Fertility Preservation Options for Cancer Patients with guest Amanda Rice and Tracy Weiss of The Chick Mission
In this article, I’m talking to Amanda Rice and Tracy Weiss of The Chick Mission. They are an organization focused on fertility preservation options for cancer patients.
Amanda Rice is the founder of The Chick Mission. She’s also a three-time cancer survivor. The Chick Mission was hatched (no pun intended, but that’s really cute) when Amanda’s fertility preservation coverage was denied by her insurance company. After chemo, radiation, and long-term drug therapy, she started fertility treatment, opting to cover the cost on her own. She focuses on helping other patients find ways to cover the cost of fertility preservation, as socioeconomic standing should not be a factor in anyone wanting to pursue having biological children after they battle and beat cancer.
Tracy Weiss is a cancer survivor, diagnosed with cervical cancer at age 30. Her insurance company denied her claim to preserve her fertility, describing it as an elective procedure.
Tracy partnered with Amanda, to help other women facing the same challenges.
Dr. Aimee: Welcome! You both beat cancer and decided to create The Chick Mission. Tracy, would you tell us more about you and what led you to The Chick Mission?
Tracy Weiss: When I was told that I had cancer at the end of 2009, I couldn’t believe it. I was in a very weird situation where I was having some physical symptoms. I believe that doctors are experts, so I asked my OBGYN, I had clean annual PAPs for 15 years; what was happening with all of these physical symptoms? They kind of blew me off and told me that I was being a drama queen. I actually had a female OBGYN use the word hysterical, which makes me laugh now knowing what hysterical means in the long history of women’s reproductive health.
When I found out that I was sick, someone told me that I had the Rolls-Royce of cancer, I wasn’t going to lose my hair, the radiation would not be that intense, it would be “just” a surgery. What I found is two and a half months into exploratory biopsies, no one had ever mentioned the word fertility preservation, at age 30.
I’m 10 years out from my experience and the world of fertility and reproductive medicine has really changed, even in the oncology space. At that time, I was such a neophyte I didn’t even realize that if I was to have a radical hysterectomy that I wouldn’t be able to freeze my eggs. All of my friends were just starting to have children. How would you know if you didn’t know?
Suddenly, I met this woman named Amanda Rice who had the same experience when her insurance told her no, not once but twice, that she didn’t fit the definition of infertile. It was suddenly like a light bulb had gone off over my head. I had all this experience in media, in events, in marketing, and frankly, just being a storyteller who is not afraid of having hard conversations. Using all of these skills gave me fuel for my ever-present fire. I suddenly had a lens in which to focus it, and The Chick Mission was born.
Dr. Aimee: Amanda, would you share a bit more about yourself?
Amanda Rice: I was diagnosed three times with cancer before the age of 40. No family history, strange symptoms, but luckily found it at a very early stage. The very unique thing about being diagnosed as a young adult, given all the advancements in science and technology and breakthroughs in treatment, is that most of us go on to live a very happy healthy life. That is incredible.
When you’re diagnosed with cancer, one of the things that you really have to think about when you’re of childbearing age is the impact of life saving treatment on your ability to become a biological mother one day. When I was diagnosed, I was not a mother, I was 37 years old. I did have insurance.
One of the doctors that I was working with mentioned, “Have you thought about fertility preservation? You’re about to go through the wringer.” Whether it’s surgery, long-term drug therapy, radiation, or chemotherapy, or surgery to remove some of your organs that are crucial to actually having a baby, all of these things will lead to challenges when you’re trying to pursue motherhood after cancer.
Unfortunately, the first time I was denied by my insurance company. They told me that fertility was elective and that I did not qualify for benefits at that point. Fast forward a couple of years, I got diagnosed with breast cancer for the second time, and I did have a fertility policy in place, which I didn’t have the first time.
So, I went to my insurance company and said this time around I’m not only going to have to do surgery, but I have to pursue fertility preservation ahead of chemotherapy and radiation. They said, “Sorry, you don’t qualify because our definition of infertility is you’ve been trying for six months without success at your age.” I said, “No. You’re not listening. I just told you that I have to start chemo in two weeks.” They said, “Sorry. Those are the rules.”
That to me was heartbreaking. It was a moment where I had been through the wringer, I knew the lingo now. Cancer is very overwhelming, but this was the third time around. I skipped a little bit of melanoma in between. You know who your doctors are, you know you’re going to be okay, but then the insurance company rejects you. You’ve already been rejected by your body numerous times. I just bawled and got so angry and felt just very hopeless. So, I kind of vowed at that moment that I was going to try to fix the problem however I could.
Dr. Aimee: What brings The Chick Mission to Texas in May of 2021?
Amanda Rice: We’re here for the advocacy work that is done on behalf of cancer patients everywhere. It’s state by state. We are in the great state of Texas right now and having a great old time. Also, here because an incredible bill was introduced by Nicole Collier at Fort Worth who is a cancer survivor, and this bill would mandate that insurance companies start covering fertility preservation for cancer patients.
We have this incredible tool on our website that you can literally go on there, if you’re a Texan, put in your address, and it will generate a direct letter of support to your state representative, it will go straight to their inbox. It takes less than 60 seconds and we would love your support.
Tracy Weiss: This year in the Texas legislature there is a bill introduced to the house, HB293, that says insurance companies should pick up this fee to preserve fertility for cancer patients. The session runs until the end of May. The Chick Mission has partners in Houston, in Austin, in Fort Worth, and in Dallas. We’re here in the capital of the Lone Star State to try to keep the buzz going and hopefully help push the bill through, and we’re just presenting our stories as Texas constituents now. We’re here, this is our experience, and we speak for cancer patients everywhere who can’t come up with $15,000 to $20,000 out of pocket to freeze their eggs with two days’ notice.
Dr. Aimee: You’re certainly doing that. On your website, you talk about this catch-22, and I think that’s exactly what you’re referring to. For people out there who are dealing with the same thing, what can they do within the system if they’re facing the same type of catch-22?
Amanda Rice: When I was diagnosed for the first time, it was 2014. No state laws had changed as it relates to fertility preservation and insurance companies covering this for cancer patients and other illnesses. Since then, there have been a phenomenal number of survivors and other incredible people in the infertility space that have banded together and really made a lasting impact.
With the advancements in fertility preservation — egg freezing, sperm freezing — it’s a no-brainer. It’s just a broken system that needs to be educated. It’s voices, it’s people that have gone through this that are the ones to get through to their legislators. There have been 10 states now that have changed their laws as it relates to fertility preservation for illness.
Dr. Aimee: Amanda shared some of her frustration and talked about the catch-22 with her insurance. Did you experience the same sort of catch-22 that she experienced?
Tracy Weiss: I think because I was so young and I was so uninformed about all of these things, when the insurance company told me that it was elective to cover fertility preservation, I just said, “Did I elect to have a tumor? If I had a broken bone, would I elect to have an x-ray? I just don’t understand.”
They said, “We’re sorry, ma’am.”
I hung up the phone and I cried, and I put it on my credit card. I was lucky enough to be able to do that. I did receive guidance and support financially from an organization similar to ours. But I didn’t fight the way that Amanda did. And, that’s something that I always regret.
I appealed, I sent letters, I called once in a while, I kind of let it eat at me, which is why I don’t want any other woman who is sitting in that waiting room whose insurance says, “Sorry, try again,” I don’t want them to live with it for years the way I did.
Dr. Aimee: That’s incredible. For oncology patients who are considering fertility preservation prior to receiving treatment for cancer, what are the kinds of things they should know?
Amanda Rice: There’s a lot of resources out there. The first thing I always say, I’m the go-to cancer girl for all of my friends and friends of friends, anybody who reaches out to The Chick Mission’s website, I’m the one who gets that email. I’m here for you. Reach out. We’re a small organization. We know a lot of people now, and we’re connected to some phenomenal organizations that do what we do and we all try to collaborate.
I think the first step is education. You need to learn about your options. We’ve come across some incredible reproductive endocrinologists, oncologists, social workers, and nurses who help patients make quick decisions by explaining all of a cancer patient’s fertility options. The sad truth is that national stats are still pretty bad, with less than half of doctors informing patients about their options, and we feel that’s just not fair.
Our second mission is to raise money to provide need-based grants. We’re a lean organization, and we have about 25 fertility partners across six states that we work with. If somebody reaches out to us on our website, we help match them with local resources and work to confirm that match within 24 to 48 hours. We know that a cancer patient does not have time to wait, they have to rush into treatment, so we need to provide an answer and provide a solution.
We only work in six states, so there are 44 states where we don’t have the money yet to expand. That said, there are other groups out there, and there are other resources. We ask for their zip code because we want to know where they are before I reach out and say, “I’m sorry, I’m only a small organization trying to do our very best to pay it forward, but here are some other ideas.” That’s the second leg of the stool.
The third mission is advocating for patients on legislature at the state level. As I mentioned, 10 states have changed their laws. We’re not going to stop until all 50 states change this law and catch up to the modern medicine that we have access to today.
Dr. Aimee: You mentioned how we’re still not doing enough to talk to patients about fertility preservation options. If an oncologist is listening to this right now and they are about to tell a young woman that she has cancer, what kind of recommendations would you have for that oncologist?
Amanda Rice: Let them know their full diagnosis, and tell the patient about their options. It’s our hope that oncologists are also aware of the potential impact on a patient’s fertility and that they advise on that, too. When someone understands what they are facing, then they can make informed decisions about the next steps for their care, and look for funding if needed.
Dr. Aimee: One part of your mission is also to provide scholarships and monetary assistance to women who perhaps would not be able to otherwise afford fertility preservation services. Can you talk a little bit about that and your Hope Scholarships?
Amanda Rice: We named them Hope Scholarships, and we created them to pay for eggs. Hope was incredibly important. We know how hopeless you can feel when you’re getting both the news of cancer and the impact on your future ability to start a family. We want to provide hope and light.
The patient would come to us through their reproductive endocrinologist. We take a look at one page of information. We cover females from ages 18 to 40, with any type of cancer. The scholarship is need-based. We say if your adjusted gross income is $150,000 or less, you can apply as a single woman. If you’re partnered, it’s $200,000 or less. We cover about 10% of the cost, the average is $15,000 to $20,000.
There are amazing doctors out there who will honor discounted fees for cancer patients. You just have to ask that question. We’ll tell you within 24 to 48 hours if we can accept someone for a Hope Scholarship, and let them know the total amount they’ve been awarded, just so it’s all out in the open. We don’t cover medications, but there are some programs that do.
And, there are other pockets of resources available. There is no single centralized website for them, so patients may need to do a little digging. Some places to check are our site: The Chick Mission, or some others are Livestrong Foundation, The Samfund or Fertility Within Reach.
Another thing to consider is that there are grants that patients can apply for, or patients may have family members they may be able to lean on. A patient may be able to do a quick GoFundMe, or set up payment plans. In addition, there are discounted programs, and there are free medications for cancer patients.
Dr. Aimee: What are some fundraisers that you have going on to reach your goals for The Chick Mission?
Amanda Rice: COVID has been tough, because we’d relied on a lot of in-person events. Historically, we have our big Fall gala in New York with 500 people, but 2020 was not the time for that.
Last year, we came up with this great idea called The Great Egg Freeze. It’s The Chick Mission’s version of a Polar Bear Plunge. It was a family friendly, COVID-friendly type of thing to do. We would ship you a box of our SWAG, a towel, goggles, a swim cap, sunglasses, and basically ask you to film yourself jumping into water. You could set up a peer to peer fundraiser and your goal. We had people with goals of $250 to $10,000. We ended up raising enough money to sustain our program.
We’ll be having a Great Egg Freeze from now until we change all of the laws and decide what our next cause will be. It’s a really fun event and we’re going to be doing them all across Texas, we will do one in Denver, we’ll do one in Southern California that we’ll invite you to, and one in Northern California.
Dr. Aimee: What is your next move after Texas? Is there another state in your future that you’re going to target to hopefully make these changes there?
Tracy Weiss: We have some ideas. Nothing specific. Obviously, the dream is a federal law that would allow cancer patients to help themselves, to not end up further in debt for following their dreams.
We’re finding more and more women are being diagnosed in their early 20s. These women are right out of college, with college debt, and then suddenly they’re going to go into even more debt with their treatment and fertility preservation. The result is a situation where women become very heavily in debt.
Dr. Aimee: If people want to learn more about any of the things that you mentioned today and want to get involved in The Chick Mission, or if you’re a fertility doctor like me who wants to get onboarded to help you guys, how can they do that?
Amanda Rice: You can contact us on our website. We have a newsletter that you can sign up for. If you’re a patient, you can send four pieces of information about who you are, and we’ll try our best to lead you in the right direction. If you’re a provider, send us an email, we would love to be able to expand our partnerships.
Dr. Aimee: Thank you, Amanda and Tracey, for your time today. Thank you for all you’re doing for cancer survivors, patients everywhere. I look forward to learning from you guys about your advocacy work and I look forward to all of the amazing things that you’re going to do in the years to come. Thank you.
Amanda Rice: Thank you, Aimee.
Tracy Weiss: Thank you for having us!
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