Episode 64: Fertility Planning for Cancer Patients with Emily Capilouto

The Patient from Hell (00:00.59)
Hi everyone, this is Samira, the host of the podcast, The Patient From Hell. I have an incredible guest with us today. Emily, thank you for joining us. I think you bought a second guest. We're gonna start with your second guest, Charlie.

Emily Capilouto (00:12.332)
I have my dog Charlie. She is currently going through lung cancer, so she wanted to give a guest appearance on the podcast. So this is Charlie. She is, I think, 11 or 12, and she was diagnosed about six months ago. But she's doing great. She is still barking all of the time,

demanding treats, going on walks, so we are, we're hoping to have her around for a while longer, but yes, so if you hear her bark, this is her, and she just wants to be part of the community.

The Patient from Hell (00:59.054)
well Charlie, I hope you feel okay. I heard coughing is one of your main symptoms.

Emily Capilouto (01:05.868)
It is. It's one of her only ones. And we did do a surgery and they got a good portion of it but weren't able to get all of it. But yeah, she's doing otherwise great so she may pop in and voice her support and opinions. Hopefully not too much. But yeah, that's Charlie. Hi!

The Patient from Hell (01:26.798)
Wow, I was not expecting that, Emily.

Emily Capilouto (01:29.804)
You know, she's always surprising us.

The Patient from Hell (01:35.566)
Wow, you know, it's one of the reasons we didn't get a Bernese Mountain dog. So my husband and I really wanted to get a Bernese Mountain dog because I wanted a cuddly thing. He wanted a big dog. And, you know, we were on the wait list, COVID parents. And my big, big, big giant fear was Bernese Mountain dogs are known to get cancer early.

Emily Capilouto (01:39.34)
Yeah.

Emily Capilouto (01:59.5)
Really? I did not know that.

The Patient from Hell (02:01.518)
Yeah, and I just was like, no, no, no, no, no. I mean, this was your entreatment. And I was like, that feels way too, way too close to home. No. So we ended up rescuing two dogs. First two dogs we saw. One is a husky. The other one is a chihuaha mix. They both have their very different shares of very, very different issues. But we love them entirely. And my husband and I are not allowed to go to any shelter.

Emily Capilouto (02:05.228)
Yeah, yeah. No, that's a lot to handle.

Emily Capilouto (02:21.612)
gonna say.

The Patient from Hell (02:29.966)
Because the running joke is, we will just come back with that.

Emily Capilouto (02:30.708)
came home with a dog when I was younger. My mom took me just to look. We came home with one where my whole family are dog people. And so these, I have my dog here and then my mother's dog, cause she's out of town. And they're both cockatoos and they're both cuddly and also too smart for their own good. So it's a dangerous combination,

but hopefully they will let us get through our conversation together and not cause too much attention grabbing.

The Patient from Hell (03:06.848)
Right, fair enough. Okay, we're gonna start with, well, second chapter, I guess, second topic. So you have a really cool master's. I looked at it and I was like, whoa, that feels like something I wanna go get now. And maybe we start there. What is medical anthropology?

Emily Capilouto (03:25.228)
Yeah, so medical anthropology, I absolutely loved this course of study and getting this degree. And I came to it by way of, I have a master's in public health and epidemiology. And so that master's looks at health issues from a population level. And so you're looking at issues of significance within,

a variety of different population subgroups, and then ideally trying to make an intervention in order to improve health. And while that is a wonderful course of study, I felt that epidemiology really looks more at the group. So you look at, you know, population as a group of individuals and not as individuals part of a group.

The Patient from Hell (04:14.67)
So, you can try out the whole package.

Emily Capilouto (04:20.748)
And so I really wanted to center the same questions about health and health experience, but center those more with people that were going through them and experiencing them in order to then inform interventions or other ways we can address experiences of life course and health experience. And so,

In many ways, medical anthropology is the more qualitative version of that quantitative degree of epidemiology. And I think both work really well together, especially when we're looking at issues like cancer, that while this is of population significance,

The Patient from Hell (04:53.902)
Thank you.

Emily Capilouto (05:11.916)
everybody's individual experience varies, but can also inform others, inform treatment and improve the lives of others impacted by cancer or by other chronic diseases. So that is how I came to medical anthropology. And I absolutely love it. And I think it really does help me still do many ways, you know, work on behalf of the health of the public,

but in a way that really centers people.

The Patient from Hell (05:45.39)
Emily, maybe before we jump into our sort of primary topic around fertility and IVF, maybe you can talk a little bit about kind of what your day job is today. Because it feels like you're attacking cancer, attacking cancer, sorry, pun intended, from multiple directions. So maybe, so we spoke about kind of the personal, we spoke about your educational, and professionally you're working in oncology too. So maybe you can talk a bit about that and then we can go into the main topic.

Emily Capilouto (06:13.484)
Yeah, so I work for the Mike Slive Foundation for prostate cancer research and we are a nonprofit based in Birmingham, Alabama. And we have, you know, the main focus of addressing prostate cancer. And we do that through funding cancer research, focusing in the area of prostate cancer at any point throughout the life course. And also in...

The Patient from Hell (06:15.726)
So, just.

Emily Capilouto (06:41.356)
raising awareness of this disease and educating men and their families about personal risk as well as screening options. A lot of what we do is talk about the fact that like many cancers, there is a hereditary link in prostate cancer. And so if you have a first degree relative in your family that has had prostate cancer, you have double the rates

of having a prostate cancer diagnosis yourself. And that's significant because one in eight men in the United States will get a prostate cancer diagnosis in their lifetime. And so that is cut in half. So one in four, if they have a first degree relative that has that. And this is significant because we have asymptomatic screening and early detection options for prostate cancer. And...

We only have that for a handful of cancers and prostate cancer is you know a little tricky simply because since it is a reproductive cancer there is you know historically a stigma attached to it and so a lot of what we do at our organization is encourage men to share their stories, encourage men to talk to their families if they have male relatives and encourage men to take the first step which is screening for many men,

that is getting a prostate specific antigen test, which is a blood test. And to talk to their doctors earlier than maybe they think they should to make that screening plan because when caught early, there are many, many treatment options for prostate cancer. So we do that and we fund seed grants for researchers for proof of concept. And we hope that they'll go on to get...

larger grants at the federal level and we've had two so far do that. And so they have, you know, multi-million dollar, multi-year grants that are being funded starting from Group of Concept from our grant program. So that's how I kind of use my backgrounds and how I work with people and encourage them to tell their stories because I really believe that storytelling,

Emily Capilouto (09:04.876)
and sharing your personal experience is really the way to change the game for cancer, cancer detection and treatment.

The Patient from Hell (09:15.822)
Thank you for sharing that. I feel as though I just got, I actually don't think I realized the adjusted risk when there's a first degree relative. So I super, I'm walking away learning.

Emily Capilouto (09:29.772)
also encourage men that, you know, if you have a history of prostate cancer in your family, you do also need to talk to the women in your family because they may not have a risk for prostate cancer, but there are some genes that can raise your risk for female reproductive cancers like ovarian cancer that can be associated with the same genes that one might have a

mutation for that can raise your risk for prostate. So we encourage people to talk about that. And I'd also state that, you know, black men and African American men have even a higher rate. So they have like a one in six chance of getting a diagnosis in their lifetime. And we're not exactly sure why, but they're being diagnosed with more aggressive forms. And so many researchers are looking into what

the causative agent might be about that, but we really want our men of color to have these conversations with their family and also with their doctors because of their increased rate.

The Patient from Hell (10:35.278)
Thank you for sharing that. I very much appreciate it.

Emily Capilouto (10:36.204)
Yep.

The Patient from Hell (10:39.95)
I told you this the last time we spoke that we're only in the experimental phase of our podcast format and we're going to try a rapid fire. Okay. So rapid fire. I'm going to ask you, I think I have honestly quite a few questions for you. Short answers because we live in a world where people want tiny clips and videos. So for those of you... All right. You ready? Okay.

Emily Capilouto (10:45.196)
Yeah.

Emily Capilouto (10:49.228)
Okay.

Emily Capilouto (11:02.252)
I'll do the best I can and you can use what works.

The Patient from Hell (11:09.55)
When should a cancer patient and their family ask about fertility?

Emily Capilouto (11:14.188)
As early as possible after diagnosis.

The Patient from Hell (11:20.91)
What kind of doctor helps manage fertility treatment?

Emily Capilouto (11:24.78)
A reproductive endocrinologist.

The Patient from Hell (11:27.662)
What is a reproductive endocrinologist?

Emily Capilouto (11:29.996)
They are a specialty within obstetrics and gynecology that works to do IVF and other forms of assistive reproductive technologies.

The Patient from Hell (11:42.03)
What does IVF stand for?

Emily Capilouto (11:44.012)
IVF stands for in vitro fertilization.

The Patient from Hell (11:47.374)
What does in vitro fertilization mean?

Emily Capilouto (11:50.156)
In vitro fertilization is a form of ART or assisted reproductive technology that outside of the body uses an egg from a female and sperm from a male and with the assistance of an embryologist makes embryos from that and then monitors them as they grow. And that can include, you know, genetic testing for viability as well.

And then with the assistance of a reproductive endocrinologist, then implants that into the person that is attempting to get pregnant.

The Patient from Hell (12:31.406)
What is ART?

Emily Capilouto (12:33.42)
ART is assistive reproductive technologies and that can include everything from fertility treatments in general, so medicines that can improve your risk, your risk, your rate of conceiving on your own. So that can be, you know, taking some hormones or timing intercourse with the assistance of some medicines. That can also include IUI or intrauterine insemination

where using fertility treatments and hormones, you are inseminated with sperm either from a partner or a donor to time conception when you ovulate, or that can include things like IVF in neutral fertilization where the egg and sperm are fertilized outside, the egg is fertilized outside of the body

and then put into either the patient or a surrogate in order to conceive. And there's a variety of sort of, you know, I'm learning a lot going through this myself, but there's a variety of different treatments that can improve fertility. And it's a large spectrum. So within that, ART is anything that is a medical intervention that helps you.

get pregnant and sustain a pregnancy. Sorry, not rapid fire, but it's a big question.

The Patient from Hell (13:58.35)
Why does it? No, I know. I'll break it up into some questions. Don't worry.

Emily Capilouto (14:04.236)
Yeah, I was like, I can give you a smaller version where I say this. ART is an assistive reproductive technology and it is anything that is medically helpful in getting pregnant and sustaining pregnancy.

The Patient from Hell (14:21.806)
Why does a cancer patient need to use fertility treatments?

Emily Capilouto (14:25.612)
So many cancer patients choose to use fertility treatments because there is a chance that treatments and surgeries that they will undergo to fight cancer can impact fertility.

The Patient from Hell (14:37.966)
Is that true for both men and women?

Emily Capilouto (14:39.82)
That is true for both men and women.

The Patient from Hell (14:46.19)
What is surrogacy?

Emily Capilouto (14:48.428)
Surrogacy is when an embryo is placed into an individual that is not the intended parents, so not the biological parents. And it is used, you know, in many states, it's used primarily for when somebody cannot conceive or carry a pregnancy on their own, but still has the desire to have a biological child because they're able to still form

viable embryos.

The Patient from Hell (15:19.854)
What is the difference between surrogacy and IVF?

Emily Capilouto (15:24.204)
The difference between surrogacy and IVF is that IVF is the method by which a surrogate will get pregnant. And people can carry their own biological children with IVF, or they can use a surrogate using the process of IVF to carry a biological child or those intended parents due to potential complications as to why they couldn't conceive or sustain a pregnancy in a...

healthy manner.

The Patient from Hell (15:59.566)
What is the difference between IUI and IVF?

Emily Capilouto (16:03.884)
Yes, IUI is intrauterine insemination. That's when fertility medications and the timing of ovulation is used in order to use either sperm from a partner or sperm from a donor to time conception where the egg and sperm meet inside the body of the intended parent. IVF is using similar medications, but instead of

having the egg and sperm make an embryo inside the intended parent, it happens outside of the body.

The Patient from Hell (16:42.19)
What happens if IVF doesn't work?

Emily Capilouto (16:45.484)
If IVF doesn't work for an individual that wants to carry a pregnancy, depending on their situation, if they're able to form embryos, they may be able to use a surrogate in order to carry a pregnancy, or they can use donor embryos from another...

couple of that can form embryos. Some people can then carry those pregnancies themselves. So they can still be the intended parent carrying an embryo of other genetic material. Or there are other sort of family planning options that are, you know, may be appropriate for extending your family in ways that are not biological. I myself am adopted. And so adopted adoption can be

one way to build your family if that's what you choose. And for many, that is one of many options in growing a family.

The Patient from Hell (17:49.486)
You answered my next question too. Are there other ways to create a family outside IVF?

Emily Capilouto (17:51.052)
Yeah!

Emily Capilouto (17:54.956)
Yes, there are many, many ways to create a family outside of IVF. I myself am adopted. You can adopt, you can foster, you can have relationships with your loved ones and your family that have children. You can choose to grow your family by not having children and by having instead other things and other...

you know, animals that you love, whatever makes you feel, you know, whole in your life is the appropriate way to choose to build your family and that can or doesn't have to include children.

The Patient from Hell (18:34.798)
What is the difference between fertility preservation and IVF?

Emily Capilouto (18:40.108)
So fertility preservation includes some aspects of IVF, but can also, that can include for people that have a cancer diagnosis or about to also undergo treatment for other complex chronic illnesses that may not be cancer, that may impact fertility. So maybe severe autoimmune diseases, for example, or if individuals need

you know, parts of their reproductive system removed. They can either get eggs retrieved, so in the future they can form embryos with a partner or a donor. They can form embryos and freeze those as well. Or in some cases, you can have different medications that can suppress certain parts of your reproductive system

where they put you into, for example, menopause to try to stop things like ovulation or try to repress that until it is safe for you to do so again. There's also aspects to fertility preservation that may include taking certain parts of tissues and having those be, you know, medically stored or suspended in proper ways that then once the individual can try to conceive again, they can use

those tissues in order to do so. So there's a lot of different aspects and it would depend on what the patient is going through and what's appropriate for them.

The Patient from Hell (20:17.102)
Emily, I'm a bioengineer and fertility preservation and IVF is– I am struggling.

Emily Capilouto (20:25.324)
It is really complicated and it's a wild thing to go through because as a woman, you sometimes knowing your cycle will start, you sometimes know these sorts of things and then you go through IVF and they have everything timed to like the exact 30 minutes through these medication timing. So it's wild to me how high level scientific concepts and then...

putting that inside the human body and like literally timing it and measuring everything. So yeah, it's quite more complex than I thought it would be.

The Patient from Hell (21:03.182)
So I'm going to share a little bit about my fertility preservation experience. I'd love to hear about yours because I know you're in the middle of it. And I suspect that between our two stories, I think we'll cover two sort of very different points of view on navigating fertility. And I was 30 when I was diagnosed. I remember getting the – January 10th or something. I got the diagnosis. And

Emily Capilouto (21:10.156)
Yeah.

Emily Capilouto (21:18.188)
Yum.

The Patient from Hell (21:31.342)
We were getting, I was getting worked up for starting chemo two weeks, no, a week before my chemo cycle was scheduled. My doc calls me and goes, do you want to have kids? And my now husband, he was my boyfriend then, we've been together maybe a year and change at this point. And I was just like, what? Why in the one, why is this relevant? Two.

I'm starting chemo next week. He goes, well, if you want to have kids, we need to one include the medication you're talking about ovarian suppression, right? So shutting down my ovaries, but Samira you should also go and get a consult with a fertility specialist. And I was like, I don't wanna deal with this. It's a lot and my husband now was like,

Emily Capilouto (22:21.548)
Yeah, it's a lot.

The Patient from Hell (22:26.382)
you know, we should at least consider it, we should resolve the option. And we had a fun conversation and then went in to the appointment and it was a version of what we just went through, right? Like this rapid fire, like, I had no idea, like the difference between preservation and egg freezing and embryo freezing and like IVF and ovarian suppression and what the pros and cons are. And I remember just getting into this rabbit hole for like a good two weeks.

Emily Capilouto (22:55.18)
Yeah.

The Patient from Hell (22:55.598)
Not two weeks, two days, ended up at this appointment. The doc is wonderful doc, gives me all of this more information and data. And it was like, okay, go sleep on it and come back and tell me what you want to do. So I came back, did more research. My life solution to complex problems is Dr. Google, unfortunately. I went down the rabbit hole and I just, this is sadly how I show up.

Emily Capilouto (23:16.044)
Same. Same.

The Patient from Hell (23:25.07)
I sat and did all the probabilistic, like, if you do egg freezing, what are the odds of you being able to conceive? If you did embryo freezing, what are the odds of you being able to conceive? If you did nothing, what are the odds of you being able to conceive? If you just did nothing and ovarian suppression, what happens, right? But I am in like deep, deep, deep statistical land. And then I'm like, wait a minute, hold on. Let's say I even wanted to do this. It's going to cost me an arm and a leg

Emily Capilouto (23:35.468)
Yep.

Emily Capilouto (23:43.784)
yeah.

Emily Capilouto (23:52.588)
Yep.

The Patient from Hell (23:54.062)
because insurance doesn't cover it. So I show up the next day, I was like, well, barring the, you know, $40,000 it's gonna cost, my conclusion, again, my personal conclusion, my personal preferences, was it made no sense.

Emily Capilouto (23:55.788)
Not at all. Not for most people, yeah.

Emily Capilouto (24:13.42)
Yeah, absolutely.

The Patient from Hell (24:16.302)
And it was just this moment of like, I just went through the roller coaster ride for like three weeks, delayed chemo start and netted out that it made no sense. And I'm sitting there and the doc goes, well, California just passed this law that says that if you are a cancer patient or a survivor, it has to be covered by insurance. And that just happened. So do you want to change your mind? And I'm like, God, no, no, no, I'm not going through this whole thing again.

Emily Capilouto (24:22.956)
yeah.

Emily Capilouto (24:37.184)
wow.

Emily Capilouto (24:43.18)
I'm gonna need my discriminator. Yeah.

The Patient from Hell (24:46.478)
That was my story. I'd love to hear yours.

Emily Capilouto (24:47.852)
Yeah, no, and it's your story is, you know, unfortunately for many, like very, very common way they come to ART or IVF because they've just gotten this cancer diagnosis and then they're having to make all of these decisions before they start either chemo or surgery. And it's like, it's a very tough decision to make and to make in a constrained amount of time.

And yeah, and I have had two friends that are also young breast cancer survivors, and they both chose very different fertility preservation options. One, I don't know all of the details, but essentially was able to preserve her one whole ovary, so she was able to do that by having

one removed so she's able to do preservation that way and then I had another friend that did formed embryos. Both of which because they had their diagnosis in their early 30s you know they were told there is a very big chance you won't be able to conceive naturally and then both I think at this stage are over five years in remission and and so they

both conceived naturally, they just were able to, and so they have these backup options. So you never really know because as you know, cancer varies so much individual by individual, and then how you respond to certain medications and what, I mean, when we talk about things like breast cancer, what type of breast cancer you have and what hormones you can and cannot take is so individualized. So yeah, making these treatments available for...

for everybody because they're not one size fits all is what I feel we really need to do. My route to IVF is very roundabout. So I am adopted and six months after I got married, I've gone off birth control for the first time and I started having heart palpitations and actually got a notification on my Apple watch that said,

Emily Capilouto (27:14.188)
two notifications on my Apple Watch that said that my heart rate had risen past 120 while resting. And I thought that was odd. So I reached out to my GP and I said, I've gotten these notifications. I think it's probably related to my thyroid. Since I've recently gone off birth control and my hormones are still regulating, do you mind giving me like a thyroid panel? And I go in and she's like, yeah, we'll do your blood work, but also like, let's get you an EKG.

And so she did, and at age 33, I was diagnosed with a congenital heart defect called Wolf Parkinson White. And the type of Wolf Parkinson White I had was, you know, higher risk for sudden cardiac death, which I did not know, because I'd just been living my life. And I was told to immediately stop trying to conceive, as if I was pregnant

their ability to correct it would be really complicated. And if I was pregnant, it could potentially put my life in danger. Yeah, because I had extra electrical pathways in my heart. So my heart was like skipping a track and going on the wrong track and I was getting these heart palpitations. And so I had never been, never had a surgery, never been in the hospital at this point. And my first thing ever is a multi-hour

heart surgery and it went very well. I am now technically cured of this congenital heart defect and I feel great. I had wonderful doctors, but through this process, it was mentioned to me that some forms of this can be, you know, inherited and that I should consider in preconception counseling to just get a general, you know, panel of inheritable genes done,

these gene mutations. And this is something that my clinic offers to anybody that wants to go through preconception counseling. And so they test for things like Tay-Sachs and they test for other sort of inheritable disorders. And so I do this because I'm adopted and I've now had this really rare outcome. And I test positive for a mutation, a very, when I say rare, I mean extremely rare

Emily Capilouto (29:38.764)
mutation that it is a subtype of an already rare condition where if my husband has the exact same mutation we have a one in four chance of having a child born without functional bone marrow. And this was you know even in the tests that they sent us they say we got to get your husband double-checked for this but it is unlikely he has it. Well...

We're super lucky when it comes to rare illnesses and he had the gene. And so a lot of my job is encouraging people to know their genetics so they can make empowered health decisions. And then we are presented with a subtype of already complex illness that then the subtype that we have ensures that a child that we have is born with this

would need bone marrow transplants to survive and that the outcome for most people with this is having various forms of leukemia or other forms of cancer due to the fact that you don't have functional bone marrow or a functional immune system. And so being, I'd never heard of this condition before and being in the field that I'm in,

I immediately went to support groups and I immediately went to Facebook pages for individuals and families impacted by this to see what is the quality of life, what are people with this illness saying? And they were all advocating for genetic testing and IVF if possible. And so I, you know, I listened to those that are impacted by this directly.

And my husband and I chose to do IVF in order to avoid this mutation. And it was a very difficult decision to make because as you mentioned, my insurance doesn't cover this. So infertility in and of itself is a recognized disease and so insurance, although not always, but sometimes does cover infertility treatments.

Emily Capilouto (31:55.436)
As you pointed out if you have another diagnosis that prevents you from safely having children naturally without a RT like a cancer diagnosis, many times I think now everyone but many times like that can be covered, but in my situation there is not anything when you proactively are trying to select against a a you know complex and also a

eventually terminal inherited gene. And so, and to be clear, as of right now, individuals with this subtype do not have full lifespans. They tend to not make it to their 20s. So it is not something that, you know, is something that is at this point with science survivable. And so we had to do a lot of financial planning and we had to...

figure out what to do, and then from there we had to begin a process of making multiple appointments for genetic screenings and testings. And so through this process, and to be clear, this wasn't even a cancer genetic panel. And so we then opted in to do cancer genetic screenings for both of us since we were already doing IVF. So we had to also take multiple months to do that and

you know, and get all of the counseling. And so between that and between some procedures to prepare me for successful egg retrievals and hopefully a successful transfer, it's taken us two years. And so we're oddly in a place that many people with IVF journeys are not where we're also not actively trying to conceive. And we are having to rely on this fully so that we can have

a healthy pregnancy and a healthy, you know, child. And when I say healthy child, like to be clear, we are not guaranteed a child with no health issues. All this ensures for us is that our child has the same chance of having functional bone marrow as any other child. They can still get, unfortunately, leukemia like many people do,

Emily Capilouto (34:17.164)
they can still have other health issues, but let's just make sure that it's more of a level playing field for a potential future child. So we had our first egg retrieval in October and we were really, we were really encouraged because we sent off I think nine embryos and we were like this is a great number, especially because at this point I am now...

I was 35, I'm now 36, so my first egg retrieval I was 35 and I was like, okay, this is great. And then all but one came back as non-viable or inherited arm mutation. So that was really difficult to go from nine to one. And because of my age and because I've also never tried to conceive naturally, so I don't know if I'm also infertile,

we made the decision to go through with a second egg retrieval. And again, each of these are like out of pocket payments. So at this point, we are upwards of $50,000 invested in two egg retrievals. And the second egg retrieval was done in January on January 31st of this year. And I know that date because...

The Patient from Hell (35:23.182)
Boom.

Emily Capilouto (35:39.436)
Within a few weeks later, the Alabama Supreme Court would hand on a ruling that stated that embryos in the state of Alabama have the same status as legal children. And this has turned IVF care in the state of Alabama completely upside down. And so my clinic immediately halted services along with

all but one clinic in the state of Alabama providing IVF. Because the the ruling was handed down by the Alabama Supreme Court based off of a lawsuit that was brought referencing the wrongful death of a child act. So this is an act that Alabama's had on the books since the 1800s, I believe.

And what unfortunately had happened to the couples that brought this suit was they had their embryos destroyed because a patient that was not of sound mind went into the cryopreservation area of a hospital and actually opened their cryopreserves embryos and dropped their vial on the ground.

Of the couples that brought this suit, they all had already had live children through IVF. So these were their embryos that they have not yet used or had long-term plans for. And I do not believe that they intended their lawsuit to have the impacts on other families trying to access IVF care. But due to this ruling, it did. And then we were at a standstill for about

three weeks because giving the legal status of children to embryos in our state meant that if a clinic in any way mishandled embryos in any way destroyed, whether that was by the choice of, you know, the parents of those embryos or due to lack of viability, they could be charged potentially with homicide

Emily Capilouto (38:05.804)
because this now has the status of a legal child. It also made it impossible for our state to transfer embryos outside of the state, which for many clinics, they house long-term embryo storage outside of the state. And the issue is because that could potentially introduce questions of human trafficking.

The Patient from Hell (38:22.638)
Thank you.

The Patient from Hell (38:30.35)
Thank you.

Emily Capilouto (38:34.412)
and so there were so many legal issues that came up that no one in our state, and I think many in our nation never thought they would have to grapple with and have to grapple with with such an immediacy. And so while this is taking place, we had sent 12 embryos for genetic testing for viability and we then were put into limbo.

The Patient from Hell (38:39.374)
Thank you.

Mm -hmm.

Emily Capilouto (39:03.884)
So we had no idea the status of our embryos, if any of them were viable. If I need to find another way to do a future egg retrieval, if none came back, I'd need to start care in a different state. We didn't know what that would mean for the one embryo we did have that was currently at our clinic in Alabama, if we'd ever be able to access that. And...

We did not find out any of the answers to any of those questions until 4:30 PM, the night before our governor signed a bill that reinstated the ability for these clinics to practice IVF care with immunity. So we found out at the literal last minute. And then the next day

clinics in Alabama began offering IVF care again. The issue primarily is that this is a band-aid bill, so it actually expands, it expands immunity to anyone practicing IVF in the state of Alabama in a way that potentially puts patient protections at risk and also still doesn't answer questions about long-term storage.

Or ways in which you can dispose of or donate embryos in our state. So one of the things we were hoping for our non-viable embryos, so embryos that have this severe genetic mutation or other mutations, would be to donate them to science because they potentially could help find cures or treatments. So that now is truly up in the air. I have no idea the status

of our embryos that are not viable because we did sign all of our disclosures and agreements for them prior to this ruling. So I have no idea how they're impacted or if they're grandfathered in. And so I say all of this because we were hoping for a transfer in March and due to the stoppage of this and due to the fact that many

Emily Capilouto (41:28.684)
women and couples were in the middle of treatments when this was disrupted. They have had to push everybody back and so our first attempt at a transfer will take place at the end of next month. So three weeks cost us about, you know, three months or so in an already arduous journey and we have no idea if it's gonna work the first time or if we're gonna have to do multiple more transfers or, you know,

future egg retrievals and so, you know, not only is somebody impacted by this, but as somebody working in cancer care, I just wanna make sure this doesn't happen to anybody else in our nation. This is just truly unacceptable and it could happen at any point because it really, in our state, it took, you know, just a...

small amount of people on our Supreme Court to hand down a ruling that no one in our state or in our country anticipated coming in this way. So that's that's my IVF story.

The Patient from Hell (42:40.846)
We've been in this podcast, Emily, for two years. And I have interviewed so many cancer patients, family members, researchers. The cancer stories we hear are wild. You hear some pretty wild stories. I don't think I've heard anything, anything remotely close to what you just described.

Emily Capilouto (43:06.988)
Yeah, it's pretty bonkers. Yeah, and that's the hardest part. So like you share your story and they come to you about ART and fertility preservation and you've just gotten a cancer diagnosis. Like I came by way of this incredibly rare mutation that's also devastating. And I only know about it because I've had this like horrible brush with like maybe like cardiac

The Patient from Hell (43:08.174)
I'm a little like, whoa, what just? What?

Emily Capilouto (43:35.948)
death issue. And, and so, you know, those are just two of the ways I mean, many women and couples come here because they have had multiple pregnancy losses, or they have other severe reproductive health issues like endometriosis. And then to have on top of that, someone who is not a doctor, somebody that is not in a medical field at all, make a ruling

that then effectively cuts off any of those care options for women and families going through this, is just like an undue cruelty that, you know, getting to this point is always inherently traumatic. And then to add this burden of lack of access or in many ways, moralizing healthcare decisions because of differences in...

ideological backgrounds really is a level of hurt and pain that I just I just don't want anyone else to have to go through.

Emily Capilouto (44:49.42)
And the worst part is I'm lucky. So like one of my best friends was going through this. And so she has had some losses and she's spoken about that publicly. So I can say that. And she is during this, her transfer date was immediately disrupted. So she had a transfer on the books. They had to push that back

The Patient from Hell (44:53.102)
I was just gonna say.

Emily Capilouto (45:17.324)
and she's actively injecting herself with Lupron going through this because Lupron is a commonly used medication for the treatment of endometriosis during IVF. And so because of this ruling, she then had to make the choice with her doctor to either stop and then have to wait six more weeks to have a cycle restart and recovery,

or to take their chances and continue on Lupron. And so she continued on Lupron for three to four weeks past the recommendation because she would have lost six months, six weeks to multiple months. And they had already gotten her embryos to where they needed to be and they were working on beginning the process of following them. And so it's like, you're putting people in these very difficult situations.

And that's why, you know, we definitely need federal protections for this. If not, you know, individual states making legislation to protect, but I think, you know, federal legislation would be far more effective. And that's the hard part is, you know, many of the medications used in IVF are also used in cancer treatments.

The Patient from Hell (46:40.238)
I was just gonna say.

Emily Capilouto (46:41.452)
I mean it's it's and that's the other thing I don't want to discourage anybody from doing IVF because in the same way that many people you know when they reflect on their cancer experience and they say like I accomplished things I never knew I could I was stronger than I knew it's it's in many ways you know it can be related to that where it's like you put yourself through these things and then you're like okay if I have to do it again I will

because like this is now the new normal. So I don't want to tell people it's not something they can handle. I do want to say I hope nobody has to go through this. But yeah, like to prepare for my transfer next month, I'm going on letrazole. So I'll be on a estrogen suppressant that's commonly used in breast cancer treatment. And that's just like a normal course of treatment, so

you're really impacting families that have already been through a lot, that are maybe here because of horrific diagnoses like cancer, then are on, you know, chemotropic medications and they feel like absolute crap, and then you're like, and you can't do it, because like I'm citing a law from the 1800s, and you're like, what? And that's what happened in Alabama.

The Patient from Hell (48:08.398)
I have - I literally have nothing to say.

Emily Capilouto (48:09.292)
There's no words for that. That's wild. You know? And all of it, for every person I've talked to, yeah, even if your insurance covers part of it, they're not covering all of it. So like, you have thousands of dollars of medication just like in your pantry right now. And like, you may not be able to use them because there are no...

The Patient from Hell (48:15.31)
I have nothing to say.

Emily Capilouto (48:38.828)
protection for this. So yeah, it's, there's no words. I mean, it's really, it is, it is just the most wild. I knew IVF would be hard and it hasn't been the easiest thing I've ever done. But I will say the state of Alabama made it far more difficult than it needs to be. That's

The Patient from Hell (48:41.354)
I'm sorry.

Emily Capilouto (49:08.268)
I would have appreciated them staying out of it. That would have been much.

The Patient from Hell (49:13.71)
I was talking to someone. I have two quotes because I have nothing to say that is off my own, because this honesty has stumped me. I will borrow from other people though. I had someone this week tell me that navigating cancer is like getting a PhD. You have to get the PhD to be able to navigate cancer. I had another person tell me that the trauma of getting through the healthcare system...

Emily Capilouto (49:32.3)
Yes.

The Patient from Hell (49:43.502)
is worse than the trauma of getting the cancer diagnosis. And honestly, I think your story summarizes that. The trauma of the experience is worse than you getting a diagnosis for sudden cardiac death. and the genetic mutation.

Emily Capilouto (49:59.176)
that was addressed within two months of diagnosis. I was cured. Meanwhile, there is just so much testing and surgery and downtime and wait. And then, you know, the thing that I guess, of course it makes sense, but most people forget like this is all on your menstrual cycle. So like for many people, that's four to six weeks depending.

And if you have PCOS, that could be different months. And, you know, and so it's just like, you're always waiting for the next three, four weeks. And if you lose a month because of, you know, buffoonery at the state level, then like, you're actually losing three or four months. And it's, it is, it is wild. And it is just so unnecessary for people that as, as you point out,

are already going through so much personally, financially, and then mentally and emotionally to even access this treatment. And again, like I cannot speak to what it must feel like to go through this after multiple losses or after years of trying to get pregnant and not being able to. That has to be emotionally and psychologically traumatizing and devastating.

And so then it's just this undue burden of suffering. And I think that really, I think this particular IVF struggle has highlighted that, but I don't think that's unique to IVF.

The Patient from Hell (51:44.494)
Yeah, I think that's true. I think you synthesize it really well right now. It's the undue burden. It's not the burden, but it's the undue part, right? It's the part that honestly it's not acceptable. And unfortunately, I think the medical system, broadly speaking, across diagnoses has undue burden.

Emily Capilouto (51:46.38)
Emily Capilouto (51:50.892)
Yeah.

Yeah.

Emily Capilouto (52:04.58)
yeah.

absolutely. And I'm so fortunate because my doctor, she got her wife pregnant through IVF. So she has been through this as a family personally. So she is not only informed as a doctor, but knows how difficult this can be when you have to inject your partner every single night and you have to see these hormone fluctuations.

But then on top of it, I feel as if the times I've come to her with questions, I've had some questions about my treatment and she's been willing to modify my treatment or say, why don't we try this instead of this? And again, I'm very fortunate because I can also speak to these things due to my backgrounds in reproductive cancer. The majority of people are learning all of this for the first time.

And as you say, have to get a PhD just to have these conversations. And the stakes are very high, you know, because this is all out of pocket. And this is all like, if that cycle doesn't work, when's the next month you're going to be able to? And yeah, and it really, you know, I often say I've had so far, you know, I don't want to jinx myself, but I've had like the best version of a horrible experience. I...

I also, you know, because IVF is really, is also because it is trying to have a child in a way that requires medical intervention, people also have very different views about if it's appropriate or not. And so I'm really fortunate because in the 80s, my mom went through IVF. It didn't, unfortunately, I mean, fortunately for me, but not fortunately for her, it did not work for her. So I'm adopted.

Emily Capilouto (54:04.076)
But to have a mother who has been through this and can understand and supports me and my dad, you know, emotionally being present and knowing what I'm going through. My mom has come to every appointment that my husband can't make, including he was obviously present for my egg retrievals because he has to provide his sample to make the embryos. My mother still came and she was like in the waiting room because...

The Patient from Hell (54:07.662)
Thanks.

Emily Capilouto (54:32.332)
She wants to be supportive and many people don't have that option because they don't have family that will support them.

The Patient from Hell (54:44.526)
And we are looking at, I'm looking at our time too. And as I think I suspected, we would definitely run long on this one for very valid reasons.

Emily Capilouto (54:54.828)
Yeah, that's fine as long as that works for you and as the dogs don't bark for no reason.

The Patient from Hell (55:00.622)
I actually think we should wrap up and have you come back in a couple of weeks and tell us about kind of the next chapter, because I think this is something that it's a much bigger issue than I think one hour can justify.

Emily Capilouto (55:08.524)
Yeah.

Emily Capilouto (55:14.54)
No, that works for me. We have our transfer scheduled for the last week in June, and it'll just be based on, because we're doing a modified natural cycle, so it'll be based on whenever. I have, because of the background I have, I'm open about all of this, and I was before I had to speak publicly about it, so I'm happy to speak with you guys anytime next month or...

I can even speak after the transfer and tell you what that process was like, whatever works. And yeah, I think it's that's the balance that I want to strike is I don't want this to be something people have to go through. But if you have to, it is doable and you will get through it. And so I'm happy to give you sound bites or a blog or a vlog or whatever you need after.

The Patient from Hell (55:48.014)
Let's do that.

Emily Capilouto (56:12.012)
And I'm around and yeah, I'll talk to you. I'm the left resolve too. You may not like me, but I'll talk to you.

The Patient from Hell (56:19.054)
Don't you worry, I've been on my share of hormone therapies. I very much relate.

Emily Capilouto (56:22.404)
and like, and you're just like, and then they just tell you as if like, no big, and you're like, excuse me, what? And they're just like, yeah, you'll just, you'll be in menopause for a week, and then we'll try to get you pregnant. And I'm like, where in the world do those two sentences make sense? That makes no sense. Like, I'll be a menopause one week, and then the next week we're gonna try to get me pregnant. That's not...

And it's, you know, it's that's the science of it. So I hope it works for us. But if that's not if that's not on the face of it, some of the most bonkers things I've ever heard, then I don't know what is.

The Patient from Hell (56:53.678)
I think that's it.

The Patient from Hell (57:02.478)
I think that's where we pick up next time. I think we start with that statement right there. And in the meanwhile, I hope you have the best version of this horrible experience.

Emily Capilouto (57:04.268)
Yeah!

Emily Capilouto (57:10.508)
Thank you. I hope it goes well and hopefully we move through the expected timeline and I get to talk to you at the end of the month when I've had my transfer. So thank you so much for your time and yeah I look forward to speaking with you again. And if you have any questions in between just email me. I'm here. You know how to find me. Okay. Talk to you soon. Thanks for your time. Bye.

The Patient from Hell (57:21.998)
Thank you, Emily. That's so awesome. Thank you so much.