For this survivor, the push to cover cancer patients' fertility treatments is personal

More young people today are being diagnosed with cancer.

And that means more cancer patients are learning that their cancer treatments could leave them childless in the future. Radiation and chemotherapy can cause infertility.

For Katie Asher, the news was an added shock on top of the fact that she learned she had breast cancer at age 27. And treatments to protect your fertility can be expensive.

Asher is a physical therapist at Barrow Neurological Institute in Phoenix, and she testified before the state Legislature recently in support of a new bill that would require insurers to cover fertility treatments for cancer patients in a situation like this.

“When you're diagnosed with cancer, you don't have the luxury of time,” she said. “I was still trying to process the shock of hearing the word ‘cancer.’ I felt scared, overwhelmed, and like the future I had imagined for myself was being ripped away. And suddenly, on top of all of that, I had to make a rush decision about my future family.

“As someone who works in healthcare, I see every day that survival is not the only goal. We want patients to live full, meaningful lives after treatment. And that includes the possibility of building a family one day. No one fighting for their life should also have to worry about whether they can afford to preserve their family in the future.”

The Show spoke with Asher more about it.

Full conversation

LAUREN GILGER: I want to begin for our listeners, Katie, with your story. I mean, you were diagnosed with breast cancer at a very young age. Tell us first just about that initial shock, like, I don’t think any 27-year-old is expecting that diagnosis.

KATIE ASHER: Not at all. When I first felt the lump myself, I went to my doctor in November the year before. And my doctor just thought it was like dense breast tissue, said we would watch it. And then I had a couple conversations with some of my classmates from physical therapy school who actually had biopsies of their own breasts after feeling a lump, and all of theirs came back benign.

So when I felt mine, I didn’t even tell my mom about it until the night before, and luckily she ended up coming to my appointment with me. But I went in for an ultrasound, which immediately turned into a mammogram, and they had an opening for a biopsy later that day. So I actually got all the testing done the same day, and then I got my results at 5:20 p.m. the next day.

So it happened really, really quickly and it was definitely an immediate shock. I really was expecting to be just like my other friends where it was nothing. And I took the next day off of work, and we called a bunch of surgeons. I had an appointment the day after that where everything was set into motion.

After that, the path for me was chemo, especially being so young. So I had the most aggressive form of chemo. But before even starting chemo, my oncologist made it a point to make it be known that doing chemo can cause infertility. So while I still had my drains in from my double mastectomy, I was going through the egg freezing process, which was very interesting.

GILGER: Wow. OK, so you’re still recovering from this massive surgery, kind of reeling from the shock of even being diagnosed with cancer at such a young age. And then you have to make this big decision about your future fertility. Like had you ever thought about whether or not you wanted kids? Was this part of your plan?

ASHER: I knew I always wanted kids, yeah, but I never thought that having to freeze my eggs was something that would be in my future. It was a huge shock to not only have to figure out, like physically, there are so many changes after having that surgery. And then to have to be like, OK, now I have to start doing shots for myself. And I knew that I would want the option to have kids in the future.

And looking at the price tag, it was really, really staggering. But my parents were there the whole time and ensured that whatever it took, that they would be there to support me financially through that.

And then luckily the clinic that I went to has an oncology program too. So they were able to subsidize the medications too. So that was a huge deal.

GILGER: Wow. Yeah. OK, so you got some help in paying for this, but not everyone is going to be in that situation. How much can it cost? I mean, like you said, this is kind of an extensive process to go through fertility treatments to then extract and freeze your eggs, but it’s also a really expensive one.

ASHER: Very expensive, yeah. Our total cost out of pocket with the subsidized medications was still $6,000. But with the medications, I’ve heard coworkers talk that it can be up to $20,000 to do the entire process.

You’re going in for ultrasounds and blood work almost every single day, so they can track your hormones so they know when the retrieval has to happen. And there’s a lot of monitoring appointments within that.

So it’s a very expensive process. And then in addition to that, every year it’s $625 to maintain the storage.

So for me, I had purchased a home just six months before that, so all my money that I had saved pretty much I had reinvested into a home because at 27 years old, I didn’t think that I would have to save all this for a medical reason. There’s no way I would have been able to cover that any other way.

Katie Asher

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Handout

GILGER: So now you’re advocating for this particular bill at the Arizona state Legislature. You’re doing work with this organization, the Chick Mission, this national nonprofit that is working to pass policies just like these. And it sounds like it’s because this is more common than people might think. The rate of cancer in young people is rising, right?

ASHER: Correct. Yeah. And a lot of research is going into the why behind that. But it is pretty staggering to look at the numbers of how many people between the ages of, of 25 and 35 or 40 that are being diagnosed.

And normal screening doesn’t happen until 40 anyway. So a lot of times people are getting diagnosed at much later stages than they would if they were older, because it’s caught earlier if you’re doing regular screenings.

So not only is the rate of young people getting diagnosed is going up, but also the severity and how aggressive the tumor is at the time of diagnosis for young women.

GILGER: So it sounds like other states are passing bills like this successfully. And I wonder, is it the case that doctors often or always let patients know that this might be a problem? That, like your doctor did, will say, “By the way, as we’re dealing with this cancer treatment and you need to go through chemotherapy, you also should keep in mind that you might not be able to have kids one day because of it”?

ASHER: I was very, very fortunate to have an oncologist that prioritized that, because the more stories that I hear of young women that are getting diagnosed is that their doctors aren’t even mentioning it.

I’ve heard other stories, too, of young men who are diagnosed with testicular cancer, who are never told that they would have to freeze their sperm in order to have kids in the future. So they end up going through surgery and then that option is gone.

So I don’t know what work is being done on the oncology side of things to have these conversations with people. But that’s another branch that Chick Mission focuses on is education. So making sure young women know that this is something to advocate for in the future if this does happen.

GILGER: Yeah, yeah. This is a bill that puts the onus of the payment on the insurance companies. Have you gotten pushback from insurance companies from that industry about having to pay for this?

ASHER: Yeah, I can touch on in Arizona. I don’t know nationally what the response has been, but from speaking with the lobbyists that we’ve been working with here, as the bill was being drafted, we did have individual meetings with the major insurance providers in Arizona.

And the biggest pushback was mostly the requirement for insurance companies to cover the storage part of that for three years after the initial cycle. So we changed the verbiage of the bill to be three plan years. That was big for the insurance companies.

And then we were really advocating for that three-year mark just because at one year, which is what they were also wanting, one year post all of this. As a cancer survivor, you’re still reeling in “What does my life look like now post-cancer?” So being able to have that three-year wiggle room to be able to get back on your feet emotionally, physically, financially is a really important aspect of this bill as well.

GILGER: Yeah. So you are cancer free now, is that right?

ASHER: I am, yes. We do monitoring appointments every three months through blood work, but so far so good.

GILGER: Well, congratulations.

ASHER: Thank you.

GILGER: I want to ask you lastly, Katie, about something that you said in your testimony in front of the Arizona state Legislature. You said that because you are a health care practitioner, you work in this field, and you said that survival is not the only goal. What was your goal in all of this?

ASHER: I think during it, survival for me was the only goal because I think for a lot of people who get faced with the word cancer, the thing that pops into our heads is that it could be a terminal diagnosis, and there’s so much uncertainty.

So in the thick of it, it was survival. But I think now especially that I’m three years post, I’m seeing that getting back into what my new normal is and finding purpose and passion and being able to be a voice for people in the future who will face the same thing — it really expands your horizons and makes you think about what’s really important in life.