What pediatric cancer centers can do to improve access to patients
Access to fertility preservation programs for pediatric cancer patients is becoming increasingly important; however, the barriers to access these services are cause for concern.
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A panel of pediatric oncologists and bioethicists presented this topic at the 2021 ASBH Humanities and Bioethics Conference.
Stefanie Thomas, MD, MS, pediatric hematologist/oncologist, Director of the Adolescent and Young Adult Oncology Program at Cleveland Clinic and one of the presenters, says that treatment outcomes for this patient population have improved significantly over the last decade, moving quality-of-life conversations, such as fertility preservation, to the forefront.
Treatment regimens and, in some cases, cancer pathologies alone can cause infertility. In response, centers are creating programs and physicians are adapting their practices to include fertility preservation counseling and intervention.
However, this practice isn’t always equitable— services can be cost-prohibitive, only regionally available, or are simply not part of patient counseling at the time of diagnosis and treatment planning.
“There is a push nationally to make fertility preservation an option for all pediatric cancer patients,” says Dr. Thomas. “A lot of patients return as young adults and say, for example, ‘I had no idea that the chemotherapy I received at six years old would render me infertile,’” says Dr. Thomas.
She continues, “In order to take better care of these patients, it’s ethically important for these conversations to happen now, and also to recognize— and change— that currently, these patients’ options are entirely a matter of geography, income and their treating physician.”
Having conversations with patients and families—and doing it early. “Not talking about this is no longer an option,” says Dr. Thomas. Seth Rotz, MD, a pediatric hematologist/oncologist and Director of the Fertility Preservation Program, agrees.
“Regardless of the patient’s age, our goal is to have a conversation about fertility and infertility and potential fertility preservation options with all of our new cancer diagnosis patients before we start therapy. It’s never too early.”
He continues, “For some patients and families, having that conversation about fertility can provide some solace. You’re talking about life after treatment, which can be a hopeful dialogue and alleviate some distress, as difficult as those conversations may be.”
Investing in resources and partnering with specialists to elevate oncofertility offerings. Cleveland Clinic offers a full spectrum of fertility-preserving options, including:
The team recently received funding to develop a protocol for a still experimental strategy, cryopreserved testicular tissue in prepubescent males, with the hope to one day use the tissue for autologous transplantation of spermatogonial stem cells.
“We can give the option of fertility preservation to our entire patient population,” says Dr. Thomas. “In large part, this is because we partner with our incredible colleagues across the institution in Women’s Health and Urology, who provide their expertise—and often very quickly—in order for us to then get the ball rolling with cancer treatment.”
Dr. Thomas says that in some states advocacy efforts have helped shape insurance coverage for oncofertility procedures, but this is inconsistent nationwide and can still be difficult to get reimbursed or approval upfront.
“Fertility preservation needs to be treated like any other medical complication related to treatment, and those complications are covered by insurance or they’re covered by Medicare,” she says. “And that is not what is happening now.”
She also says that philanthropy funding at the center-level can help offset some or all of the costs of oncofertility services for patients and their families.
“There is a lot of work to be done in this space, but we are focused on raising awareness among colleagues and advocating for high-impact short-term changes, like working with Institutional Review Boards to approve experimental procedures, creating better continuity with colleagues treating adult reproductive issues, and lobbying for better insurance and Medicare coverage.”
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