Being a patient advocate in the oncofertility space means standing at the intersection of medicine, policy, and lived experience—and ensuring that the voices of adolescent and young adult (AYA) cancer patients are represented. In recent weeks, I’ve had the privilege of meeting with fellow advocates and a leading drug manufacturer to discuss the realities patients face when navigating fertility preservation during and family building after cancer treatment. These conversations reaffirmed something I see every day through Worth the Wait, patient voices are powerful and they can create change.
Advocacy in oncofertility is rooted in storytelling. Patients name the barriers that systems overlook—especially the crushing financial burden of cancer and fertility treatments. For many AYAs, the cost of fertility preservation is not just high; it is prohibitive. Often patients are charging $10,000+ on a credit card to ensure their eggs are frozen before chemotherapy. Cancer treatments, egg/sperm/embryo storage fees, and time away from work compound into a level of financial toxicity that can shape a survivor’s future as profoundly as their diagnosis.
When advocates bring these realities directly to manufacturers, policymakers, and clinicians, it shifts the conversation from theoretical need to human impact. Worth the Wait carries these stories into rooms where decisions are made, with the FDA, ASCO and other professional organizations, and with industry partners who have the power to fix the problem collectively.
Our advocacy work doesn’t stop at representation—we train oncofertility patients and survivors to become advocates themselves. Through workshops and mentorship, we help patients transform their experiences into influence. When survivors speak about affordability, equity, and the right to build a family after cancer, they illuminate gaps that data alone cannot capture.
Patient advocacy in oncofertility is not a role; it’s a responsibility. It is the ongoing work of ensuring that every survivor’s future is treated as worth protecting.
