NAM: You're listening to (MIS)Treated. I'm Nam Kiwanuka. Barren, sterile, childless. All words that have been used to describe women who haven't been able to get pregnant. In some cultures, there is still stigma and a belief that if a woman can't get pregnant, that they must have done something to "deserve it." Maybe they cheated, maybe they sinned. And even though the science says otherwise, women are still often unfairly considered responsible for not being able to get pregnant. A study from 2023 shows that a fifth of men believe that fertility is a woman's problem. Yet according to the national library of medicine, a part of the National Institute of Health, quote, "Approximately one-third of infertility is attributed to male factors. One-third attributed to female factors. And in one-third of couples, no cause can be identified, also known as unexplained infertility."

NAM: And another myth, that it's only women who may have a biological clock. In fact, men do too. According to The Conversation, an independent publication from the academic and research community, quote, "The age-dependent decline in sperm and semen affects male fertility. In studies of more than 2,000 couples, one study showed men older than 45 took five times longer to conceive than men younger than 25. Another study found the chance of falling pregnant within a year was 20% lower at 45 compared to the peak at 30. Infertility is considered a medical condition by the World Health Organization and here in Canada, it's defined by age. If you're under 35 years old, infertility means you've tried to conceive for twelve months without success. If you're over 35, six months without success.

NAM: One of the key medical interventions for infertility is called in vitro fertilization or IVF. Several women played a role in this science. Scientist Miriam Menkin was the American woman who first fertilized a human egg in a dish in 1944. 34 years later, in 1978, the first IVF baby was born in the UK, Louise Brown. Louise turns 48 years old this year. While the two male scientists received international acclaim for pioneering human in vitro fertilization, Jean Purdy's contribution were forgotten. She was a nurse and embryologist and played a critical role in Louise's birth. Louise's birth caused moral panic about creating life outside the body.

NAM: But if it hadn't been for nuns at the Vatican, we might not even have IVF today. Reporting from Vanity Fair reveals that, quote, "It took 100 postmenopausal nuns one year to produce 30,000 litres of piss. All that urine, collected and processed eventually helped create the drug Pergonal. Pergonal aided in the first successful IVF pregnancy in the United States, as well as countless pregnancies, in vitro and otherwise, worldwide." Today, IVF has become big business. If you ever looked into IVF, you already know it is expensive.

NAM: Ontario insurance covers one round of IVF, but that is rarely enough for success. In fact, the government invested $250 million into fertility support last year, but the pay-to-play model is still going strong. Celebrities have shared their mixed IVF stories and it's hard to get concrete numbers for the success of IVF. What we do know, in the last three decades, IVF has led to a 250% increase in single women in their 40s having babies. IVF has become part of the global fertility market which is worth billions of dollars. Reporting from Toronto Life shows that this market is, quote, "Estimated at almost $50 billion in 2023 and is projected to nearly double in the next decade. In 2024, more than 30,000 Canadians sought fertility care, an increase of nearly 50% in ten years." Today, we're joined by the reporter from that article, Caitlin Walsh Miller and Irene Darrell-Austin, a Toronto resident with lived experience navigating fertility care. We talk about how infertility impacts families, the growing disparity of who can access treatments and why this industry needs to be regulated.

NAM: Please listen with care. Irene and Caitlin join me now. Caitlin and Irene, thank you so much for joining us on the podcast. Looking forward to having this conversation about IVF and the fertility journey because it's not just about IVF. Irene, could you please introduce yourself.

IRENE: My name is Irene Darrell-Austin.

NAM: And Caitlin?

CAITLIN: I'm Caitlin Walsh Miller and I'm a journalist. I recently published an article in Toronto Life about IVF and fertility care in Ontario and the big business behind it.

NAM: I was blown away by this article, Caitlin. I didn't realize what a big business IVF was and all the things that go behind the scenes, because Irene, you know this experience. You didn't do IVF. We'll talk to you about what you did. But when you are trying to have a baby, there are so many emotions involved and then to find out that there's such a huge business behind this, brought up a lot of feelings for myself as a journalist. So Caitlin, before we talk about what you found in your article, what is IVF?

CAITLIN: Okay, well, IVF is in vitro fertilization and it's a kind of assisted reproductive technology, ART, and as you alluded to, and I think as Irene has lived, it's not the only form of ART. There's also, there's also Intrauterine Insemination, which is commonly referred to as the "turkey baster method" and there's timed intercourse, but IVF is really the most invasive and the most expensive option. It's usually something people, climb up to. They kind of go through the other stuff, the less invasive stuff, the less expensive stuff first and end up with IVF or sometimes they're diagnosis or their particular situation will warrant going to it directly, but IVF is a bit, sometimes people call it a miracle. I think it's just, you know, meticulously executed science.

CAITLIN: It is quite an invasive procedure though. I mean, patients are pumped full of hormones. Women. Women are pumped full of hormones so that, you know, they can produce a crop of eggs rather than the usual just one and then those eggs are mixed with the sperm sample in the lab and the lab has to be under very strict conditions of the temperature, the oxygen level, the nutrients, then you've got to throw a whole bunch of luck in there too. And hopefully, fertilization occurs and then if that fertilized egg can turn into an embryo and that embryo can last, can make it to three or four or five days, then that embryo can be transferred into, uh, into the uterus and again, there, fingers crossed, it'll snuggle up into the endometrial lining and nine months later, become a baby, but it's a very, very involved, involved process.

NAM: The word that you used I want to follow up on. You said invasive, so I imagine, if it is invasive, what are the steps someone must take for it to become medically necessary?

CAITLIN: That's a great question. Usually, the starting point is, uh, GP or an OBGYN. Patients will typically try to, try to start, try to conceive on their own and they'll do that for about a year, or I think it's six, they only have to be trying for six months if they're over 35. And then they can get a referral to a fertility specialist. And a fertility specialist, it's a special kind of doctor called a reproductive endocrinologist. Now, there are lots of clinics that actually allow you to self-refer, but even that information is not well-known and it's not clear or consistent which clinics require a referral and which don't.

CAITLIN: But then once you are, once you do make it into the fertility clinic, that's when the testing begins and that's where the invasiveness starts and actually, that's a, it's worth noting that the diagnostic workup is fairly asymmetric. The testing burden falls on women. It's there's, there's lots of hormone level tests, there's vaginal ultrasounds, there's blood draws at specific points in the menstrual cycle. For men, for a male partner, if there is a male partner, it's, you know, a semen analysis, which is a relatively simple and straightforward test, but for women, the procedures can be time-intensive, there's a lot of emotional labour, there's a lot of time off work that's required and the procedures themselves can be uncomfortable and sometimes even painful.

NAM: All I heard was needles.

IRENE: Yeah.

NAM: I have such a needle phobia and Irene, you're hearing what Caitlin is saying. You didn't opt for IVF. We live in a province where most of us are lucky, like, we consider ourselves lucky when we have a family doctor. Caitlin was talking about how some patients self-refer. What reproductive treatments have you done? Like, if you were to describe your fertility journey, how would you describe it?

IRENE: Um. So, from a-- From a second stage in life, because I do have one child. I had my son when I was very young. I had him when I was nineteen. Um, in the beginning, fertility wasn't really an issue. I was trying not to get pregnant. Um, after my relationship with my son's father dissolved, more than a decade later, um, and I was single for a while and I met my husband and we dated, it was a long-distance dating, so, um, it was three years before we got married. He moved up at the end of the year. We got married on Canada Day and he came up just before New Years and for the first little while, you know, living as a married couple, he has three children of his own and I have one child. So, we were waiting a little bit, you know, as a newly married couple before he started to, um, try to have kids, but then once we got married and my husband came with me to the OBG.

IRENE: He's like, "Okay, so when are you guys going to get pregnant? You need to hurry up. You know, you're 35. Basically, you're."

NAM: Geriatric.

IRENE: Yeah. They call you, like, if you have a baby after 35, it's called a--

NAM/IRENE: Geriatric pregnancy.

IRENE: I was like, "Excuse you." Yeah. He didn't say that specifically, but basically the impression that, that what he was stating was basically I need to hurry up because my eggs are dwindling and basically, they're becoming dinosaur eggs and they're going to turn to dust.

NAM: So, when you started to try to get pregnant, what happened?

IRENE: Um. We tried. He gave me an ovulation test and I tested my ovulation, and I'd say it was about six or eight months of doing that consistently and being disappointed every month when my period came, but also, it was strange time because we were also at the start of COVID, so I was going through this process during COVID, I was not working because of COVID. We all got laid off, we all thought we were coming back, you know, next month, next month, next month. But because I had the time, we had the time to start on this journey of, you know, hunting for fertility doctors and going through the process and man, I tell you. (Laughing) I'm not a fan of needles and the first time I went to the doctor, you know, okay, we're here to do some investigating to see if there is an issue why we haven't conceived up to this point and they did a blood drawn the first time and then they have you come back in a week or two and they did a blood draw again and then every single time I went, it was a blood draw and I was, I'm not a big fan of needles, like I said, and it was starting to get on my nerves.

IRENE: Like, they say, "Okay, well, when is your period? When did it end?" And they just keep taking blood and taking blood and taking blood. They're not explaining why they're taking all this blood or why you need to come back for this appointment and why you need to do that. So, I'm like, "Okay, make another appointment in a week, this is a test that you're gonna do. This gonna cost this amount of money." And just continuing for I feel, it was a few months, two or three months before my husband ever got examined for anything.

NAM: Oh, so the assumption was that it was your body that was preventing you from getting pregnant. Not your husband's sperm.

IRENE: Yeah, um, so that kind of, it wears on your psyche because you're like what if I am the problem?

NAM: You said that you were 35?

IRENE: I was 35, 36, yeah.

NAM: Were you? Did anyone explain to you that you weren't able to have, that something was going on? Like, did anyone explain to you that, um, you weren't able to get pregnant because of X, Y, Z?

IRENE: No, um. Not until the very last appointment I had when I met the actual fertility doctor. Um. It was contrast test or something that they did.

NAM: Contrast dye?

IRENE: Yeah. And he said, "Oh, well, the cervix is blocked." And then, he kind of just, "That's it," like...

NAM: He didn't explain what that meant?

IRENE: No. It was just, it's blocked, so--

NAM: And how long had that been from when you started to actively get pregnant to when you were told that you couldn't get pregnant?

IRENE: I'd say we were probably on the journey for about two years.

NAM: Wow. So--

NAM: How did that impact you, not just physically, but emotionally?

IRENE: It didn't feel great. Like, every month when, you know, your period comes and, or you'd be, I'd be late for a week and I'd think okay, this is the time, this is the time. And then, it would show up the next day. And then I'd be like. (Sighing) Maybe it's just spotting. And then, I just kept taking the test and nothing would happen and taking the test and nothing would happen. And because of my first pregnancy with my son, I didn't find out I was pregnant with my son until my second trimester, so I always had that hope in the back of my mind. And then, when nothing would happen, it kind of wears on you.

IRENE: Um. The discussions with my husband-- I think he kind of commiserated with me a little bit, but at the same time, because we both do have children, um, it didn't seem like it was that urgent.

NAM: But it was for you?

IRENE: Yeah, because-- I have a child of my own, he has kids of his own, but for us, as a union, doing it the proper way that, you know, the Church kind of smiles upon because, you know, they're in wedlock and so on and so forth. It kind of wore on me and especially because I was newly married in the Church, I was forever getting the question, "When are you gonna have kids? When are you gonna have kids? When are you gonna have kids?" And people don't really think about when they're asking that question, like, are they actively trying? What are the circumstances behind it? Can they afford it? Is this something that they actually want? And even if you do want, like, it's not something that I ran around waving a banner saying, you know, I'm actively trying to get pregnant. It's still, it's still a pretty private journey to be on when you're on it.

NAM: What did your? It's so interesting because we spend so much of our time judging people. We might not be doing it with bad intentions, but we don't know what's going on in people's private lives. So, you're dealing with this, you're navigating this with yourself, your husband, your community. What did doctors recommend that you do?

IRENE: Um. My OBG had actually stopped going to the clinic that I was seeing him at. Um. He opted to just be at one clinic during COVID, so it was just the fertility doctor. My regular family doctor had also left his clinic, so I hadn't seen my regular family doctor. I was in the process of going to a walk-in clinic. Um. That was my new family doctor. He was only in occasionally. He had an associate, so I was being switched off between two doctors that weren't really getting a full picture.

IRENE: The female doctor from the walk-in clinic said, "Oh, yeah. You know, that's easy. If you didn't qualify, you know, just apply for IVF with Ontario, OHIP covers it." But beyond that, there was no discussion.

NAM: Um. You've said a few things that I want to follow up, but I wanted to bring Caitlin back into this. Um. Caitlin, I think we forget that when we're talking about IVF, this is a very personal thing. It's dealing with a lot of emotions and what you were just describing, Irene, you're being kind of moved around and not having consistent care. But time. I'm sure time at the back of your head every day means one day less for you getting to where you want to be and with women's biology, they keep saying that the younger you are, the easier it is to get pregnant. Caitlin, how does Irene's experience track with what you've heard from the people that you interviewed?

CAITLIN: It's interesting because every single person's journey is so different, but there are these consistent. These, these parallel points across them all too. And unfortunately, a lot of consistent pain points, like that lack of, the lack of communication, the poor communication about why blood is being drawn and what the next test is for and a bit of like a lack of transparency around what's going on and what to expect next. That was fairly universal across all kinds of clinics and all kinds of situations.

CAITLIN: Um. And the feeling like you're, nobody's got the full picture. A lot of clinics, a lot of clinics, it's not, you're not gonna see the same doctor every time. You're not even going to see the doctor like every time at all. You can go months before you see your doctor, so you're always not really sure if everyone is doing everything they can for you do like pursue this, this desire that is so human and so deep and so basic. Um. So, yeah. It really does, it really does track and a lot of the patients that I spoke to used similar language about feeling like a number. Somebody said feeling like cattle. Really feeling like they're being moved through a system and they're not really seen as, like, whole individuals in pursuit of this very based desire.

NAM: Irene, I'm going to ask you a question and I hope it's not too intrusive. You can also tell me, "Nam, shut up. I don't want to talk about this." Why did you not decide to pursue IVF?

IRENE: I think it was that last, um, that last appointment that I had at the clinic where very much like Caitlin said. It was very much like they were herding cattle. I went to a clinic on the other side of the city from where I live for the contrast test. It was, everybody was supposed to be there on a certain day at a certain time. We went into the back, you're given a gown. There was probably like a dozen stalls wide enough for each to just change your clothes and put on this gown. And then, you keep your clothes and you wait to be called into the office and you're called into the office, um. You lay on a table. He does whatever he has to do, sees the image. He says, "Okay, your uterus is blocked, or the cervix is blocked," or whatever it is that he said.

IRENE: And I said, "Okay. I've done all these tests, what do I do from this point forward?" "Well, your option in IVF." I wasn't given another option. I wasn't given, you know, like, here's a support group or here's somebody you can talk to or here's people that have been on the journey. Now just, well, your door is closed more or less. So, from there, I was just like, "It's not worth it. We've already spent a lot of money on getting the testing done." Um. Blood test for myself, hormone tests, that final, um, dye test, a lot of pain with a lot of the tests. I have a pretty high pain threshold, but, like, I was feeling very uncomfortable and the majority of the doctors that I dealt with up to that point were all male.

IRENE: My husband went in and he did his sperm analysis test. He did his test and he went and dropped his sample off at a lab and then the one day where we had doctor's appointments at the same spot for the utility testing, we were separated. There was no point in the process where we could sit there as a couple and be like, "Okay, this is the next step," or "This is why this is being done," or, you know, you're there to support each other throughout the process, they're just "No," "you go here, you go here." "Take the number when they call it." You go through, so I think it was that that last test where I was like, "At this point, we can't complain. Between us, we have four kids. If it happens, it happens. To God be the glory, but if not, then I can't really complain because I know there are people that are on this journey that have never had any kids, so I just kind of acquiesce to life as it is."

NAM: I'm so sorry for what you went through. That's a lot. Um. Caitlin, Irene mentioned that when doctors said to her that she could pursue IVF through the province, my understanding is that, um, you get one cycle or one round with IVF, like, one try. Um. Can you talk to us more about that and what are some of the barriers that people have in accessing IVF.

CAITLIN: Yeah, absolutely. So, it's interesting because it's actually not administered through OHIP. It actually reduces that kind of oversight and regulations. The funding in Ontario's administer it through something called the Ontario Fertility Program. And that gives any Ontario resident access to one egg retrieval and any transfers. Any IVF, any embryo transfers that result. So, if you get no, I think, if you get, if you get no eggs from that retrieval, which is rare, but can happen, then that's your shot. But if you get seven eggs that are viable for fertilization, seven embryos, let's say, then you can have seven transfers.

CAITLIN: Um. And that's great. That's a lot more than most other provinces have, but it doesn't cover, um, there's a lot that it doesn't cover. There's a lot of testing that it doesn't cover, there's a lot of additional optional procedures that are heavily marketed to patients and might get into those later. That was a big focus of the piece and it doesn't cover medications and medications are one of the biggest line items on an IVF bill you're gonna get. They can range anywhere between $3,000 and upwards of $10,000 per cycle and there's a stat, something like 2% of Canadians have private, like, through their private insurance will cover fertility medication, so most, most of this is being paid for out of pocket and the OFP (Ontario Fertility Program) doesn't cover that, so that's a big barrier.

CAITLIN: Um. And then, there's this idea that you get one retrieval and it's whatever result from that is what's covered. It takes, it takes on average, you know, three, two, three, four cycles if it's going to work, for it to work, so it's a great start, but it's far from, it's far from anything resembling universal healthcare that we supposedly have. And even though the WHO classifies infertility as a disease, the way that we treat it here in Canada doesn't match up with that kind of classification.

NAM: It just feels like so much is placed on that one retrieval, right? Like the amount of pressure. Like, the night before I would be able to like sleep. But you mentioned your article. I want to quote some of the things that you wrote in it. You write that as of 2023, the global fertility market was estimated to be almost $50 billion and was projected to nearly double in the next decade. Fertility care has grown by nearly 50% in the last ten years and Caitlin, you write this. "No central agency tracks total expenditures, but in 2023, more than 7,700 privately funded IVF cycles were performed in Ontario. At an average of $20,000 a piece, that's more than $150 million spent in this province alone.

NAM: And with birthrates plummeting to historic lows, 1.2 births per woman in Ontario, well under the 2.1 needed for a population to replace itself, the demand for assisted reproduction keeps climbing. Fertility is now one of the fastest growing healthcare sectors and one of the least regulated." That part of your article just blew my mind. How did IVF become a big business?

CAITLIN: Um. In lots of different ways that are all kind of merging, converging now. I mean, we're, as you've mentioned at the top, we are, we're, you know, we're having babies later and different kinds of families are making families. Um. There are, you know, queer couples and there are single parents by choice and then there's just, you know, advanced maternal age is the clinical way of addressing it. So, there's lots of reasons why people might be looking for assisted reproductive technology.

CAITLIN: There's, you know, the economy. People are not wanting to not having as many children and delaying that, so that feeds into it as well. Um. And then there's just the way that we treat it, which is so different than the rest of healthcare here and I think that contributes to the, the weird feeling patients have going through this because they're not used to thinking of healthcare with a price tag, but because it's not an insured service in Canada the way that, you know, cardiology or anything else is, um, almost anything else is, um, it's a private, it's a mostly a for-profit privatized system and that gives a lot of opportunity for additional, additional treatments to be offered and it's highly unregulated, it's highly unregulated, so the bar for what you can offer patients is more commercial than it is clinical, which can lead to a lot of treatments and optional interventions being offered that don't necessarily always have the most robust scientific evidence behind them.

NAM: Why isn't this industry regulated?

CAITLIN: That's a great question that nobody has a good answer for. Um. It, it, you know, it, as it came up, as it came up as a private industry, there was a push for regulation as it started proliferating and the number of clinics started exploding and it actually got quite far. The Canadian, the College of Physicians and Surgeons of Ontario pushed the, pushed the government, pushed the Ontario government for a stronger regulatory oversight and they developed training guidelines and recommendations from labs and all kinds of things in 2015, 2016, and they were all ready to go in 2017, and then the government changed and that was a priority that was shelved and then nobody has a good answer for why that hasn't been taken off the shelf and put into action.

NAM: I really want to get your reaction to this, Irene, because when I was reading that paragraph from Caitlin's article, you had a look on your face that I want to come back to, but I'm thinking that if you are a perspective parent and you are going through this journey of getting IVF, and this industry isn't regulated, and you believe in your heart or you're led to believe that if you pay for this thing, this thing will allow you to get closer to that dream. So, the fact that it's unregulated, how does this impact prospective parents?

CAITLIN: It has a huge impact. There was, you know, a friend of my editor on this piece who went through IVF, my editor was speaking to them about everything we were finding out through the reporting on this piece and the, it was a heterosexual couple, the woman said, "I wish this article had come out before we went through this." And her husband said, "What difference would it have made? We would have done everything we could to have our daughter," and that's the thing is that people will do absolutely anything that they think might have the tiniest chance of helping, but there's a lot that has no evidence that it might help. Some things might even slightly harm your chances of becoming pregnant.

CAITLIN: Um. And so, if we had more regulation and more oversight, there's some of these items that are on these essentially, these menus, that we could, that we could be more careful about. It's not necessarily about banning or restricting access to things, it's just having more, better critical conversations about who certain treatments and add-on procedures are for rather than just offering patients, kind of, this buffet of choice that they don't necessarily have the time, energy, expertise to properly parse and make informed, informed consent is really tricky in fertility.

NAM: And also the price tag.

CAITLIN: Yes.

NAM: I'm just thinking of the sacrifices that people have to make. Um, Irene, how does it feel hearing about the way fertility treatments have become monetized in this way?

IRENE: If-- If you think about just having a baby. There are so much price tags attached to, okay, you found out you're pregnant. Um. Leading up to the actual birth, you have all the medications that you need to keep your hormones in balance, all the vitamins you need to take. Starting on a fertility journey, I was taking all the medications and I was taking all the vitamins and my husband was taking all of the vitamins. Somebody was profiting off of all these, you know, hormonal things that we're doing. And then, you do all the testing and you're, somebody's making money off of that. And when it came down it and the price attached to the actual IVF treatment, I was tapped out.

IRENE: I, I couldn't in good conscience continue on the path knowing that, okay, if this does work by some miracle, if I'm able to get this to work, what money is going to be left to help me with okay, now I'm pregnant and we have this baby. What's gonna help us financially after we've spent all of that money? I feel like it kind of puts you in a position where the people that have, can have the babies, and the people that don't have, can't have the babies. So, it creates inequity.

IRENE: It, there's definitely a line. The clinics that I sat in, um, always very beautifully decorated, very spa-like, very quiet and tranquil and very modern furniture and lovely seating. But realistically, like, if that was is where all the money is going, that's not my life and as nice as the furniture is and as quiet as the music is and, you know, when it comes down to it, especially as a woman, a lot of our self-worth we've been engrained is tied to our fertility, tied to our ability to have kids, tied to our ability to expand our families. So, from that standpoint, I just, it kind of discourages you if you're not able to and I know of people that have gone through similar things and just don't talk about it at all.

NAM: Because how do you process that loss?

NAM: Um. Caitlin, your piece highlighted that last fall, the Province announced a $215 million expansion into fertility treatments, including at 25% tax credit on eligible expenses. How will that impact access to fertility treatments so that it levels the playing field for all Ontarians?

CAITLIN: Yeah, the clinicians that I spoke to, the doctors that I spoke to are very hopeful. Um. And what it did do is that it reduced wait times for funded cycles essentially immediately. Um. So, from one day to the next, I saw on fertility websites like, now, no waitlist for the, for the funded program and that is good. Um. More money for fertility care is great, but again, it doesn't address the additional costs which run in the tens of thousands. Even when you are doing your covered, your funded cycle.

CAITLIN: And then, there's also, um, when you start your journey, patients report thinking that, you know, all clinics are created equal, and they're really not. Um. They're really not. There's a physician, a leading reproductive endocrinologist did a freedom of information request with the provincial agency that kind of track birth outcomes and on nationally, the average is 33%, like, one in three transfers results in a live birth, but in Ontario, the real range between clinics is anywhere between 10% and 46% of success that the public has absolutely no access to that data and even this freedom of information request, the results were anonymized, so we don't know which clinic is which, but patients have no idea what kind of clinic they're walking into and so, even if it is beautifully decorated, as Irene says, we don't know what that actually means in terms of what's happening in the lab and what's happening with protocols.

CAITLIN: Um. 10% of 46%, that is a huge gap, so the patient can't even make an informed, there's no informed consent, right? And I keep thinking about that lack of regulation because it's easy to see how some could exploit people who are trying to have children. Your article brings up a concern that because of all these new treatments, is fertility treatment healthcare or a product? Caitlin, what have experts you've spoken to said?

CAITLIN: Well, that's actually kind of at the core of a current class action lawsuits that are working their way to the Canadian and American courts over an add-on treatment called PGT-A, which is a test that is offered to screen embryos to see whether or not they have the expected or the normal or abnormal number of chromosomes.

CAITLIN: And the essential legal question there is, um, is this healthcare or is it a product? And the, the plaintiffs are arguing that it's a commercial product because it's being marketed directly to patients and it's making, they allege that there's no false advertising, that it's, that it's, that it's misleading in terms of how much it can help, but because these are products that are being, patients are being spoken to, directly marketed to directly, um, it's really, really treating, really treating this kind of healthcare like a product. And I don't think you see that anywhere else in healthcare.

CAITLIN: That's right. I was, you know, I was, last fall, I attended something called the Canadian Fertility Show. Which is held yearly in Toronto and it's really kind of a microcosm of what's happening. It is a marketplace. There are different kinds of venders there selling all kinds of different things, but there's also clinics and advocacy groups and there's really established advocates and experts in the space, but there are also, um, you know, clinics, international clinics that are offering treatments that are, some of them are banned by the FDA in the States, but a lot of patients travel to Europe to get certain treatments, certain treatments that are also allowed, that are also offered in Canada, so it's such a range. It's such a range and it's really hard for patients to navigate that system, especially when they've sunk a ton of money into it already, so they think why not keep going.

CAITLIN: Um. And they, their emotions are high, their emotions are fraught. It's just an impossible, an impossible maze for people to try and make their way through.

NAM: Mmm. It's like a breeding ground so much harm that can happen. Um. Irene, I know the search for consistency in your healthcare has been really difficult, but now you're going to healthcare centre in your neighbourhood. Can you tell us about that?

IRENE: Yeah, so last year, um, I-- My husband was looking for some healthcare and a friend had recommended the TAIBU Community Healthcare Centre. She was on the board. Um. But since, um, putting in our registration and starting with the clinic, um, we started with our doctor January of last year. It's the first time that I've had a Black female doctor ever. Um. I had a Black doctor previously, but it was for eyecare.

IRENE: Um. And because of the way the clinic is set up, I'm able to get so much more fulfilled in my healthcare journey, so when we came out of COVID, or when we came into COVID, I had been in a car accident. Um. That's kind of where all of the shuffling of doctors were, a lot of doctors were not maintaining the clinics they were at, so on and so forth. So, I was attending a walk-in clinic across the street from me.

IRENE: Because it's a walk-in clinic and the doctor had several other clinics, he's only in certain days of the week, and because I was working part-time at the time, those days didn't always work with the schedule that I had, so I wasn't able to see my doctor. Now, when I go to TAIBU, not only are my sessions with my doctor meaningful, because it's not, "Okay, what's your one complaint? Okay, if you have another one, book another appointment." But I'm able to spend anywhere from ten minutes to an hour with my doctor. It's full body, so since going there, I've been able to see my family doctors. She's done my OBG treatments for me because I lost my OBG. I've been able to seek, um, physiotherapy for my injuries that I'm still recovering from. I'm able to see a psychologist, a dietician. So, even though I'm seeing several people at the one clinic, because it's a community clinic, all the doctors are kind of involved and talk to each other about the one patient to make sure that it's a full-rounded treatment. So, it's a wrap-around service.

NAM: I'm so glad that there's like a happy ending in this. Thank you so much for sharing your story and being so generous with your story. Caitlin, thank you so much for your input. I just wanted to give you both an opportunity to add anything if I missed it. Caitlin, I'll start with you.

CAITLIN: Well, I just, to try and add on a happy note myself. Um. The physicians that I spoke to were hoping that with his expanded funding, they're hoping that that gives the government added incentive to demand some more accountability. Maybe use that money as a bit of leverage to get more oversight and more accountability from the system that it's funding.

NAM: And Irene?

IRENE: Um. I think it's just important to A, be able to talk with people. Um. Both inside and outside of the industry to build a support group for it because a lot of research that I had to do for myself, um, both on the journey and outside of the journey. A lot of Internet. A lot of, I don't know if Internet was the greatest place to be searching, but Internet searches and just like general talks with people, but I think it's you have to go through the journey with either a chip on your shoulder and the ability to cry openly or with enough confidence to say, "You know what? I feel like this is the end and I'm gonna step out and let decisions lay where they lay." So, for me, I think I'm okay with where I'm at now. (Laughing)

NAM: Honestly, you being able to talk about it and to share your experience is going to help a lot of people who are listening to this, so thank you. Um. Support is what I'm hearing, like, people who've gone through the fertility journey need support outside of the... Google. (Laughing)

IRENE: Definitely.

NAM: Thank you both so much. I really appreciate it.

CAITLIN: Thank you.

IRENE: Thank you.

NAM: This was (MIS)Treated. Thanks for listening. You can follow our show wherever you get your podcast, so you can get notified each time a new episode is available. We would love to hear your feedback. You can write me an email at mistreatedpodcast@tvo.org or reach out to me on social media. This week, we have a comment from Instagram on our episode on cervical cancer.

NAM: This comment is about the lack of funding for conditions that impact women. Why is funding so segregated? Why isn't there a related application for redirection distributing of funds, shared research made available? That is a very great question. Um. And I think I will continue to ask it on the podcast. Thanks so much for adding that comment. This week's episode was produced by Tiff Lam and me. And edited by Colin Kish. Digital shorts by Ariana Longley, camera work by Max Stussi teleprompting by Cristy MacLeod. Production support from Jonathan Halliwell and TVO's digital media services team. Laurie Few is the Executive Producer of Digital, Stacey Dunseath is acting Vice President of Programming and Content. Thanks so much for listening.