Infertility treatment’s hidden costs [PODCAST]

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“Looking to the future, since I only froze one embryo and my ovary reserve is diminishing, we are hoping to go through another infertility treatment cycle. Although, once again, the medications are once again being denied.

Infertility is just like any other mental or physical health condition and should be fully covered, including pharmaceutical, medical, and surgical treatment. As data suggests, 1 in 4 female physicians will experience infertility, which is twice the general population’s rate, which is 1 in 8 women. The reasons for the increase in infertility include significant stress levels during the education and profession, deferred family planning, and long hours of medical careers. Like myself, Black and Latinx women have higher risks of experiencing infertility, not explained by biological differences but by social inequalities and disparities in health.”

Stephanie E. Moss is a medical student.

She shares her story and discusses her KevinMD article, “The hidden costs of fully covered infertility treatment.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today we welcome back on the show Stephanie Moss. She’s a medical student, and she wrote the KevinMD article “The hidden costs of fully covered infertility treatment.” Stephanie, welcome back to the show.

Stephanie E. Moss: Thank you so much for having me.

Kevin Pho: So for those who didn’t get a chance to listen to our first episode together, just briefly share your story and journey to where you are today.

Stephanie E. Moss: Yeah, sure. So the first time I wrote for KevinMD, I was talking a lot about failing my Step 1 exam, which was very heartbreaking, but it opened my eyes to the possibilities of the disabilities world and how individuals in medicine are rarely seen as able to have disabilities, mental or physical. So once I failed that exam, I actually ended up going to the disabilities office, where I was able to get accommodations, which helped my future exam for Step 1 and also my future accommodations in my clinicals.

Kevin Pho: Now, since you wrote that article and appeared on my podcast, what has the response been? What was your journey since then?

Stephanie E. Moss: Oh, it’s been amazing. I’ve received so many amazing comments and personal messages from individuals across the country who have really either experienced it themselves, where they failed an exam, didn’t know what to do, and didn’t even know that the disabilities office was even an option for them. Some individuals had before received accommodations for their MCAT exam or in college, but then when they submitted it to NBME, they got denied, whether because their mental or physical diagnosis wasn’t enough for the NBME to qualify for accommodations. It’s been really interesting, and it’s started to kind of develop a group of advocacy students and physicians who have started to realize that this is a problem in medicine and start talking about it more, sharing those experiences.

Kevin Pho: Well, that’s wonderful to hear. So today we’re here to talk about your latest KevinMD article. This was published back in April. It’s titled “The hidden costs of fully covered infertility treatment.” Now, for those of you who get a chance to read your article, just walk my audience through it and share the story of why you decided to write it.

Stephanie E. Moss: Yeah. So it was during my second year of medical school that I actually went through an endometriosis surgery, where we didn’t know if we had endometriosis, but I had all the symptoms. So I went through and got a physician, a surgeon, and we went through the da Vinci surgery, where it was minimally invasive, and they determined that my fallopian tubes were clogged. So if I ever wanted to have children in the future, I would have to go through some sort of infertility treatment.

That’s where I really started to think, “Huh.” I hadn’t really thought about my fertility up to this point. You know, I had just been going through medicine. My husband and I had talked about having kids maybe after residency, but all of a sudden, I was put in a position where I had to figure out, now what are my options? Because my condition was also that I had a diminishing reserve, which is actually pretty common for individuals who don’t even have endometriosis, just in the physician world. A lot of the medical professionals, by the time you finish your training, seven, eight, 10 years, you’re like 30, 35, and by that time, just naturally, our ability to conceive does diminish as females. And so now, if you add in medical conditions like endometriosis, that jumps up even higher, the risk of infertility.

And so I ended up getting in contact with an infertility doctor and starting on the journey of, like, what does it look like to go through infertility treatment? What does it look like as a medical student, financially and emotionally? The whole experience really surprised me, and that’s why I really wanted to write the article, because I know that I am not alone in dealing with infertility. As I said, one in four female physicians have infertility, compared to one in eight in just the general population, which is pretty significant. And then in my specific health condition, endometriosis, 50 percent. That’s a pretty significant amount of individuals that are suffering from these conditions, and it’s not really talked about in society what it entails.

Kevin Pho: So go into more details. Tell us some stories. You’re a medical student, and you’re going down this pathway of infertility treatment. Can you share some stories that can illustrate that intersection?

Stephanie E. Moss: Yeah. So at this point, let’s see, I think I started the journey in the spring of 2020, which is also COVID time, at the beginning of the pandemic. It’s also when I started studying for Step 1. So I have all these things going on in my academic life and also in my social life. In the midst of all that, I started the process of looking to see what infertility looked like. So I began by calling the fertility doctor that was highly recommended at my academic institution, and they were like, “OK, wait. Before we can even see you, here’s a huge long list of questions. You have to go to your health insurance and ask if they cover it, because we will not see you. We don’t want to waste your time or our time.”

So here I go, calling the health insurance, you know, like any other call to the health insurance, multiple hours of my day, and I went through each and every code they provided me: no, yes, yes, yes, no. But overall, they said, “Yes, it is pretty much fully covered. You are very lucky.” I remember that both the person on the other side of the phone for the health insurance, and then also, when I went into the fertility doctor, all the nurses and the providers were like, “Oh my God, you’re covered. That’s a huge deal. Rarely can we get that for normal people. You’re a medical student.” So already I felt really confident and excited, like, “Yeah, let’s do this.”

That’s where the journey started of, OK, now that we want to do this, the first step is a test for hormones. I did so many blood tests. I feel like they tested for everything. Once they determined where my hormones were at, they were like, “Yes, it sounds good, but let’s go through a follicle stimulation,” where they would give me hormones to try to make my ovaries as big as possible and produce as many follicles. They would then remove them, and then I could decide to use some of them or freeze them.

This is where the interesting conversation came for a lot of people that I talked to, because normally when people go through this, they do it as an immediate situation. They remove the eggs, and they put it right in their body. However, I had a unique situation where I didn’t want to get pregnant right now. I wanted to stay as a medical school student. I had my Step exam. I had at least two more years in academic medicine, and then, of course, residency. So I decided, OK, I’m going to remove them, we’re going to freeze them and keep them in the freezer at some faraway institution until we were ready to go through the actual IVF process, where they would actually put them back in me.

OK, so then came the situation of getting these hormones, these injectable hormones, where I would inject myself, and they would actually stimulate these follicles. That is where I hit the biggest stopping and struggle point, because there were five medications at first that were injectable, and these were ganirelix, Follistim, Menopur, leuprolide, and Novarel. For those five injections, they kept saying they weren’t covered. At this point, they had told us treatment, and this is part of the treatment, was going to be covered. So this is where we went back and forth between multiple different pharmacies. Some pharmacies wouldn’t even want to touch these medications, because they just don’t do infertility; that was too much. So they had special pharmacies that I went to that were just for infertility. They were called specialty pharmacies. Even when I went to the specialty pharmacies, after they added it up, they were like, “OK, it’s going to be $10,000 for these five drugs.” And I was like, “Wait, I thought my insurance was going to cover it.” And they’re like, “No, it’s being denied. This is pretty typical.”

So that’s where I started to do more research, go back and forth and back and forth. One representative says they were covered. As I started to go into more of my Step prep, I just put it on hold. I was like, “Insurance, you deal with it.” I put in a pre-authorization, and then I just waited. Let’s see. And I guess yes, and then they were denied once. But then, really interesting, out of the blue, after I took my first Step exam, the one that I later failed, I got a call from my caseworkers saying, “I got them covered.” This was amazing. $10,000 would only go down to like $300 for the copay. So obviously, super excited, I was like, “Yes, get them shipped.”

Now, I do want to mention why the insurance was saying they were not covered. They were saying that since they were an injectable medication, they were not covered under a pharmaceutical benefit. The reason for this is, usually with injectables, they expect only a physician or a health professional in the office, so the pharmacy was able to send it to the office, and then me go in. But that wasn’t really feasible if I had to do these injections multiple times a day. And of course, my fertility office didn’t want to do that. They didn’t have the time for that either. But they possibly were covered under my medical pharmaceutical benefits. And so that’s how we ended up getting them covered: not under pharmacy, under medical benefits. Because I had endometriosis, I was using infertility as a fertility treatment for my medical condition. That’s how we got it. But as I’ve tried to do it now a second time, later, it’s not working. So this has been a very interesting journey to understand what it takes to get these medications.

Kevin Pho: So that’s quite a story. I think that you clearly went through a lot of back and forth. It sounds like the first time you had it covered, and you’re having trouble the second time. It almost seems like there’s an element of randomness to it. Always, it seems like there’s no real rhyme or reason to what they approve. Would you say, just talking to other people in your similar situation, that what you described is a fairly typical experience when it comes to trying to get infertility injectables approved?

Stephanie E. Moss: Oh, yes, especially as I started talking to more individuals who experience infertility. It is just an expectation in the infertility world that people shell out 10, 30, 40, $50,000, and automatically that is a huge barrier, a financial barrier, an education barrier, and a time barrier, for individuals to do this. And fortunately, this is where a lot of the advocacy has now come on, through the American Medical Women’s Association and actually an organization called RESOLVE, where they’re actually working with individuals with infertility to actually go to the health insurances and say, “This is a problem. These individuals need to get this treatment.” They cannot just shell out money if they’re already paying for their insurance. Insurance says it’s going to cover it, but you can’t say, “Oh, for these people you cover it, for these people you don’t,” without any rhyme or reason.

It was interesting. As I tried to get the second round of infertility treatment medication, I actually sent an email similar to the KevinMD article. I actually sent the letter to my academic institution’s financial aid office and the health insurance company, kind of telling my story. I actually got a really interesting response from one of the health insurance student advocates, and they’re the ones who told me, “You’re in Illinois. It’s actually a law.” And this is after, pretty much a year after I started going through this, and up to this point, never had I heard from the infertility doctor, from the insurance, from anyone, that this is actually a law in Illinois, a mandate that says that all infertility treatment, or a lot, all infertility treatment and procedures, should be fully covered by any health insurance that is provided by a work environment that has more than 25 individuals.

And this is not the only state. There are, let me see, a handful of other states that have laws that either have some sort of fertility preservation or just different additional qualifications or things to tell insurances that they need to cover it. So it is definitely really interesting and awesome that they have it, but even when I tell the insurance, there’s still a struggle. So it’s a work in progress.

Kevin Pho: So you’re telling me that after all that back and forth, and talking to your advocate, and talking to your case manager at the insurance company, and getting that first treatment approved, the second one, maybe, maybe not. I don’t even, I want to ask you: How many hours have you spent on this? And you’re a medical student studying for the Step as well. Now that you discovered there’s a law that mandates that all infertility treatments be covered, and when you tell the insurance company about this law and they’re still giving you pushback, what exactly are they saying? What are the reasons that they’re giving you pushback for?

Stephanie E. Moss: It’s the same things as last time. They’re kind of skating around. They’re saying, “We’ll look into it. Oh, give us more time. We will see.” Some representatives have said, the last representative that we had worked with said yes, but they needed the doctor to call the prescriptions in over the phone, which they had already done. So just additional barriers that we had already followed. So I’m not sure. Like I said, it’s a work in progress.

Kevin Pho: So what’s the path forward for you? Are we just kind of waiting to see what they say, continuing to go back and forth? Is that essentially what it is?

Stephanie E. Moss: Kind of. I believe the last thing I’ve done, I’ve asked my provider to recall those prescriptions in to a new specialty pharmacy that has been approved through the insurance to work with them for medical benefits, not just pharmaceutical benefits. So we’ll see. I’m still waiting to hear back from them. And then, eventually, when I do get those covered, hopefully, I’m still seeing when I can actually do it, because that is also an additional barrier and challenge. I had to take a leave of absence because of all the time, like you said, that this procedure was impacting my life, that I wasn’t able to be a medical student and just study for Step.

So now that I’m looking, I’m starting my third year of medical school, and with the knowledge that, OK, even if I do have these infertility medications, do I have a month to give away for just this procedure? They say it’s supposed to be just two to three weeks, but from my experience, it was a good month of injectables. It took me about a week of injectables just to get me out of baseline estrogen levels, and then, as I actually was doing the injections to increase the amount of follicles, that was an additional two weeks. And then it was a good couple weeks just to recover, because it was so painful. It made me just so weak, so tired.

You know, that’s why I said “fully covered.” And actually, someone reached out to me and mentioned, “Why didn’t you talk about the emotional, the physical impact of infertility?” And I want to say, yes, that does need to be stated. There is so much that infertility impacts. This was just one additional thing that I didn’t expect. I was expecting the emotional and physical struggle, but this was something that just added to the cost that I wanted to be known.

Kevin Pho: We’re talking to Stephanie Moss. She’s a medical student. She wrote the KevinMD article “The hidden costs of fully covered infertility treatment.” Stephanie, for those other medical students, residents, and physicians, for that matter, who are also going through the infertility journey, now, after you reflect on your experience thus far, any pieces of wisdom that you could share with them to make their process a little bit easier?

Stephanie E. Moss: Yeah, I say, first of all, it’s so important to go to your insurance and be very clear and write down what they say. Write down which representative you talk to. Write down what they always give you, a code. Have that in writing, of what they said was covered once you’re good to go. Also, check out your state, if there’s any mandates out there that can support you in your adventure.

We like to tell all medical students and residents that it’s important to start that conversation early, if you do have a partner, or even just with yourself, and realize that if you want to have the choice later on, you do have to start having some family planning in your life beforehand, especially as you go forward with this medical career.

Kevin Pho: And my final question: Any take-home messages that you want to leave with the KevinMD audience?

Stephanie E. Moss: I think it’s important to state that this is not a unique condition. This is very common. One in eight individuals have infertility, one in four female physicians, and this is something that needs to be talked about, and people need to become aware of it and actually fight for the rights.

Kevin Pho: Stephanie, thank you so much for sharing your story and coming back on the show.

Stephanie E. Moss: Thank you so much.

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