was because his wife had trouble conceiving. He felt it was his duty to add these benefits for his employees. You know, we worked as a family, it was a small firm [00:21:00] and he was irate when he found out that I didn't qualify after being diagnosed with cancer.

[00:21:08] Furious. And so I do bring that up to everybody that I speak with and they say, that's a great question to ask. I said, you gotta know all the fine print and make sure that's a great example of something you wanna bring up when you are speaking to your

[00:21:23] broker.

[00:21:24] Nancy: These plans are just so complicated and you just might think that when you're offering employees is enough, but then when it comes down to someone needing to use it, it actually isn't.

[00:21:33] Yeah, that's a great.

[00:21:35] Tracy: That's where the education piece comes in. Right? Like you don't know which questions to ask without knowing someone who's been through the experience or listening to baby steps, podcasts, you have to ask the questions to your broker, but you have to be educated of what you need to know and what you might not know.

[00:21:52] You

[00:21:53] Nancy: don't know what you don't know in, in all of these different situations. Absolutely. So I would love to hear how you two [00:22:00] are doing these days in your health and your lives.

[00:22:03] Tracy: I think that my background before I became the executive director of the Chick Mission was mostly in media, television, talent management, journalism, et cetera.

[00:22:14] And for me personally, the ability to take my story. My journey, my unfortunate expertise, as I like to think of it and turn it into something productive has been the best experience of my life. We recently met Amanda and I about 20 women in New York city who were Chick Mission grant recipients, or as we call them the Chick mission chicks and being able to have conversations, look at each other in the eye and understand that there's a shorthand because we have a shared experience.

[00:22:49] That's really changed everything for me, as well as my attitude about even being diagnosed with cancer in the first place I have put to bed, the idea that I will be a biological parent, that [00:23:00] ship has sailed for me, but in the end, the work and time and energy that I put into the Chick Mission into growing our organization, reaching more and more women, we approved patient grants, number 263 and 264 today.

[00:23:17] And that is everything.

[00:23:18] Amanda: And I would say if you had asked me back in 2014, what my life would look like right now in 2022, it would be vastly different than the current state of affairs for me, I am living in Austin, Texas, which was a COVID relocation after quitting my job and starting my own business. The chick mission has grown as Tracy mentioned from our first grant on Valentine's day of 2018 to 264 today.

[00:23:52] And I couldn't have dreamed of all of the impact. That we could have [00:24:00] made over the short period of time and how many people are involved in our mission from our incredible board to our volunteer core, to all of our donors. This is my passion project. I am not a biological mother, but I like to think of myself as a Chick Mission mother, we have four babies because of the work that we do.

[00:24:25] That is incredible and makes me wanna cry. Tears of joy. I am a very emotional person. I am so proud of everything that we have done and all the blood, sweat, and tears that have gone into this mission. There have been. A number of states that have changed their laws around this topic because of the personal stories that we individually have shared.

[00:24:49] And so many other survivors have shared over the last call it five years and we've got our eye on the prize. We want every state to change their law. We want a [00:25:00] national movement to happen around this. This is a side effect of cancer treatment. It does not need to be permanent infertility. And today I'm about six months out from my five year end to my final cancer experience.

[00:25:18] And I feel really good. I feel healthy. I feel happy. I feel just an immense amount of satisfaction out of what we've built. And where my current life is.

[00:25:31] Tracy: And it needs to be stated that all of this happened, the involvement in advocacy, the helping patients in real time, the four children, the over 40 volunteers are incredible donors and sponsors and supporters.

[00:25:50] All of this happened because one woman did not like how the system was treating a female issue and decided to do something about it. So anyone [00:26:00] who thinks that they can't be the change they wanna see in the world has not been paying attention to Amanda Rice in the Chick Mission. Don't cry. Oh,

[00:26:08] Nancy: that's great.

[00:26:09] And it sounds like this really like brought you two together as friends too, which is, that's just a nice side effect as well.

[00:26:15] Tracy: Nancy. If you ever have an opportunity to live with your business partner during a global pandemic, I highly suggest it. .

[00:26:23] Nancy: How is that? Is that what happened? Yeah, we, uh, we

[00:26:26] Tracy: spent 2020 plotting chick mission, world domination and working.

[00:26:31] On virtual fundraisers that could take place in front of our gala. We knew very well that so many women would not be going in for regular doctor's appointments. And there would be an influx of patients. On the other side of the pandemic, we knew that women who had coverage potentially for fertility procedures would be losing their jobs while the world was on fire.

[00:26:55] We kept our heads down and really tried to grow our mission to [00:27:00] prepare, to help other people.

[00:27:01] Nancy: That's amazing. You know, I, I was home like crocheting, so I think that, uh, you two accomplished more during lockdown. So yeah, I love to hear it. I was gonna

[00:27:11] Amanda: add, it's just exciting. It's an exciting part and exciting time for us because we are now starting to plan in person educational events again, which is our favorite thing to do.

[00:27:23] So anybody that is. Tuning in, definitely reach out to us. We have so many, we have 40 different partner practices and so many reproductive endocrinologists at our fingertips who love to talk everything fertility at any point. So we've got literally, I think, six being scheduled right now. So stay tuned.

[00:27:45] We're coming to a city near you.

[00:27:47] Nancy: Amazing. So joining me, I really appreciate it. And thanks for sharing your personal stories. Thank you,

[00:27:52] Tracy: Nancy. Thank you. So,

[00:27:57] Nancy: To [00:28:00] learn more about the Chick Mission and their work, visit the chick mission.org. You can find that link and more resources about fertility preservation in our show notes, and to learn more about Carrot Fertility, visit carrot, fertility.com. Baby Steps is produced and edited by Eric Montgomery and Christopher Olin. To get notified when new episodes are released, subscribe to Baby Steps on Apple, Spotify, or wherever you get your podcasts.

[00:28:31] Thanks for listening.

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