This Sunday, June 4th is National Cancer Survivors Day. It is a day to celebrate those who have survived a cancer diagnosis, a show of support for people affected by cancer, and hopefully, an inspiration to those who have been recently diagnosed.
In the past few weeks, as both a New Yorker and a fertility advocate, I’ve been learning more and more about The Fair Access to Fertility Treatment Act (FAFTA). This act hopes to add IVF and fertility preservation to New York’s infertility insurance law. In the spirit of National Cancer Survivors Day, I’d like to focus for a minute on the fertility preservation portion because the more I learn about the lack of access cancer patients have to fertility preservation, the angrier I get.
I was ignorant and thought that if you were diagnosed with cancer, male or female, insurance covers fertility preservation. Maybe you thought this as well. This basically means that before you undergo treatment to deal with your cancer, you can freeze your sperm, eggs or embryos. As I’ve been learning though, this isn’t true at all. In fact, according to Joyce Reinecke, Executive Director of the Alliance for Fertility Preservation, the only state that requires insurers to provide fertility preservation coverage for cancer patients is Connecticut and that just passed on Friday, June 2nd of this week.
Even if you are diagnosed with cancer, you’re technically NOT diagnosed with fertility issues so an insurance’s logic seems to be, “You’ve got cancer. Not infertility. So sorry and good luck!” (Of course, I’m paraphrasing). Other insurances won’t cover it because, technically, you haven’t been trying to conceive for over a year or you aren’t following their recommended protocol of trying insemination first. Mind you – these things have zero to do with a cancer diagnosis as again, it’s not that you’re infertile. It’s that your cancer may affect the ability to have children in some capacity but at present, there is little support of that.
What was even more shocking to me is I learned from Joanne Kelvin, Fertility Nurse Specialist from Sloan Kettering, that cancer patients sometimes only have mere days to come up with anywhere from $1000 to $10,000 should they want to preserve their fertility before undergoing any kind of life saving treatment.
Vedana Vaidhyanathan, a cancer survivor said this was exactly what happened in her case. “When my husband and I found that my cancer was back and we were told we had to do IVF to save my fertility. I was evaluated and then told how much it would cost. My husband is a teacher and I am an unemployed librarian, so hearing $10,000 was heart breaking and insurance would not cover it. So, we turned to a Gofundme page. We are still raising money there to help with my medical bills.”
When speaking to Kate Montgomery, a cancer survivor, about the costs, she says, “Financially, it sucks, all of it. Infertility treatment; cancer treatment – trying to pay for them both intertwined, let me tell you, is no picnic.”
Kelvin also shared that there have been several occasions where she’s seen patients either choose less effective cancer treatments to spare their fertility or delay or interrupt their cancer treatment to try to get pregnant.
A patient I spoke to, who asked to be referred to as Rebecca R. did exactly that – delayed treatment. “I was aware that stopping chemotherapy treatment for the months during which I did IVF cycles would carry additional health risks. I consulted with several oncologists and specialists before making this decision. I ended up doing several IVF cycles in a row, which was not normally recommended from a fertility perspective, but I decided to do so to minimize the amount of time that I would need to be off of my chemo medications. The process was difficult and when all was said and done, I completed 9 IVF cycles and retrievals in order to freeze viable embryos. My partner and I then used a surrogate (gestational carrier) to carry our embryos through birth.”
Jeannine Canino Bieda, a breast cancer survivor, has heard of this as well. “A lot of women will put off treatment to have a child and then sometimes a stage 2 ends up being a stage 3 or 4 because of that extremely hard decision. Personally, I think if fertility preservation were an option, an attainable option that is; it would take a lot of pressure off of the cancer patient.”
Imagine that for a second. Because a patient doesn’t have access to freezing sperm, eggs or embryos, they are willing to impact the recommended medical care they require to ensure they have a family. As if having a cancer diagnosis isn’t difficult enough.
It's also important to note that sometimes, in the case of a cancer diagnosis, even if it’s not the cancer or even the treatment that directly impacts your fertility, some doctors recommend, in the case of women, you don’t get pregnant for a period of time. For women, waiting until it’s “safe” means a decline in egg quality. So basically, if the cancer doesn’t affect your fertility, the years that pass will.
Montgomery, for these reasons, says you need to be as proactive as possible. “I think it's important to be made aware of your options, because time is not on your side. You can't go back after certain treatment options, which means if you don't think ahead, you have no way to plan. A cancer diagnosis dramatically alters the course of your life; your career plans your family plans, your financial landscape. Having the information to decide what you want to do about your fertility, or your family building situation is just as important as deciding how you'll take time off of work for radiation or whatever, if not more so.” She added something that I personally never considered that I consider powerful insight. She said, “I think some doctors expect the desire to fight cancer to be the strongest desire. My desire to have a child was just as strong, if not stronger than my desire to get well. And I especially didn't like how I was shamed for that.”
Rebecca R. adds, “Receiving a malignancy diagnosis (a rare blood cancer) was a painful and difficult life change to accept and to deal with. As a woman in her mid-thirties who was planning to start a family, it felt like a “double-whammy” to also then have to call into question whether I would be able to have biological children. We are so lucky to live in a time where reproductive medicine is sophisticated enough to support many patients who are in this difficult and doubly-painful situation, and it is my belief that access to this technology should be available to all cancer patients.”
In Bieda’s case, when her doctor asked if she wanted to have children sometime in the future, her and her husband decided quickly to proceed with a round of IVF before starting cancer treatment. They have six frozen embryos which at least provides some options. When I asked her why she felt cancer patients should have access to fertility treatment, she answered, “So much is taken away from us when we are diagnosed. Fertility preservation is something we can control during this uncontrollable time. It's an option that we should all be given. Not everyone will take that option, but nonetheless, I want to make the decision whether I want kids. I refuse to let cancer make that decision. “
Overall, the more people I talk to about this, the recurring theme seems to be that the overall public and even some of the medical community seem to dismiss the real concern and worry that exists about having children, even in the face of a cancer diagnosis. Yes, the C-word is very scary but as I’m learning, it doesn’t trump or replace the need to also want to have children about this lifelong impact.
Also, an interesting point to me is something Reinecke said during our conversation. She said that at times, the problem is “structural”. Meaning, oncologists often don’t have a reproductive endocrinologist in house, so you’re asking them to think beyond their specialty, and to send their patients outside the walls of their hospital. Also, at present, many consent forms related to cancer don’t include anything on fertility at least not in clear, non-medical terms that make patients understand that they might not be able to have kids in the future.. It’s like doctors are swimming in their own lanes, which is understandable, but if you consider how much cancer can impact family building, you’d think there would be more efforts made to increase communication.
The Fair Access to Fertility Treatment Act (FAFTA) (New York Bill Number S 3148 and A 02646) was introduced on January 20th, 2017 and aims to expand the current infertility insurance mandate in New York state to include fertility preservation for cancer patients. If you want to help support this, you can join the “Pass the Fair Access to Fertility Treatment Act” Facebook page, call and send letters to your State Senator and Assembly member by using Resolve, the National Infertility Associations tool kit by clicking HERE.
For now, I asked each patient what advice they would give someone in newly in their situation. Vaidhyanathan says, “The advice I would give to new cancer patients is get at least a second opinion.”
Bieda offers a very thoughtful, “Surround yourself with good supportive people. Pick your tribe wisely. These are the people you will have to count on when you can't get out of bed, or you need someone to just listen.”
“My advice would be to really take the time to decide what's right for you.” Montgomery wisely states. “Some cancer patients only have days to make decisions. I get that and there are so many decisions to make. Sometimes, it's easy to think that fertility isn't as important because it's not life-threatening like the cancer is. However, hopefully years later, your cancer is in the past, but it's effects still linger on, and that sometimes is when the grief of infertility kicks in. Long after your hair has grown back, when your medical bills are almost paid, will you regret not freezing eggs or embryos?”
Rebecca R. adds, “I never thought that I would be diagnosed with cancer at age 36. I never thought that I wouldn’t be able to become pregnant. But although there were what felt like an inordinate amount of bumps in the road, I am now the parent of 7-month-old healthy twins. Perseverance was key, as was the willingness to think outside the box for creative and non-traditional options.”
I’m hoping that the options Rebecca speaks of can be made available through the passing of FAFTA. For now, again, in honor of National Cancer Survivor’s day, I want to thank each of these women for sharing their stories with me (and now, you!) and raising awareness about this very important issue.