Parenthood After Cancer: Protecting Options for Survivors

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Livestrong Voices

7 min readMar 24, 2021

For the 150,000 people of reproductive age diagnosed with cancer every year, treatment can often interfere with one’s fertility options [1]. In certain cases, survivors may require emergency fertility preservation procedures just days after their diagnosis. These procedures are often financially and emotionally burdensome. For this reason, fertility preservation coverage is a major priority for many young adult cancer survivors. However, only 11 states currently protect emergency fertility preservation procedures in health insurance coverage [2]. During this year’s legislative season, advocacy efforts for fertility preservation bills are vital to ensuring expanded coverage for young adult cancer survivors.

To explore this issue further, we sat down with Joyce Reinecke, cancer survivor and Executive Director of the Alliance for Fertility Preservation.

Why might survivors and loved ones consider fertility preservation?

During an individual’s cancer journey, there are several ways that cancer and cancer treatment can affect fertility. First, the cancer of the ovaries, uterus, cervix, prostate, or testes can cause direct damage to the reproductive system, and surgery to remove these organs can reduce or destroy the gametes like eggs and sperm [3]. These are the reproductive cells that contain our unique genetic material. Also, sometimes the late effects of treatment can negatively impact the body in such a way that makes it difficult to cause or maintain a pregnancy. For example, in men, damage to certain nerves can limit the ability to transport sperm; for women, damage to the heart, lungs, or uterus can make it difficult to carry a pregnancy or can make it high-risk. Due to this, 40–80% of women and 30–75% of men are at risk for reproductive compromise.

Often, young adults require immediate cancer treatment. In some cases, this may mean survivors have as little as 24 hours to make a lifetime of big decisions, including fertility plans. In fact, Reinecke points out that “young adult survivors ranked fertility as one of their top concerns, second only to mortality.” In these circumstances, emergency fertility preservation is essential to protecting a survivor’s chance to build a family in the future.

Why should fertility preservation be covered?

The financial burden of fertility preservation varies greatly depending on the service type, clinic, individual needs, and geography. For example, sperm banking for men can range from an average of $500-$1,000, and storage is a separate cost of $150-$400 per year [4]. For women, an option like egg freezing ranges from $10,000-$15,000 and can cost an average of $300-$500 per year for storage [4]. Currently, 40 states do not have a mandate to ensure fertility preservation procedures are covered by insurance plans. As a result, this significant financial burden falls upon survivors and loved ones who already face the expenses of their cancer treatment. For many survivors who want to prioritize their fertility, it may simply not be an option due to a lack of insurance coverage. Among the 43% of respondents to Livestrong’s 2018 Fertility Survey, 69% reported a lack of insurance as the reason for foregoing fertility preservation [5].

Fertility preservation coverage is not only about alleviating the financial burden on survivors. As Reinecke states, it also removes stigma by acting as a “stamp of approval” on fertility procedures. Without it, men and women often deal with infertility in isolation. This is especially true for communities of color in which cultural associations between infertility and self-worth hinder cancer survivors from seeking care [6]. Coverage has the potential to expand access to information and encourage clinicians to have more conversations with their patients about their fertility options. In fact, a study published in the Journal of the American Medical Association found “states with legislatively mandated coverage of fertility preservation had significantly higher rates of fertility risk discussion compared with states without legislation [7].” Additionally, coverage not only improves the quantity but also the quality of fertility preservation. States that have passed coverage mandates have shown significantly better compliance with fertility preservation measures under the Quality of Oncology Procedures Initiative (QOPI) standards [8]. By spurring these crucial conversations, cancer survivors are empowered to make informed decisions about their fertility and future family plans at a critical point in their cancer care.

What work is being done to solve this issue?

Many legislative solutions have been proposed in state legislatures across the nation. Since 2017, 11 states have adopted coverage mandates for emergency fertility preservation procedures [2]. Utah was the first state of this legislative year to pass a fertility preservation coverage bill. This bill, limited to Medicaid, is a groundbreaking step to bring coverage to those in need. [9] As a result of these efforts nationwide, Reinecke estimates that over 30 million survivors have been covered. Many state legislatures are currently considering similar bills in this year’s session. For example, in Texas’ 87th Legislative session, House Bill 293 (authored by Representative Nicole Collier) aims to expand health benefit coverage for certain health benefit plans. Specifically, HB 293 would “require health benefit plans to provide coverage for fertility preservation services to a covered person who will receive a medically necessary treatment that the American Society of Clinical Oncology or the American Society for Reproductive Medicine has established may cause impaired fertility [10].” In other words, this legislation would mean survivors undergoing surgery, chemotherapy, or radiation could have their emergency fertility preservation procedure covered by insurance.

The Importance of Personal Testimony

According to Reinecke, the most important tool in advocacy is personal testimony. She goes on to elaborate that “in many of these legislative sessions, lawmakers become so focused on budgets and numbers that it is easy to overlook the survivors who are central to the issue.” Providing personal stories of how cancer has affected oneself or one’s loved ones can put the entire issue into perspective for lawmakers. It serves as a reminder that there are people behind the statistics.

For survivors who see sharing their personal medical information as a barrier to participating in the advocacy process, there are options to privately share your story with lawmakers. For example, while some states have online systems that automatically post written testimonies to be publicly available, you can submit private letters and call your legislative representatives directly if you choose to maintain privacy. Another option is to attend private testimonial meetings with legislative committee members. If you are ready to become an advocate or would like more information, the Alliance for Fertility Preservation can help you identify how to get involved at a level comfortable to you through their Advocate Survey: https://www.surveymonkey.com/r/9QQTX

Advocates for Fertility Preservation Providing Testimony in Support of HB 293 at House Insurance Committee Hearing at the Texas Capitol

The Future of Fertility Preservation Coverage

Of course, there are hopes to expand coverage even further. Reinecke explains that while the first priority is coverage for emergency fertility preservation, the goal for future legislation is to expand to other fertility-threatening medical conditions, new procedures, and assisted reproductive technology. For example, relatively new procedures such as ovarian and testicular tissue freezing allow pediatric cancer survivors to preserve their options for the future but also require longer storage. Sickle cell disease is a medical condition that often requires similar fertility-threatening procedures. Finally, assisted reproductive technologies including in-vitro fertilization (IVF) that help cancer survivors utilize their preserved fertility and build a family are often not included in fertility preservation legislation. However, there is significant support for these procedures to be included in future legislation.

While oncofertility coverage is being debated in state legislatures, many survivors and loved ones need options today. There are many programs dedicated to providing reproductive information, resources, and financial support. Livestrong Fertility is one such resource that connects cancer survivors and loved ones across the United States to discounted services and free medications at over 700 sperm banks and reproductive clinics. Survivors can also find financial resources on fertility preservation through the Livestrong Fertility Program, Walgreens’ Heartbeat program, RESOLVE, and Team Maggie for a Cure. Informational resources are also available through the Young Survival Coalition, SaveMyFertility, and The Chick Mission.

In the legislative realm, change is a slow process in which we must appreciate every step that brings us closer to full coverage of fertility preservation. With each state that passes legislation to cover these procedures, more survivors of young adult cancer have the chance to manage their own fertility. With any cancer diagnosis comes difficult decisions, but those conclusions no longer have to include the choice between cancer treatment and having a family. Throughout this advocacy effort, these bills and personal testimonies remind us that survival should not mean compromise.

Financial Fertility Resources

Livestrong Fertility: https://www.livestrong.org/what-we-do/program/fertility

Team Maggie for a Cure: https://www.teammaggieforacure.org/

The Chick Mission: https://www.thechickmission.org/

RESOLVE Grant List: https://resolve.org/what-are-my-options/making-infertility-affordable/infertility-treatment-grants-scholarships/

Walgreens Heartbeat Program: https://www.walgreens.com/topic/pharmacy/specialty-pharmacy/fertility-preservation.jsp

Informational Fertility Resources

Alliance for Fertility Preservation: https://www.allianceforfertilitypreservation.org/

RESOLVE: https://resolve.org/

SaveMyFertility: https://www.savemyfertility.org/

Young Survival Coalition: https://www.youngsurvival.org/

References