Season 2 Episode 5: From Patient to Advocate

In this episode of the GOSH Podcast, we are joined by Tracy Weiss, the Executive Director and Chief Creative Officer of the Chick Mission.  She is a cancer survivor who was diagnosed with cervical cancer at age 30. Having her insurance company denied her claim to preserve her fertility under it being ‘elective’, she realized that she has to get revenge by making sure no other woman would have to go through the same thing. Throughout this first episode with Tracy, you'll get a chance to hear her entire story from diagnosis to her work with the Chick Mission.

Chick Mission is a national community of patients, survivors, parents, doctors, advocates, friends and loved ones who are all working together to preserve hope and choice for women battling cancer in the US. Their mission is to ensure every young woman newly diagnosed with cancer has the option to preserve their fertility through direct financial support, educational programs and advocacy for legislative change. To learn more about them, check out their website www.thechickmission.org.

Resources mentioned:
Fertile Future: https://fertilefuture.ca/

For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca

Where to learn more about us:
Twitter - https://bit.ly/3jsViHM
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Facebook - https://bit.ly/3knUgOw

For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca

Where to learn more about us:
Twitter – @GCI_Cluster
Instagram – @gynecancerinitiative
Facebook – facebook.com/gynecancerinitiative

Transcript

Introduction 

Thanks for listening to the GOSH podcast. Gosh stands for the gynecological oncology Sharing Hub, an open space for real and evidence-based discussions on gynecological cancers. We'll share the stories of guiding cancer patients and survivors, and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecological cancers. Our podcast is produced and recorded on the traditional unceded territories of the Musquem, Squamish, and Tsleil-Waututh Nations. 

It is produced by the Gynecological Cancer Initiative, a province wide initiative in British Columbia, with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment and survivorship of gynecological cancers. 

Hi, I'm Nicole Keay and I'm Stephanie Lam, and you're listening to the GOSH podcast. 

Nicole 

Well, welcome back to the Gosh podcast. My name is Nicole, I am your co-host and I am flying solo today. Stephanie is taking this one off as she thought this topic would be nice for me to cover off on my own it's very near and dear to my heart and something that hits really, really close to home. 

So I'm I'm really excited to have Tracy Weiss join us today. She is with a group called Chick Mission and Chick Mission is based in the US. It's a national community of patients, survivors, parents, doctors, advocates, friends and loved ones who are all working together to preserve hope and choice for women battling cancer. 

Their mission is to ensure every young woman newly diagnosed with cancer has the option to preserve their fertility through direct financial support, educational programs and advocacy for legislative change. So refusing to let the emotional, physical and financial cost of a cancer diagnosis stand between young women and a full life after beating cancer, they've helped more than 125 women preserve their fertility in advance of their life saving cancer treatments, saving patients and their families, 1.6 million in medical expenses. And they won't stop advocating, educating and fund raising until this coverage is the norm in all 50 States. 

And Tracy was diagnosed with cervical cancer at the age of 30, her insurance company denied her claim to preserve her fertility treatment under it being “elective”, wanna you hear more about that, yeah in quotations, and rightly so, she was angry and now gets her revenge through Chick mission. She is their executive director and chief creative officer and I am really excited to welcome you to the podcast Tracy and chat with you today. 

Tracy 

Thank you so much for having me Nicole, I feel like listening to you speak about our mission come through like fresh eyes, I want to get involved in this? 

 Nicole 

I want to get involved. 

Yeah, I I just you know I I dove into your website. Obviously it was newer to me. 

We have a a similar organization here in Canada but I love what I'm reading so far. It sounds like a really great organization. You're doing some really amazing amazing work. 

So really excited to dive more into that, but first obviously you're a cancer survivor as well, clearly really passionate about this issue, so I'm hoping you can fill us in and tell us a little bit more about yourself and your journey with cancer. 

Tracy 

No, thank you for asking. Myself is my favorite topic. 

You know when you start the story for anyone who hasn't been diagnosed with cancer, I know that you're a survivor as well so you know, we all have a common moment. That moment where you hear you have cancer for me. 

I was 30 years old. I was a media professional in New York City kicking ass, taking names. 

Uhm, and was just having some out of the ordinary bleeding symptoms you know. We are told as women on birth control that spotting is normal. We are told that the body is funny. We are told to trust the doctors and the tests and I did. 

I had a routine path every year for 15 years. Never a single cell out of place never a single abnormal moment. Just trekking along and I started to have more and more bleeding and kept going back to my doctor and said, I understand that you say this is normal, but I think the level of which I'm bleeding is not normal and the from a female doctor was kind of surprising when she let me know that she thought I was being a little bit of a drama queen. And perhaps use the term hysterical. 

Which I found out really interesting as a mere six months later. I went to a new Doctor, she thought she found, uh, a polyp went to do a quick little biopsy and called me in and said that phrase that many of us have heard, you have cancer. 

It was a rather large adenocarcinoma tumor that had originated in my uterus and grew completely through the cervix before it could be discovered. 

Again, I'm 30 years old. I hadn't even thought about having kids I start going down the path that. You know you have to jump through the hoops. The scans the cone biopsy. The oh something's lit up on your pet. Maybe it's spread to your bowel you know all those wonderful things and about 2 ½ months into their fact finding proceeding procedure missions, someone said, you know, you're very young we should think about preserving your fertility. 

And I just thought, well, you know. I'm potentially keeping my ovaries. Can't I do that later? I mean how? And please understand this was in 2009, 2010, yeah? We weren't. We weren't as savvy about IVF, you know, as the way that luckily some of the population is. 

So I went in for a consultation before having I was hoping for trachelectomy, but ended up with a hysterectomy and a lymphadenectomy in a 9 and a 1/2 hour surgery. But before that the doctors gave Me 2 1/2 weeks to do one round of fertility preservation and they wanted $15,000 for that that procedure so like you said, I called my insurance company and they said it was elective. 

Then I said, well I didn't elect to have a tumor and I certainly I'm not electing to have a hysterectomy that's going to save my life. 

At the time I was scheduled for radiation, I knew that the chances of my eggs even surviving you know radiation to you know the groin area were not great anyway and so I ended up you know, biting the bullet and freezing the eggs and moving on with my cancer treatment moving on with my life. 

And spent many years pretty angry about how unfair the situation was. Cause cancer is pretty unfair to start with, and then you pay into an insurance company that if you break your leg, they're going to put you in a cast and xray you. 

But if you are a woman and your fertility is going to be likely ruined by cancer treatment and leaving you without choices, without options. They don't cover you then. 

Nicole 

Yeah, so the rationale with the surgery like the hysterectomy being elective because you were choosing to do that. Or that the fertility preservation part was elected? 

Tracy 

So they did pay for the removal of my uterus but you know they weren't thinking about once they've saved my life, what about the quality of my life? 

Should I want to have a family? Should I want to be able to make that choice when cancer kind of made it for me. 

Nicole 

Yeah, yeah, that's brutal. 

Tracy 

Yeah, it was a it was a a pretty eye opening moment at 30. 

You know, I was really was a lucky person. 

You know, things just generally worked out for me and I could always find a solution to a problem, but at the time the only solution to that problem was just pay for it. I was lucky to be able to do so. Not everyone is. 

Nicole 

I mean, that's a that's a big cost and you have such a short time frame to make the decision and move forward with it. 

It's very emotional. 

And then. 

Tracy 

Yeah, and that's something that's something I think people don't realize is the urgency. 

Yeah, you know, you're diagnosed with cancer, your mind is blown, your life is in shambles. 

You have no idea who you are. 

 One day you woke up and you were, you know. 

A daughter or professional a wife a sister and suddenly you're a patient and you have to do this in a matter of weeks. 

You don't have time for a go fund me or you know, selling plasma. 

Yeah, you gotta move. 

Nicole 

Yeah yeah yeah, you have such a short window. 

So how did you get involved with chick mission? 

Tracy 

I got involved in the chick mission, in a very New York way, OK, I had a friend who knew that I was sick and had a friend who had been diagnosed with cancer three times and she set up a lunch. 

And the three of us went to lunch. You know, in Midtown Manhattan, full of businessmen in suits eating you know lemon Greek soup. 

And I completely thought that they were going to just ask for a donation for their fledgling organization. 

And what? Instead I found out were these women were like minded. 

The founding board had all seen cancer from different angles, which I found appealing. Two of us were survivors, 1 lost her mother to cancer, one supported her best friend through chemo. Another was a mother, Amanda Rice's mother, who helped her through all three battles of cancer and then a reproductive endocrinologist who not only treated me when she was in her training, she was Amanda's doctor and little did we know about a year and a half later. She would also be diagnosed with breast cancer. So our founding ward were just a conglomeration of women who were passionate about letting the landscape change through hard work, determination and badassery. 

Uhm, so they had me from the minute one. 

Nicole 

I love it. 

I love it so tell us a little bit more about your involvement then with Chick mission, you know. 

Tracy 

Yeah, you know the chick machine was a place where I could really kind of lose myself in the work. 

And I was very lucky in the grand scheme of cancer. 

I did not do chemotherapy. I did not lose my hair. There were many, many people who never knew that I had even had cancer, so for me I jumped in as a board member. 

 What that meant for someone like me, I come from media and television, so I planned our gala anytime there was an event you know I produced it I spread the word through my very wide network and just tried to really vhange the conversation. 

So most people are shocked when they find out that insurance companies in the United States do not cover fertility preservation, they just assume that you know, there's a need so it's cover. 

So once I got into that, it was about a year and at our first gala I got up on stage and introduced myself as you know, a Broadway aficionado and eight plus chef and a cancer survivor and in front of a room of 500 people. That was the first time I had ever said that, out loud. 

Nicole 

Oh wow. 

Tracy 

And that was about 7 and a half years after my original diagnosis. 

Nicole 

How did that feel? 

Tracy 

Terrifying.  

I do not like being vulnerable that way, I'm much more comfortable doing so in writing, but then from there it became my life. 

I became the chief executive officer and really worked on you know all of the things that make the Chick mission special and then I became the executive director. 

Nicole 

It's amazing, so that's your full time. That's where you dedicate. 

Tracy 

That's my full. 

Yeah, you know, it's really a wonderful way to speak to my former career, which after cancer honestly didn't fit anymore and my passion for telling stories. 

And that's how I think that the rank and file public understand the plight of young women diagnosed with cancer during their reproductive years, is patient stories. Success stories. And real talk. 

Nicole 

Yeah, absolutely. So what are the what are the goals or? 

What is the Chick Mission focused on today? 

 Tracy  

Well, we're focused on three things because, you know, women are the best multitaskers in the world. 

The the first and foremost thing is, our Hope Scholarship grant program. As you said that is financial assistance on an as needed basis for women who have to freeze their eggs ahead of their life saving treatment. 

I was really happy to update you that our current count of women that we managed to help in 6 states across the United States is 167. 

Nicole 

Wow, Congrats. 

Tracy 

Yes, thank you it is such an honor? To be able to take a little bit of weight off their shoulders in one of the hardest moments of their lives. 

So a lot of our fund raising has to do with our grant program and of course, working with our fertility partners of which we have about 40 across the US into ensuring that patients who need us know about us and get in touch with us because as you know you have to do this in real time. 

My other favorite. Well, I'm trying to like channel Amanda, our founder, she's always like it's the three legged stool. Like that doesn't make any sense, but is advocacy. You know you can give a man a fish. You can teach a man to fish and I believe that what the people who represent citizens of the United States should do is stand up for their choice and their right to make their own decisions about fertility preservation and in 10 states across the US, there has been legislation passed that mandates insurance companies have to cover this. 

And of course, with this amazing moment, there's always populations who slip through the cracks. Women who are on Medicare, different companies whose insurance policies are domiciled in different states, you know, of course, it's very complicated. 

But it really does help come because the chick mission could fundraise until the cows come home, but until the system changes, we're going to be, you know, doing fun runs and you know hosting galas at the end of time and our primary goal is that there's either a federal mandate that insurance companies cover fertility preservation or state by state we go through and pass this and then the Commission will be out of Business and I'll be looking for a job. 

Nicole 

Well, hopefully there's something after that. There's some you know, afterlife of Chick mission. 

The goal which is which is huge but it sounds like you have a kickass crew. 

Tracy 

Yeah, as I say the good news is there will always be work to work to be done for equity for women. 

Which leads to the third part of our mission is education. Whether it's speaking to women groups about how their bodies work, most people are surprised that they are born with every egg they're going to have, I mean there are women who, quite frankly, don't know what their cervix does. 

There are people who don't kind of get what chemotherapy will do to their reproductive system and unfortunately only 50% of physicians speak to oncofertility patients about egg freezing before they go through treatment. 

They assume they can't afford it. They assume they don't have time. And I believe that knowledge is power so part of the education is we talk about it before it's a problem for an individual and God forbid someone they know is diagnosed with cancer so young they can say, hey, you better look into this sooner than later. 

Nicole 

Yeah, absolutely. 

Like those we talked about that window is is so small and I think you know now you see, I see on social media more and more women at younger ages just freezing their eggs just as insurance, you know we're getting married later. We're having kids later. 

We're focusing on careers or other things, so I feel like you know, in the last year, maybe last two years, I've seen that these, you know, something that you know is happening a bit more regularly, but that wasn't always the case. I mean, I think for majority of us we're coming into this where we've really had no introduction to what fertility preservation IVF, any of those processes as a whole, it's just you might have heard of somebody did IVF or needed IVF, but it's so new so coming in and understanding you know you only have those eggs that you were born with. The statistics, I mean for me I was 33 when I was diagnosed and going through it and when they said well, you gonna have. Here's the chart, and here's where you are and you'll get 68% or whatever it was, I was like OK perfect. I'm going to get 68% and I'm going to have x amount eggs like they told me and that was not the reality at all. 

So just being feeling very like uneducated or really just unaware of what that actual process is. So it's really challenging to comprehend the fact that you have cancer and everything you have to go through there. Then try and absorb this whole piece and what it means and we're not even talking about the emotional aspect. 

Tracy 

Yeah, I think it's I think it becomes some something you know almost on your checklist before you can start actually, I hate people say fighting cancer. 

But you know it's it's something you just have to do before you even begin, so you want to get it done and you want to move through it. And like you said, that's not even talking about the emotional standpoint. 

 And I think that you know there's been incredible technological advances where it is getting a little more cost effective on how eggs are frozen so it becomes a little bit more accessible but if you're a woman who's 32 who wants to freeze her eggs because you're killing it at your job and you're not partnered and you're not sure you want to do you have a little time to save up those pennies to do the thing for yourself? That's your insurance policy that will give you kind of a a fertility safety net. 

But like you said, when you're diagnosed with cancer. You're struck by the possibility of your own mortality. And what this means for your life? What this means for your identity? What's going to look like when you go through treatment. 

How you're how you're going to pay for the treatment I mean it's just one thing in a never ending list of I have to buy nightgowns because I'm not gonna be able to wear pants and you know. Just all kinds of things that are just overwhelming in a normal situation. 

Hey, I've had plenty of friends go through IVF and it is a grueling journey and I have so much empathy and you think about doing that on a timetable that's just so accelerated while you're terrified. 

Nicole 

Yeah, absolutely. 

So for those of us listening who are in Canada. There is a, uh, another charity organization that does something similar to Chick Mission. It's called Fertile Future also started by a woman who has a similar journey to you and I and wanted to ensure that you know there was someone who, you know, promoting awareness and amongst cancer patients. They do grants for women and men and also work with several of the fertility clinics across Canada to lower the cost of the actual IVF treatment. 

And I think there's about. I've checked their website, it was about 27 clinics across the country who are doing that. Yeah, so if anyone is in this position listening and you know from Canada, make sure you check out fertile future. 

My next question for you is how are you getting the about Chick mission to women. Like you mentioned, you've got galas going on, you probably do a lot on social media. Are you trying to build any relationships with those cancer centers to educate them or provide them with some materials about Chick mission and ensuring that they get in front of young women? 

Tracy 

Absolutely, I mean everything you've named we're doing. 

You think about the pattern that we’re an all volunteer for organization. Myself and Jane Rice who was our head of our hope scholarship grant program were kind of the only full timers. 

Uhm, and we have about 45 volunteers who are incredible. So that along with our Executive Board, we reach out on social we speak to other organizations, for example, the BREASTIES, who are a really really strong social community for women diagnosed with cancer. They know about the chick mission. We have had incredible inroads with the very very caring patient navigator’s at places like Crook’s Children in Dallas,  Memorial Sloan Kettering in New York, Northwestern University in Illinois, UCSF in San Francisco. I mean, even if they don't have in-house fertility preservation opportunities, they know about the chick mission and they're able to recommend us to their patients. 

So many kind of kind of in our cities, we really want women to be able to choose who they work with, who their Fertility specialist is. You know you have so little choice. So we have at least three in the major city center where we work. 

So if you go through the Sloan Kettering system, you know, they can say these are the five Fertility clinics that the chick mission works with. Feel free to you know, contact any one of them and they'll know how to help you apply for assistance and identify yourself as a fertility patient and everyone moves forward from there. 

Uhm, even in the Corporate World we are very lucky to have a lot of sponsors in the hedge fund and finance world, and in that we speak to their women groups and the women groups know about chick mission. They know about what we do so when they have a friend who's diognosed? They say if these if this criteria applies to you. You should 100% go. 

Through even in a situation where in Houston, TX. We're new there, you know. We really talked to the oncologist and we find out, you know whether there are church groups who have kind of a support group?Whether there are universities who have a women's rights activist group who care about reproductive justice, you know. We really believe that women, when they're diagnosed with cancer, it should not matter your race. It should not matter you know your background and that your socioeconomic status shouldn't decide whether or not you get the chance at biological children. 

Nicole 

No, I totally agree with that. 

What would you say are some of the biggest milestones you've had? You know being part of Chick mission? 

Tracy 

I am so proud. Of so many things that we do, I mean. 

I feel like there was part of me that was half human until I really owned my survivorship status and you know, put that to good work. 

UM, the first thing I could think of is at the end of 2019. No, it's at the end of 2020 we reached 100 patients served. 

So we gave our first grant on Valentine's Day 2018. We probably weren't even financially ready, but there was someone who needed help and we jumped in. So every year we built how many grants we were able to give and it was 100 at the end of 2020. 

Uhm, we had our first chick mission baby who was born in 2019, that's why I had that date in my head. And we did a gender reveal at our gala. 

And it was just it was unbelievable, and we're so happy, you know, for that family. 

Nicole 

Yeah, yeah. 

Tracy 

During COVID we had to pivot as we all did. And we ran two major initiatives. 

The first one was called deliver a dozen and we fundraised enough money just through the Internet and social media to help 12 patients in real time. Uhm, because so many people because of COVID were losing their jobs. Therefore they were losing the health benefits they had. And you know it was a very scary time. 

And the final thing I'll brag about is something we're doing right. Now called the great egg freeze , check greateggfreeze.com if you want to take a look. 

It's a family friendly polar bear plunge that you can do live in person at several hubs across the states. But you can also participate virtually, and we had fundraisers jumping in with us. Whether it was dumping a bucket of water on their dog's head. Or jumping in the lake or pool? Or going in the shower with their clothes. 

We had over 1000 donors give to our 2020 Great egg freeze that took the place of our gala and it didn't matter if it was $18.00 or $1800. 

The fact that all of these people showed up for our community when there are so many worthy causes on a regular day but when you think about during the COVID-19 Crisis there are people who put money to help women in our community. And I am not an Uber emotional person, but I cried. 

Nicole 

Yeah, I imagine I'm an emotional person that makes me teary. 

That's amazing support, what would you say? Is you know, the ultimate goal, or what are you hoping for that chick mission will achieve? 

Tracy 

I hope we’re out of business I hope all 50 states passed legislation to mandate insurance coverage, fertility preservation, or a federal law. 

I would be able. I would love to be able to think about that, there's no one who makes the choice, not to preserve because they just can't afford it. Or it feels too overwhelming. And then we can take everything we've learned and tackle a new problem. 

I just, I think about the average age of our grant recipient is 31 years old and I know some of our local girls that we've met you know they were diagnosed at 21, at 24 they have student loans, they're still dealing with, and of course you know they have wonderful support systems with family, but they're not partnered. They don't know what they want for their future family I didn't either really at 30. And the fact that they were able to make the choice to freeze because of our hard work and our supporters who come back year after year and initiative after initiatives come. I would love to just thank those people and stop asking them for money. 

Outro 

Thanks for joining us on the Gosh podcast. To learn more about the Gynecologic Cancer initiative and our podcast, make sure to check out our website at gynecancerinitiative.ca