By Bridget Kelly, Bhakthi Sahgal, and Ornsiree Junchaya
What’s more distressing: a cancer diagnosis or grappling with the devastating infertility resulting from the treatment? For many, it’s the fertility loss. Thankfully, newly diagnosed cancer patients in Alabama are still able to access fertility preservation services after Gov. Kay Ivey signed a bill last month protecting IVF providers in response to the state’s Supreme Court decision that granted legal personhood to frozen embryos. While many now can breathe a sigh of relief, it doesn’t do much to reduce the pressure of a hostile reproductive landscape crafted by lawmakers politicizing a basic human right.
For cancer patients who rely on IVF around the country, it’s nearly impossible to navigate through a minefield of restrictive policies while shouldering a cancer diagnosis. While Alabama IVF clinics announced they will resume procedures in light of the new law that was passed, the Court’s decision has galvanized other states to follow suit with restrictive measures. Legislation has been introduced in 14 states to curb access, with Georgia, Alabama, and Missouri enacting legislation that endangers fertility services.
These policies are positioned to delay critical care for patients who often have days to decide whether or not to pursue fertility preservation before initiating cancer treatment. The American Cancer Society expects more than 2 million new cancer diagnoses in the U.S. this year. As medical advancements continue to improve survivorship rates, the parallel rise in early-onset cancers among individuals of reproductive age amplifies the urgent need for access to fertility care. However, with a lack of federal protections for this vital cancer-related treatment, state legislatures are encroaching upon patients’ rights to make informed decisions about their survivorship.
Seventy-five percent of young cancer survivors who have never had children desire building a family. Oncofertility, the preservation of fertility before cancer treatment, is not just a medical necessity; it’s a fundamental right. The American Society of Clinical Oncology and others recommend oncologists address the risk of infertility and discuss preservation options with their patients. Not only is this conversation in accordance with the principles of reproductive rights and informed consent, it is also associated with better coping of cancer and improved quality of life among young patients.
Cancer patients’ ability to determine the number, timing, and spacing of future children isn’t just affected by these policies, although it certainly doesn’t help. Oncofertility, like other fertility care, is already out of reach for most. According to the CDC, the use of assisted reproductive technology (ART), like IVF, has more than doubled over the past decade. Nearly 100,000 babies are born every year in the U.S. via ART procedures. Yet, access to and availability of these services does not match the demand, with only 1,700 reproductive endocrinologists serving patients across 450 fertility clinics. This gap in access worsens existing health care disparities–where you live often determines your access to and knowledge of fertility preservation options. And then, there is the price of fertility preservation. Costing upwards of $30,000 per IVF cycle and usually paid for out-of-pocket, fertility care is just not an option for many, particularly for those already facing the burden of cancer-related expenses.
Currently, 21 states and D.C. have passed fertility insurance coverage laws, with 17 of those states mandating coverage of fertility preservation for infertility caused by cancer treatments. However, most of these laws only apply to certain insurers, for certain treatments, and for certain patients. This creates major gaps in financial coverage for necessary cancer-related care. And even for those who have insurance coverage, the cost of medication and cryopreservation can still be prohibitive. Moreso, Medicaid coverage is rare, having a disproportionate impact on people with low incomes and people of color. Only a handful of states require coverage for infertility diagnostic services, with New York and D.C. covering limited rounds of medication treatment.
It is crucial that Congress steps up bipartisan support for the Access to Infertility Treatment and Care Act, requiring all health plans, including Medicaid, to cover infertility treatment. Furthermore, the Access to Family Building Act creates federal protections for IVF access nationwide, and the Comprehensive Cancer Survivorship Act ensures Medicaid coverage of fertility preservation for individuals diagnosed with cancer. Congress should pass these bills with urgency to ensure people newly diagnosed with cancer everywhere have the access they need to comprehensive cancer and reproductive care.
A cancer diagnosis comes with plenty of life-altering and emotional choices. Patients wrestling with the dual weight of cancer treatment and fertility loss needn’t be further bogged down by political debate. Every cancer patient deserves the opportunity to shape their own future, unencumbered by ideological views and systemic barriers. The essence of cancer survivorship lies not just in overcoming the disease, but in empowering individuals to make choices that align with their deepest desires and aspirations.
Bridget Kelly, Bhakthi Sahgal, and Ornsiree Junchaya are Doctor of Public Health students at the Milken Institute School of Public Health at the George Washington University researching the intersection of cancer care and reproductive rights.