It has been quite some time since I've done any writing and I'm back with a favor to ask of all who know my story or know someone who has struggled with infertility.
This Friday, January 15, The Employee Benefits Programs Committee (EBPC) will decide whether an IVF and fertility preservation bill, HB 1147, will advance in the 2021 North Dakota Legislative Assembly. If this bill passes, women who are diagnosed with cancer will have insurance coverage for fertility preservation, something that Nate and I were denied after my diagnosis five years ago.
I have been asked to write a testimonial to present to the committee. which I have shared below. In addition to the testimonials of women who know first-hand the importance of this bill, anyone who cares about this cause can help us move this bill along and bring it to fruition for women and families in the future by simply clicking THIS LINK and filling out the form to send an email to your elected officials. It takes under two minutes of your time.
Please consider helping!
It’s surprising how much your arms can ache to hold your baby that doesn’t even exist. It’s torturous how infertility consumes you, on and off all day, every single day.
Not even two weeks after my husband and I got married, and at 32 years old, I was diagnosed with stage 2b triple-positive invasive ductal carcinoma. Instead of a honeymoon, we were looking at chemotherapy, surgery, radiation, and years of hormone-blocking therapy. Thus, the plans we had for our newlywed years, which was starting a family, were quickly replaced with the plan to simply stay alive.
Women under 40 can and do get breast cancer; chemo and radiation can and do cause damage to fertility. Modern medicine has made it possible for cancer survivors to go on to live long, healthy lives, but what happens when the life you are left with after cancer is nothing resembling the life you had planned? Survivorship is a necessary part of cancer care and fertility preservation before treatment needs to be at the forefront for patients who want a family.
Insurance denied our claim for embryo preservation before beginning treatment, despite the fact that I had fertility benefits through my employer, claiming it was “medically unnecessary” because I did not meet their criteria of trying to conceive unsuccessfully for two years in order to be considered infertile. Any oncologist will affirm that infertility or fertility complications are a frequent result of cancer treatments. Insurance is defined as “a thing providing protection against a possible eventuality." What else is infertility as a result of cancer treatments if not a possible eventuality of those treatments? Where is the protection provided to cancer patients for this possible eventuality?
Fertility preservation must be honored in the same regard as any other part of cancer care and insurance coverage must be standard.
Fortunately, my husband and I were able to do embryo preservation before I began chemotherapy, but only because family, friends, acquaintances, and even complete strangers rallied together and in less than 24 hours raised money for us to cover the cost. Not everyone is as fortunate. Crowdfunding should not be the expected or accepted financial plan for any medical expenses. Cancer patients and survivors will always have enough of a financial burden with the years of treatments, routine tests, medicines, therapies, and other expenses. Costs for fertility preservation and fertility treatments just add a cruel and unnecessary burden.
Two years after my diagnosis, my oncologist gave me her blessing to pause my hormone-blocking therapy to try and start our family and take part in a clinical trial that seeks to prove whether or not pausing hormone-blocking therapy to get pregnancy increases a woman’s risk of recurrence of hormone positive breast cancer. We tried to conceive with the help of fertility treatments and wait to use the two embryos we had. For over a year, I felt like more of a lab rat than I did throughout all of my cancer treatment. At every visit where we tried something new, I was met with the same apologetic expression of pity from my fertility doctor saying my body wasn’t responding. My ovaries appeared atrophied, my uterine lining was too thin to support a pregnancy, and my menstrual cycles had completely stopped since starting chemo. Attempting everything possible to get your body to perform its most biological function after beating cancer is a real slap in the face of your survival. You don’t feel like you have survived. You feel like you have died.
Finally, after getting a second opinion with a fertility specialist at Mayo Clinic, we tried a more aggressive plan and my body’s response was sufficient for a transfer of one of our two embryos. Against all odds, it resulted in our perfect, strong, healthy daughter, Lola, who is now 21 months old and the center of our universe. It’s impossible to imagine our life without her, but I cannot forget that she would not be here without the egg retrieval that happened just two days before I had my first chemotherapy infusion and that we couldn’t afford on our own.
Fertility preservation matters. Insurance coverage of fertility preservation matters. Fertility preservation provides hope and insurance before, during, and after cancer. There is so much at stake for a cancer patient who hasn’t started a family before cancer strikes. A cancer diagnosis is devastating enough. Knowing that the treatment might leave you infertile is heartbreaking. Not being able to do fertility preservation before beginning cancer treatment because it is not covered by insurance and too expensive simply should not happen to anyone. Fertility preservation must no longer be viewed as elective. It is medically necessary.