From Survivor to Changemaker: Building a More Inclusive Future for LGBTQIA+ AYA Cancer Survivors

b-present Team
June 12, 2025

“We didn’t want to have LGBTQ in the name to make it safe for those who are not out to their families or communities. We just look like another cancer resource on paper—but for those seeking connection, we’re so much more.” – Hailey Johnston, ESCAPE Founder

At the intersection of adolescence, cancer, and identity, Hailey Johnston found an unlikely calling—creating the community she needed but didn’t have. Diagnosed with Hodgkin’s lymphoma at 16, just six weeks after her mother received the same diagnosis, Hailey quickly found herself juggling the roles of caregiver, patient, student, and oldest sibling of six. But it was the silence around her identity and the lack of peers who “got it” that inspired her to build ESCAPE: a community designed for LGBTQIA+ adolescent and young adult (AYA) cancer patients, survivors, and caregivers.

In a powerful episode of The Support Report with b-present, Hailey shared her personal experience, from isolated teen patient to fierce advocate and founder of ESCAPE, a grassroots organization serving adolescent and young adult (AYA) cancer patients, survivors, and caregivers. Their goal is to provide equitable resources and highlight the voices of lesbian, gay, bisexual, transgender, queer/questioning, intersex, asexual, plus (LGBTQIA+) folx and cultivate an environment that is safe for self expression within the cancer community.

From Caregiver to Patient

Hailey’s story began in a blur of caregiving and denial. At 16, she was managing the household while her mom navigated treatment for lymphoma.

“I kept telling myself I didn’t have cancer, that I just had mono or strep,” she recalled. When she was finally diagnosed, her world turned upside down. “What’s wild is that based on my scans, my doctor thinks I probably had it before my mom did.”

She was thrust into pediatric care, where she was too old for the cartoon-covered walls, but too young for adult spaces. Her bed didn’t fit. Her needs weren’t acknowledged. She had no peers to relate to. And for Hailey, who was also just beginning to question her identity as a queer person, the isolation was even more profound.

Building Belonging in a Broken System

That early experience would plant the seeds for ESCAPE. After meeting other LGBTQIA+ young adults at a national conference in 2018 and realizing how invisible their experiences were, Hailey created a private Facebook group. Within a week, it had over 100 members.

“There was nowhere for us to go outside of that annual LGBTQ cancer session,” she said. “So I made a group. And then built a website in eight hours so people could find us.”

The need was overwhelming—and validating.

The organization also spearheads LGBTQIA+ Cancer Awareness Week, an initiative launched in 2021 to educate allies and uplift underrepresented voices.

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The Cost of Invisibility

Hailey spoke candidly about the discrimination LGBTQIA+ patients face in healthcare, especially when compounded with cancer. Misgendering, assumptions about sexuality, and erasure of non-cisgender narratives are still common. She recalled a moment during a breast cancer screening when a nurse asked about her boyfriend. “I responded, ‘Her name is Amy,’ and the nurse just left the room.”

The stakes are even higher with the current political climate. With over 300 anti-LGBTQIA+ bills introduced in 2024 alone, protections are fragile. The overturn of Roe v. Wade, for example, could limit access to IVF and fertility preservation—critical options for both LGBTQIA+ people and cancer survivors. “If IVF is one of your only options and it’s taken away, what are you left with?” she asked.

The barriers aren’t just political. They’re deeply personal. “It’s not just about policies. It’s about who gets to exist, to love, to parent, to heal. And whether the system makes space for us.”

Showing Up, Authentically

So what does great support look like? For Hailey, it’s about presence, empathy, and showing up without needing to fix anything.

“Empathy says, ‘I don’t know what you’re going through, but I want to be there for you.’ Sympathy says, ‘That’s hard. I’ll be over here.’”

Hailey encourages supporters to:

Be specific – “I’m at the store—can I grab you some snacks or TP?” is better than “Let me know if you need anything.”
Treat your friend like themselves – Talk about your life too. Don’t act like they’re made of glass.
Listen without judgment – And honor what’s shared, even if it makes you uncomfortable.
Be intentional – Allyship isn’t passive. It’s something you do.

These align with the b-present Foundation’s Supporter Roadmap, which emphasizes showing compassion, providing authentic and consistent support, and improving communication, especially when someone’s identity intersects with systemic barriers.

Takeaways for Supporters and Professionals

Whether you’re a friend, caregiver, clinician, or advocate, here’s how you can help build a more inclusive AYA cancer community:

Use inclusive language. Terms like “people with cancer” or “patients” instead of “women with breast cancer” help validate diverse identities.
Create safe spaces. Don’t assume someone’s sexual orientation or gender identity. Let them tell you who they are.
Offer presence, not pity. Remember Hailey’s advice: “Show up. Listen. Care. That’s enough.”

Educate yourself. Start with the resources listed below to understand how to support LGBTQIA+ AYA patients better.

Creating a Movement with Pride and Passion

Hailey’s passion and resilience ripple throughout everything she has built and continues to build in the community. For many in the LGBTQIA+ cancer space, ESCAPE isn’t just a group. It’s a refuge. A revolution. A reminder that you belong.

“I didn’t have the language or example growing up,” Hailey reflected. “So now I’m trying to be that for someone else.”

Let’s help create a world where no one has to choose between their identity and their healing.

Links & Resources:

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