Misconception: Money Money Money

Published Jul 30, 2024, 8:00 AM

As Kristen stresses about how to pay for fertility treatment, she meets people who had to go extreme lengths to afford the services in a system where insurance coverage is spotty. And she travels to Oklahoma to check out one company that’s trying to make the treatment accessible for all.

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Before fully committing to this whole egg freezing thing, I figured I should probably figure out what it was going to cost me. Yeah, it's Kristin Brown, and so I called up a fertility benefit provider. Yeah, I am interested in egg freezing, and it's my understanding that I can use. I never actually did figure out how much it would cost me, but I did learn something very interesting. While health insurance in the US generally doesn't cover IVF or egg freezing, even when it does, there are some big exceptions, exceptions that can make it way more expensive. Oh really if I did embryos. Oh wow, So it would actually potentially be cheaper. If I froze embryos with my partner step, the cost of freezing and storing them would be covered. If I froze eggs on my own, it wouldn't be. I found this shocking. Even with great benefits, my relationship status was a potential obstacle to affordable fertility care. It was a stark contrast to the image I was seeing online.

We believe that going to the doctor should feel like a visit with a trusted friend. If knowledge is powered, then a fertility information shouldn't still be a mystery.

Our mission is to enable fertility care for all people, regardless of age, sexual orientation, gender identity, race, marital status, or geography. The fertility themed YouTube videos and Instagram content making its way into my feed as a thirty something woman made it seem like this whole process would be empowering or something. In reality, this was no picnic. Just to break it down, freezing eggs would require me to self inject high doses of hormones multiple times a day to ramp up my egg production. Then a doctor would have to surgically remove those eggs in what's known as a retrieval to make embryos, those eggs would have to be furtile and a lab And if I went down the road of doing IVF, that would involve weeks of more drugs thawing those embryos, and a doctor implanting them in my uterus, which still might not work. And I noticed that none of what I was seeing really touched on how expensive all of this is. No one seemed to want to tell me how much it was going to cost. I started to wonder who could afford this? On what lengths do people go to when they can't. I'm Kristen B. Brown, and this is misconception. Money isn't the only problem. Sometimes even getting an infertility diagnosis as a major obstacle. That was the case for Regina Townsend.

My periods were raging, my hormones were out of whack. I had mistres cycles that lasted upwards from sixty to one hundred days.

She's telling me about a really frustrating time in her early twenties when she was trying and failing to get pregnant.

It was ridiculous, and I was going back and forth to the emergency room and trying to figure out what was going on, and I just kept getting told that you're thyroid and lose weight.

It all started because she was on an online message board. This is pre Facebook. It was called Chocolate Brides, but a lot of people Regina included hung around on the site even after they got married.

They would have like home buying journals and then pregnancy journals, and then it would become a point where some people were like mentioning that they were having trouble getting pregnant and I was like, Oh, that's interesting. I didn't know black people dealt with that, or they'd mentioned going to a fertility center, and I was like, oh, they must have money. That's a thing that we don't do.

Slowly, she started to connect the dots.

Maybe those stories that I was hearing from, those are the ladies on chocolate brides, aren't just anomalies. Maybe those are like real things that are happening to everybody. And then I got mad because then I was like, well, nobody told me this, and nobody said this was a thing, and stereotypically, from what I see, it is presented to me as though Black women are hyper fertile and hyper sexualized and you need to just monitor your body and make sure you don't get pregnant. And I was like, but nobody told the whole story.

In fact, a lot of studies have shown that black women have higher infertility rates than white women, much higher, but they're less likely to get help. Regina started a blog about her experience, the Broken Brown Egg.

I just started writing things like, you know that aunt that never had kids, maybe she couldn't. And I got so many private messages from people that were like, oh my god, thank you for saying that, because I have been dealing with this for years.

Figuring out the cause of her fertility troubles, though, was not straightforward. A doctor who read her blog suggested that based on her symptoms, she might have polycystic ovary syndrome or PCOS, which can affect fertility. The doctor who was treating her dismissed the idea outright. Then there was the issue of paying for all the treatment.

It took ten years to get to our son because there was a lot of back and forth. There were times where I had insurance and my husband did it. There were times where I didn't have insurance. There were times where we were trying to figure out how to get the thyroid under control. And then also it's a lot of waiting game. It's a lot of Okay, we're gonna take this medication and then we'll see what happens in the next three months. We'll see what happens in the next six months, We'll see what. So your time is just moving along.

After six or seven years of trying treatments that never worked, Regina found out that her fallopium tubes were blocked. The only way she was ever going to get pregnant would be IVF. She also found a good doctor who accepted her insurance.

So many years of hurry up and wait, and then all of a sudden things just kind of took off, and so we did IVF in twenty fifteen, and our son was born in twenty sixteen.

Regina got pregnant just one round of IVF. It's crazy to think about everything that she went through. For years. She was spending money and time and all these treatments that were never going to work, rearranging her life to shuttle back and forth to the doctor all the time, putting off other major life decisions. It was far too long of a journey, and one that's not at all uncommon for women of color, whose medical problems are often overlooked. Really, though, Regina's story highlights a lot of the different sorts of problems we have with fertility care here in the US. Given how often she was dismissed, it's kind of amazing she's stuck with it at all. Our fertility industry is mostly set up to serve people who are white, married, wealthy, and heterosexual. Everyone else gets left out in one way or another. In some cases, fertility policies exclude LGBTQ people by saying the benefits only apply to people who are infertile. There have been several discrimination lawsuits filed over this, one against ETNA settled in with the insurer agreeing to make artificial insemination a standard benefit and make it easier for LGBTQ people to do IVF. When asked about the suit, ATNA said it's committed to providing quality care to all individuals. Only four states in DC have mandates requiring some fertility insurance policies to include LGBTQ and single people. That's according to the civil rights organization GLAD. And yet in most places, whether you need to do IVF because your tubes are blocked or you're in a same sex couple, there is no coverage for IVF. Private health plans often deem fertility treatments not quote medically necessary.

So many people tell me like that being in this journey change is how they navigate, you know, when they're applying for jobs and things like that. That I know so many people that like leave one job, that go work at Starbucks because Starbucks offers the coverage.

It's hard to know exactly how many people don't have coverage because it varies so much depending on where you live in work, but it's a lot of people. Only about half of large employers offered fertility coverage in twenty twenty two, and without coverage, many people find themselves facing an impossible choice. Come up with tens of thousands of dollars or give up on the family of their dreams.

We'll be right back.

The economics of IVA for a little like Russian roulette, a high stakes game of chance. How much you're going to have to spend is pretty much impossible to pin down. There's the cost of office visits and hormone injections and drugs and egg retrievals. They're add on tests and procedures doctors often suggest. And then once you do it all once, you very well might have to do it again and again.

And so we had to keep spending more and more money.

Things got more and more expensive.

I called it like the cults of Never Give Up.

It was this very urgent laden kind of sales pitch. That's what it felt like to me. They kind of want to keep you coming back.

Tens of thousands of dollars.

There's the coll pays, then there's the medications that you're taking up to that. Then there's the gas.

We're a couple of years in fifteen thousand in five value wise, in.

We're talking about ten to fifteen thousand dollars here.

People are making major economical decisions based on what's covered so that they can build a family.

Even with good fertility coverage. I was wondering if I could afford to freeze. There were some things that weren't covered, and no one could give me a real estimate for what they might cost. Drugs alone could wind up costing a few thousand dollars. Regina told me she raised money for uncovered costs by hosting a paintent sip and selling T shirts and applying for grants. One industry expert had told me I should expect to pay for about a third of the total cost out of pocket, whatever that mystery number might be. Would that be two thousand dollars five thousand more? All I could do was guests. It was like applying to college without knowing the price of tuition. My own financial woes left me wondering how people without fertility benefits paid for all this, which, as I mentioned earlier, is the majority of people Katie, while wording, told me that she and her husband did all sorts of things to come up with the money for IVF.

So our first thought was we'd go to the bank, but the loan percentage was a little more than what we were hoping for.

When embryos got stuck in her fallopian tubes, she wound up losing both of them. Doing IVF wound up replacing other goals. They put off buying a house, they cut back on extras. Even then, they didn't have enough, so when the loan didn't work out, they borrowed money from their parents. Finally they had enough for one round. They live in Iowa and had to drive seven hours to their clinic.

The first round, it was a little over twenty thousand dollars. Since we went so far, we had to pay for like hotel, stay what not for about two weeks for the egg retrieval, so that was about twenty thousand dollars. And with the first transfer, we still had to pay for our medications and that was about another five grand, which was so excessive. I don't think I've ever had to call my bank so many times to approve certain purchases.

For Katie, though one embryo transfer didn't turn out to be enough. An embryo implanted in the tiny stump of a fallopian tube that she still had left it wasn't a viable pregnancy.

So now we're just kind of on the road of doing another transfer after our last failed transfer. But now that we've come this far and it's already cost us this much, we've kind of reached out to other platforms.

I guess Katie and her husband decided to try and raise money via the crowdfunding platform go fundme because fertility treatment is so expensive. Go fundme has a special IVF fundraising page that people like Katie and her husband can use to seek help from loved ones and even strangers, but after several months, they had only raised just over two thousand dollars of the more than twenty thousand they would need.

I'm not very good with technology, but my nieces are trying to help me go on TikTok and put something on there, so that'll be our next thing to try to get people to hopefully, you know, reach out and help us. My niece has thought where if twenty thousand people could give you a dollar, you'd be golden. So that's our hope.

I found a lot of people like Katie on GoFundMe. It does hundreds of couples trying to raise money right now to have a baby. The company told me that nearly ten thousand fertility fundraisers have launched on the site since twenty ten, raising more than six point eight million dollars. People have to get strategic to figure out how to pay for IVF, but I only met one couple who actually managed to raise most of the money they needed by fundraising. Shae and Tanner write to start a family. They were forced to do IVF because Tanner has terminal cancer. I talked to Shane Tanner over zoom.

So Tanner is my husband here. He was diagnosed with stage four colon cancer at age twenty five. Tanner really wants to be a dad, and I wanted to experience that with him.

I'm talking to both of them, but Shae does most of the talking. You can tell Tanner is tired. He's reclining against a wall. Tanner for a sperm after he was diagnosed. Since treatments like chemo can affect your fertility, they only had one sample of tanner sperm, so doctors recommended IVF, but their insurance didn't cover anything. Shay was already working multiple jobs while also getting a degree in marriage and family therapy in her spare time. She came up with a creative idea for how to raise the money.

So we did an IVF auction. We contacted businesses that were based in Utah and we just asked if they are basically like donating either items or services to her auction. So we had a puppy we had like a trip to Alaska. Someone donated like a cabin for a week in Alaska, and then we held the auction on my personal Instagram. That took like seven hours to list them all and then for a week the auction was open and people were just bidding on the items throughout the week.

They raised most of the money they needed that way, twenty two thousand dollars. They also set up a gofundmeme after some people reached out wanting to donate instead of making a purchase. Through that, they raised another twelve thousand.

So it wasn't relieve and I was just shocked at all of the generosity of people.

Shay was able to use social media to raise a ton of money and put IVF within reach for her and Tanner, but even that might not wind up being enough money if, like Katie, they end up needing multiple rounds of IVF. Should building a family really be dictated by how much money you have? We'll be right back. As I got deeper into the process freezing, I was starting to realize how insane this whole system seemed. It wasn't just the cost and the odds of it not working. For example, one of the reasons it's not only expensive to get fertility treatment but also hard to get an appointment. So there just aren't enough fertility doctors. And that's because the number of federally funded fellowships and reproductive endochronology is capped each year. Several people told me that there are not enough doctors and there aren't enough being trained to catch up with the growing demand. I started wondering if anyone was approaching things differently, if there was another way to do fertility care that might make it more accessible to people.

Please remain seated with your seatbelt securely.

Fascinating, which brought me to Oklahoma City and to a fertility startup called Mate.

Are you far away from Home?

Yeah?

But you know so One of the things I've been doing is exploring different options. I'm doing egg freezing, and it's so much less expensive here than when I got quoted in New York. It's literally half the price.

A lot of people do that.

We have people from Washington, Kansas who come here.

It comes here really because we're cheaper.

Wow. Maye is focused on three related problems, the cost of IVF, the shortage of IVF doctors, and access to IVF outside of wealthy, big cities, and its solution to those problems. It's sort of radical. It's ruffled a few feathers. Instead of hiring fertility doctors, partners with obgyns and trains them how to do fertility care. I was intrigued. At Maine's Oklahoma location, a freezing cycle was fifty four hundred dollars inclusive of everything. That's a lot cheaper than the ten thousand I was quoted in New York. My appointment started with a nurse taking my vitals.

I'm going to have you uncrusha way.

Yeah five.

Then I saw doctor, I'm just gonna go over your history first and then we'll start from there. Okay, okay, that sounds good, all right? He told me a little bit about what I might expect at my age age.

I'm going to show you a little graph here.

Thirty seven years of age, your chances of having a abnormal embryo is about forty percent.

That number drived with other datea I had seen. I definitely didn't feel like I was getting the candy coated version of things. When I was there, the Oklahoma office was in the midst of a major expansion. Oklahoma City has just one other fertility clinic, so there's a lot of potential demand on top of the patient's mates getting from all over the country. For the big picture, I caught up with Mate CEO Tracy Keene. She told me that the company is trying to figure out how to meet demand that the industry just can't currently serve.

The industry was built as a niche for high net worth individuals. This industry wasn't built to accommodate the fact that roughly thirty percent of the population probably needs some form of intervention at this juncture.

This system is backed up. I experienced this firsthand. One budget fertility chain I looked into had a two month wait for just an initial phone consultation. Actually signed up for a consultation and paid a deposit and they never called me Mate.

It's focusing on the supply side of the issues. When I say supply side, I mean fundamentally, there aren't enough providers and there aren't enough clinics to meet the demand. There were two point seven million cycles that didn't occur that needed to in twenty twenty one. There are more reproductive andnochronologists retiring than are graduating from the Fellowship on an annual basis. And so the model was really built in this way to say, Okay, how do we enable everyone to practice at the top of their license.

Tracy told me that by hiring obgins to do fertility care, they were able to not only drop prices, but open in cities where there are fewer options, like Oklahoma City and Waco, Texas.

Mate's model.

We're not doing high volume centers. We're partnering with individual practices to build a practice that will do, you know, five hundred cycles a year. So when people want to talk about, you know, what's your competition, I'm like, the sky is the limit here. We could build thousands of these and there would still be more people who need access to care.

I talked to several patients who said they were only able to afford treatment they needed at ME. One patient even drove to Oklahoma City from Texas to do IVF meet has attracted a fair amount of criticism, though. When I asked the professional group that oversees fertility doctors about METE, they told me they were concerned that patients wouldn't be getting the level of care and expertise they needed from an obgun that had limited fertility training.

It's like a lot of kinds of medicine.

There's a lot of stuff your internists can do for you, there's a lot of stuff they can't, or that a specialist would do better.

So I don't think we have.

Dat yet that says, okay, which steps are really appropriate for somebody who's in OBJN.

That's Sean Tipton, the head of advocacy and policy for that fertility doctor's group. One day he said roles like nurse practitioners might be able to help satisfy that demand. Typically those jobs still work under the supervision of an expert doctor.

I don't think we know yet what the right answers are going to be.

Tracy finds this argument a bit old fashioned, though.

We have babies being born, we have good clinical pregnancy rates. As we expand to new markets geographically throughout the United States, I think we're going to get a much different picture of what infertility really looks like in this country.

For example, Tracy said, the average age of an IVF patient at MAATE is a lot lower than the national average, which is thirty six point three.

Our average patient age in Oklahoma City is thirty and a half. That's very different. There's a lot that we don't know.

It's actually hard to say whether infertility is really on the rise or if there's just some combination of more awareness of infertility and people starting families later in life. What's for certain is that the number of people seeking out treatments for infertility has risen twenty twenty one. According to the CDC, nearly two hundred and forty thousand patients underwent freezing or IVF cycles. More than ninety thousand idea of babies were born. The government's latest data shows the number of fertility procedures has risen pretty much every year, save for a dip during the pandemic. May isn't the only company I found coming up with truly novel approaches to solving the problem of access to fertility treatment. Another one was cofertility, which allows women to freeze their eggs for free if they donate half of them to another family. It's not clear whether co or mate or anyone has come up with the right solution yet. What is clear, though, is that many people are struggling to figure out how to pay for a family. One of the wildest things I learned reporting this podcast is how often we just have no idea why someone can't get pregnant. There are just so many ways in which the female reproductive system is still a black box. In my reporting, I came across so many people who spent tens of thousands of dollars and never found out what was wrong. I kept thinking about this one woman, yes in upstate New York. She did thirteen rounds of IBF and never had a sustainable pregnancy. Doctors just kept tweaking her IVF protocol every time. Jess convinced herself that this would be the time it worked, that the new formula was the winning formula. Something like thirty percent at the time. The cause of infertility remains unidentified, so often we're paying for treatment with really no idea of whether it will work. She spent over one hundred thousand dollars. Eventually, she told me her body was just so broken that she and her husband decided to reimagine life as a childless couple and they were happy. A few years later, she had her uterus removed, and doctors told her that it was unlikely she would have ever been able to have children anyway. So many people described to me feel isolated and in the dark. That's definitely how I was feeling after I found out it would be more expensive to freeze eggs than embryos. Stuw happened to be visiting at the time, so I told him about it. At that point, I hadn't shared many details with him because when I started thinking about all this, I thought I'd be freezing eggs on my own, and I honestly didn't know when in a relationship it's appropriate to discuss freezing embryos together. Now upside down industry economics were forcing Stu and I to make major relationship decisions. Okay, that was very interesting. Basically, we do need to have a conversation on eggs versus embryos because it might be cheaper to freeze embryos because this is so the first most frustrating thing was that they couldn't tell me how much it costs. Still, like that's what that call was supposed to be about. And she was like, really, only the doctor can tell you. And then the doctor can't tell you how much of the medications cost, which the medications are a huge cost, like out of pocket, there's six thousand dollars. So I don't know, what do you.

Think about that?

I mean, it's kind of a lot to kind of have to make a decision on, isn't it.

It's all.

All slightly terrifying. Yeah, especially given that you know we're we're not even in the same place.

Maybe maybe you would be by that, I would hope. So I don't know, what do you think, Like, do you want to have children together?

Can? Yeah? It's I mean, I like, at some point down the line, but I realized that, like time isn't on our side with that.

But it is on our side if we do this.

Yeah, eat, it buys, it buys like more, maybe it maybe buys a windows.

It buys better odds, you know, but again, no guarantees. Yeah, this was definitely one of the most awkward moments in our relationship. I still can't believe he let me tape it.

So this is just like a lot of it's a lot to take in.

I mean, I'm like, how do we even decide? I turned off the recorder for Stu to tell me how he was really feeling. To my relief, he was in. So there, I was diving headfirst into something I wasn't even sure I was sold on. Now I needed to figure out where we were going to freeze these embryos, and that decision, well, it turned out to be almost as scary as figuring out whether to freeze in the first place.

The issue of fertility misconduct, injuries, mishaps at fertility clinics and you know, almost always in the labs of fertility clinics, is a much larger issue than any of us knows, including myself.

You have all these sacuity feelings, and so it's a kind of psychological manoeuvery.

That's next time on Misconception. This series was written and reported by me Christen V. Brown. It was produced by Jilda Decarly and Stacy Wong, and edited by Cynthia Koons. Additional research was done by Tana's mcjohnny. It was engineered by Blake Maples. Our theme music was composed and performed by Hannes Brown. Special thanks to Shelly Banjo, Randy Shapiro, Anna Maazarakis, Jeff Grocott, Lauras Alenko, and Creighton Harrison. Sage Bauman is Bloomberg's head of podcasts. Thanks for listening. If you want to binge the whole series early, go to Bloomberg dot com and hit subscribe. Then connect your Bloomberg dot Com subscription to Apple Podcasts, or listen as we release a new episode each week. See you next time.

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