“You will never be a mom.”
These were not the words that were said, of course, but these were the words I heard.
It was 1998, a lifetime ago, and still the shock reverberates through my body. My moderately charmed, mostly on-track life was in free fall from my cancer diagnosis. I had been in the hospital more than a week at this point, and day after day fresh indignities had been raining down: an NG tube aggressively forced into my one-size-too-small nostril; a debate about “coffee grounds” in my stomach; whispers and eyes circling around me; machines and hands, scanning, poking, prodding everywhere; discussions, diagrams, articles, odds, all laid out as family and friends and kind-eyed residents came and went, with me, the specimen, laid out prone and powerless.
By the time this stinging message was delivered, the cutting was done, the tubes removed, the bodily functions precariously restored. The healing had begun. But before I would be released back into the world, one more fee would be extracted, one more blow landed: “you know that the chemotherapy might leave you infertile, right?” No. No, I didn’t know that. I didn’t know this “medicine” was a poison that would target every cell in my body indiscriminately. No, I didn’t know that losing my future children might be the price I would have to pay for surviving. A trade of sorts — those ethereal, chubby, imagined, dimpled lives the toll for mine.
For me, however, the loss was narrowly averted. No one had been officially dispatched to my bedside, clipboard in hand, to warn me — it was only the concern of a conscientious fellow that delivered this gift to me. So, while the transfusions had stabilized me, and the surgery had saved me, the fertility threat had spurred me to action. I was determined to salvage what I could of my on-loan future. Embryo freezing, which would require a source of sperm, about five to six weeks of shots and procedures, and $10,000 cash up front was the only option. Luckily, I was married, needed time to heal from surgery before beginning chemotherapy, and, perhaps most critically, was able to pull together financial resources quickly enough to make it happen.
My story is far from unique: each year in the U.S. about 140,000 people under the age of 45 hear that most dreaded utterance, “you have cancer.” Thankfully, about 85% of these patients will go on to survive their cancer, but many must sacrifice a fundamental, cherished aspect of life — parenthood. Chemotherapy, radiation, and surgery — alone or in combination — can cause damage to the reproductive system, resulting in infertility or sterility. This damage is irreversible — women cannot grow new eggs, and men cannot resume sperm production if their sperm-generating cells are destroyed. Removing gametes from the body to protect them from this damage is the only means to ensure their survival. Methods to do this include long-standing procedures such as sperm banking and embryo freezing, and newer options like egg freezing and ovarian tissue freezing.
In the 20 years since I was diagnosed, much has improved for cancer patients facing treatment-induced infertility. In addition to technical advancements that have made fertility preservation more efficient and applicable to a wider population of candidates, such as pre-pubertal girls, incorporation of fertility preservation into clinical practice has occurred. Professional societies including the American Society of Clinical Oncology, American Society for Reproductive Medicine, and American Medical Association have issued guidelines on the topic and recognized it as a standard part of cancer care. An entire body of academic research has been developed, and many leading cancer centers have implemented fertility preservation programs. Charitable organizations have been created to provide support and financial assistance. Infertility is now understood to be a likely side effect of many cancer treatments, and a consequence worthy of intervention. In short, it has earned its place on the “checklist.”
After all these years, however, one thing remains: a dearth of insurance coverage. Access is still dependent on a patient’s financial status and the ability to pay out-of-pocket for these services. Because cancer is unforeseeable and preservation must be accomplished urgently — usually in a matter of days, or, at most a few weeks — it is simply unaffordable for many patients.
In the absence of coverage, charitable organizations have provided valuable, in fact, life-changing, financial assistance to many. These donations and discounts, however, can only help an individual — they cannot fix the problem for the next patient who is diagnosed must begin scrambling for funds again. These grants do not create systemic change. Beyond delivering an immediate financial benefit for patients, insurance coverage for fertility preservation would validate the service itself. It would allow clinicians to more robustly explore and present options to patients, without the constraints of a “wallet biopsy,” dampening preservation discussions with those perceived unable to afford it. And it would indicate to patients that this is a standard, reasonable, and recognized intervention that you should consider if you value future parenthood.
In the past few years, a trend toward insurance coverage for these services has emerged. Since 2017, eleven states have enacted measures to require insurers to cover these medically necessary services. Recently, the federal Office of Personnel Management also added this coverage for 9 million federal employees. However, even where coverage has been established, significant gaps remain. Most glaringly, only two states, Utah and Illinois, have backed this coverage for their neediest citizens — those on Medicaid.
I am sharing my story because I have the privilege, and therefore, the obligation, to do so. I survived. My embryo freezing procedure was successful, and I have twin daughters who will graduate college soon and embark on the world with all the shiny invincibility that I had before I entered the cancer-sphere. My life was, mostly, put back on track, and I am forever grateful for the world-class care that I received for both my oncology and fertility needs. But so many were deprived of these choices, these chances. For most cancer survivors, future parenthood is elusive, mediated not by medical limitations or biological realities, but instead by financial status. Until we decide that the ability to have children — or at least the protection from involuntary sterility — is a right and not a privilege, we will continue to do harm to young people who suffer the misfortune of a cancer diagnosis, especially those who are most vulnerable and least able to advocate for themselves.
Joyce Reinecke, JD, is the executive director of the Alliance for Fertility Preservation, a nonprofit working to increase information, resources, and access to fertility preservation for those facing a medical risk to future parenthood.
Last Updated June 24, 2021