Cancer Survivor Advocacy Insights: Zac’s Journey and the Power of Patient Voice
Written by Christian Espinoza, NPAF 2025 Intern
When Zac was diagnosed with cancer in July 2019, his life changed overnight. In just four months, he endured three rounds of chemotherapy and a stem cell transplant. But beyond the disease itself, what made the journey even harder was the difference in the quality of care he experienced between two institutions: Yale New Haven Health and Dana Farber Cancer Institute.
At Yale New Haven, despite its status as a comprehensive cancer center, Zac described the care as “one of the most negative healthcare experiences I probably ever had in my life.” Orders were mixed up, lab work was delayed for hours, and the transplant doctor “didn’t really go out of his way” to understand his case.
By contrast, a second opinion at Dana Farber in Boston was “night and day.” Staff had reviewed his records before he arrived, knew his case in detail, and treated him with empathy. “Everybody had the same mission, the same goal,” Zac said. This seamless coordination restored his confidence and reinforced how vital compassionate, organized care is for patients.
Insurance, Nonprofits, and Financial Aid
Zac credits his employer-based insurance, secondary coverage through Connecticut Medicaid, and financial support from nonprofits like the Leukemia and Lymphoma Society (LLS) for getting him through treatment. Even in remission since January 2020, he continues to rely on nonprofit programs for help with annual visits and copays.
“I know nonprofits are pushing advocacy and fundraising much harder now than they had in the past,” Zac shared. He believes these groups will become even more essential as legislative changes threaten patient protections and financial assistance under the Trump administration.
Finding Healing Through Advocacy
Zac now serves on the patient advisory board of the Leukemia Research Foundation’s Patient Advocate Foundation (PAF) and is active in advocacy and peer mentorship programs. “It’s very healing… just to share my story and especially with other folks going through similar experiences,” he said. “You’re never alone, no matter how dark it might seem.”
This resonated deeply with me as an advocate myself. During my internship at the Los Angeles LGBT Center in 2022, I saw how systemic barriers often fail marginalized communities. For example, I met a 17-year-old queer and undocumented youth seeking legal relief after parental abuse. Because he wasn’t out to his parent and was underage, meaning he required parent signature for services, the system couldn’t help him—despite the urgency of his situation as immigration cases for Special Immigrant Juvenile (SIJ) tend to be time sensitive. This mirrors what many LGBTQ+ patients face in healthcare, where rules often overlook the realities of chosen family and nontraditional caregivers.
Systemic Barriers for LGBTQ+ Patients
For Zac, his partner Michael was his primary caregiver throughout treatment. Living in urban Hartford, they were lucky to be treated with compassion—staff were very flexible to allow Michael to stay past visiting hours. But Zac acknowledged that LGBTQ+ patients in rural areas, where resources and support systems are fewer, often face far greater challenges.
Tip for Patients: If you rely on a partner, friend, or chosen family for caregiving, ask to list them as your healthcare proxy early in treatment. This can help prevent unnecessary barriers.
NPAF: Driving Systemic Change
Zac’s story illustrates why we must build systems that center patients, not bureaucracy. Advocacy organizations like the National Patient Advocate Foundation (NPAF) fight for equitable, affordable healthcare by amplifying patient voices and pushing for policies that remove barriers to care.
As an NPAF policy intern, I’ve seen firsthand how this work can transform lives. Patients shouldn’t have to rely on “luck” to receive compassionate, coordinated care. Zac’s journey is a call to action for all of us to keep fighting for a healthcare system that works for everyone.
Get Involved
Join us at NPAF to advance patient-centered solutions:
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Visit www.npaf.org today to learn how you can make an impact. Together, we can ensure every patient gets the care they deserve.