“Doc, I have to choose between treating my cancer or having a child.”

“I can’t afford to store my sperm long term, and I don’t know when we’ll want to have kids.”

“I wasn’t informed that treatment would affect my ability to conceive.”

These are just some of the heartbreaking statements made in clinic during conversations about fertility preservation.

What Is Fertility Preservation and Why Is It Important?

Fertility preservation involves freezing embryos, eggs, ovarian tissue, sperm, or testicular tissue for future procreation. This is particularly impactful for patients who experience iatrogenic infertility, which results from medically necessary treatments that impact fertility potential (Figure 1).

In particular, certain cancer treatments, such as chemotherapy and radiation, can be highly gonadotoxic. Approximately 10% of all cancer patients are diagnosed during their primary reproductive years between the ages of 15 and 39, and up to 90% of cancer survivors experience fertility impairment as a result of their treatment.¹ Studies show that it may take 1 to 2 years to recover to pretreatment levels, and some patients do not recover at all. Therefore, sperm banking or oocyte preservation before chemotherapy may be the best and, in some cases, only option.

However, couples face several barriers to accessing fertility preservation—most notably, cost. One study conducted at the University of Miami showed that of men who were interested in sperm cryopreservation before initiation of chemotherapy but did not proceed, 84% listed “financial reasons,” followed by 11% for “logistical reasons.”² The high financial burden was the single-largest reason couples could not proceed with fertility preservation. In the same study, cost-analysis showed that with copays, laboratory testing, initial processing fees, and storage fees, the average total cost for 5 years of sperm storage came to $2500—a financial burden many cannot afford. Oocyte preservation is even more financially demanding for women, costing anywhere from $10,000 to $15,000, with annual storage fees of $500 to $1000.³

Legislation at the State Level and Challenges in Enforcement

Senator Cory Booker introduced the Access to Infertility Treatment and Care Act in 2021 to address these barriers. This was the first attempt at the federal level to protect and provide care to patients with infertility and was estimated to cost $3.8 to $12.7 million annually. Unfortunately, the bill ultimately failed to pass. Most of the success for fertility preservation coverage thus far has come from the state level. Currently, 16 states have successfully mandated fertility preservation coverage as seen in the coverage map by the Alliance for Fertility Preservation (Figure 2). Several more states have active and inactive legislation in place, representing potential opportunities at hand.

Legislative processes are complex, and with so many factors at play, there can often be confusion as to what the policy entails, who is regulating, and how this can be implemented.⁴ Even after state-level legislation is adopted, it can take up to 2 years to actually take effect.

Furthermore, there are several limitations to current state legislation. For example, most state-mandated policies for fertility preservation coverage include commercial market plans but do not apply to public plans such as Medicaid, which often ends up excluding the populations most likely to benefit from fertility preservation coverage.⁵ State-to-state variations exist in what services are covered, such as initial assessment and evaluation, what tissues can be cryopreserved, and how long these tissues can be stored. Incongruities between state and federal law are another complicating factor. Additionally, discrepancies between various society guidelines create difficulty from a coverage and legislative standpoint. Many laws refer to the American Society for Reproductive Medicine or American Society of Clinical Oncology guidelines, but only the American College of Obstetricians and Gynecologists guidelines clearly define at-risk populations and specify which treatments may cause infertility in the female population.

Opportunities for Future Progress

We need specificity and flexibility of policy benefits to be clinically meaningful.⁵ In other words, we want the policy to cater to the individual and not the other way around. We also need to expand practice guidelines to inform benefit coverage. As mentioned, some of these practice guidelines can be too broad and nonspecific. To tackle this, we need more white paper statements and expert committee opinions with specifics regarding recommendations for fertility preservation from major national societies that lawmakers and legislators can look to for guidance. Otherwise, we are leaving it up to insurance companies to decide what they will or will not cover. Furthermore, we need the inclusion of publicly insured and self-insured populations for universal access, including Medicaid, as this is the population that would most likely benefit from fertility preservation coverage. Last, we need consistency between state and federal policies to avoid roadblocks and bureaucratic hurdles.

In conclusion, reproductive health IS health. At its heart, this is a commonsense issue and almost universally supported on a bipartisan basis. We need the awareness of policymakers, which is where the urology workforce can come into play. Whether your state has active legislation or not, you can make a difference by contacting your state representatives and helping in the fight for fertility preservation coverage for our patients suffering from iatrogenic infertility.