Thoughts of having a family may be the subject of an idle moment’s reverie for many young people. A cancer diagnosis can make them inescapable.
Not all cancer treatments have an impact on fertility, but for those that do, patients who hope to have children in the future — or simply wish to leave open the possibility — may opt for procedures that can preserve that ability. The availability of such procedures can relieve patients of at least one concern associated with cancer treatment. But it can be a complicated set of decisions, touching on long-held plans for family and parenthood, that sometimes must be made in a matter of days. The fact insurance doesn’t always cover the associated costs doesn’t make decisions around this issue any easier.
The Oncofertility Program at Dana-Farber/Brigham and Women’s Cancer Center and Boston Children’s Hospital helps patients and their families navigate the medical, emotional, and financial aspects of fertility preservation. Available to all adult patients whose treatment might affect fertility — and to all pediatric cancer patients — the program ensures that patients have the information to make well-thought-out decisions and the support to be confident with them. At the state level, Dana-Farber’s legislative action team is working to promote legislation that would require health insurers to cover the full costs of preservation services.
“It’s normal, human, and entirely appropriate for someone who hasn’t had a child or completed their family to want to be able to do so when their treatment is finished,” says Ann Partridge, MD, MPH, director of the Oncofertility Program, which is part of the Institute’s Survivorship Program. “The goal of our program is to ensure that patients have that opportunity, when possible. It’s part of making that person whole.”
Added burden
For patients dealing with the fears and uncertainties of a cancer diagnosis, making plans for future fertility may feel especially onerous. But the availability of fertility preservation can provide patients with a much-needed sense of control and hope.
“At a time when patients – and parents of pediatric patients – seem to have few choices, giving them the opportunity to think about family and how they want their future to look can be really empowering,” says Katelynn Brodigan, FNP, who counsels all pediatric cancer patients and their families on fertility issues. “Patients and parents feel that it gives them hope for the future – that we’re already thinking about life after treatment.”
A wide range of cancer treatments can affect fertility. These include surgery to remove the testes, ovaries, or glands of the reproductive system; hormonal therapy; radiation therapy that targets reproductive tissue; and certain types of chemotherapy.
The Oncofertility Program has an adult and pediatric branch, which coordinate closely. Although fertility issues and preservation procedures can vary depending on age and gender, the approach for guiding patients through the process is similar.
Patients are encouraged to mention fertility issues at their first visit with their doctor. Adult patients are referred to the Oncofertility Program by their care team. Patients meet with two nurse specialists: one discusses the risks to fertility posed by a patient’s treatment and describes the available preservation options; the other connects patients with the clinicians who perform these procedures and discusses the associated costs and logistics.
“The risks to fertility vary depending on a patient’s treatment,” Partridge relates. “Our approach helps patients consider whether fertility preservation is right for them, and, if they decide to pursue it, helps set up the necessary appointments.”
Regardless of whether treatment may affect their ability to have children, all pediatric cancer patients and their parents meet with Brodigan to discuss fertility issues. While sperm banking and egg freezing aren’t options for prepubescent children, other techniques are available. Prepubescent girls may have an ovary removed and frozen while they go through treatment. After they enter puberty, it can be reimplanted to begin ovulation. Prepubescent boys may have testicular tissue harvested and frozen. Research is underway to determine if implantation of this tissue following puberty can restore fertility.
Legislative action
Insurance coverage for fertility preservation currently consists of a patchwork of coverage options; some plans provide coverage for harvesting tissue for preservation, but not all pay for tissue processing and storage. In addition, there are varying degrees of required out-of-pocket costs for patients. To bring more equity into the system, Dana-Farber is supporting state legislation to require coverage of standard fertility preservation services. The Institute has mobilized its Legislative Action Network (LAN) — a group of individuals who advocate for legislation beneficial to cancer patients — to urge House and Senate members to sign on as co-sponsors of a bill mandating such coverage. LAN members also are reaching out to people — current and former patients, staff, and others – to testify in favor of the bill when it is brought before the Legislature for a public hearing, says Kate Audette, MSW, director of Government Affairs.
Filed jointly in the House and Senate in January of this year, the bill is required to be the subject of a public hearing by March 2022, at which advocates can share their stories and request a favorable report from the Joint Committee. Because it is a health insurance “mandated benefits” bill, it will be analyzed by the Massachusetts Center for Health Information Analysis, which will report on its costs to health insurance policyholders. From there, it may go before additional committees before potentially arriving on the House and Senate floors for a vote.