Having a voice in your own care is one thing. Having that voice actually change something is another.
This week, I’m highlighting Jenny Maenpaa, Vanessa Evans, and Marleah Dean Kruzel. Their posts start in different places: a chemo chair, a dialysis career that grew into an advocacy role, and a university panel that’s coming up soon. But they keep coming back to the same question. What happens when the patient’s perspective is part of the decision, not something added afterward?
Jenny Maenpaa: Keeping a choice when so much else is out of your control
Jenny Maenpaa, a licensed therapist and breast cancer survivor, was diagnosed at 39. When she learned she’d need chemo, her first thought was, “I don’t want to lose my hair!”
She’s clear that it wasn’t about vanity. In her words, it was about “waking up every morning, looking in the mirror, and seeing me instead of my diagnosis.” It was also about privacy, and choosing “when, where, and to whom I revealed my illness.”
She chose scalp cooling, also called cold capping, during her infusions. She doesn’t make it sound easy. It meant extra hours in freezing caps before, during, and after every session. But she says keeping her hair gave her back her agency, her privacy, and her sense of identity.
Now she’s turned that experience into advocacy for access. She recently shared her story with Kristie Reeter and News 12, and she thanked New York State and Governor Hochul for making New York the first state to require insurance coverage for scalp cooling during cancer treatment. The Governor’s office notes that without coverage, patients can pay $1,500 to $3,000 per round of chemo out of pocket. The law took effect January 1, 2026, and it applies to certain state-regulated plans, so coverage still depends on the kind of plan you have.
I chose Jenny because she names something that’s easy to dismiss from the outside. Side effects aren’t just medical. They change how you see yourself and how others see you. Her message is simple: every young patient should know their options and get to decide what matters to them.
Vanessa Evans: Making the patient voice part of everything
Vanessa Evans is Director of Advocacy and Communities at Fresenius Medical Care. Fresenius recently shared her story, and she reposted it with a line that stayed with me: “It’s hard to believe that my own personal health condition has led me to the most impactful and important career of my life.”
Fresenius’s feature shows how long that road has been. She was diagnosed with chronic kidney disease at 12, received a kidney from her mother at 18, and has been on dialysis for nearly 30 years. Along the way she moved from in-center treatment to home hemodialysis, with a technician mentor who gave her the confidence to place her own needles.
Her advocacy grew out of showing up: volunteering, attending events, and talking about her experience. That led to consulting, and later to a full-time role. According to the same feature, she now supports a network of about 100 patient advocates in the U.S. They don’t give medical advice. They share experience, help people learn about treatment options, and help them figure out what to ask their care teams.
She’s also Chief Advocacy Officer of Kidney Connective, her passion project focused on access to transplantation and living kidney donation.
I chose Vanessa because she describes her mission plainly: include the patient voice in everything. In her words, that means “educate, empower and support this community.” Her story also shows what can happen when a healthcare organization brings that experience inside instead of only consulting it now and then.
Marleah Dean Kruzel: When having a voice isn’t the same as having influence
Marleah Dean Kruzel, Ph.D., opens her post with a question: “Who gets a voice in decisions about cancer?”
Her list is long: patients, communities, researchers, healthcare systems, advocacy organizations, and policymakers. Then she adds the line that tied this week’s edition together for me: “having a voice & having influence are not always the same thing.”
She’ll be facilitating an advocacy panel on that topic at the Communities, Health & Democracy Research Symposium at the University of Utah on Friday, October 23. The panel brings together four perspectives:
Sara Kavanaugh, a patient advocate, communications strategist, and host of The Positive Gene Podcast
Crystal Y. Lumpkins, PhD, a researcher focused on community-driven research, cancer genetic counseling, and health disparities
Wen-Ying Sylvia Chou, a health communication researcher and former NIH program officer
Clare Dowling Dougherty, a women’s health and patient advocate and CEO of the Brem Foundation to Defeat Breast Cancer
They’ll talk about how a patient’s experience becomes advocacy, how communities can meaningfully influence research, how researchers can use evidence to push for change, and how those voices actually reach the places where decisions get made.
Marleah says she’s most interested in that last question because “communication is the bridge between lived experience, research, & action.”
I chose Marleah because she’s asking the question a lot of us run into after we start speaking up. We’ve been invited to the table. Now what? The symposium is free and open to the public, hosted by the Edna Anderson-Taylor Communication Institute, and runs 9:00 a.m. to 4:30 p.m. in the Language & Communication Building, according to the university’s events calendar. If you’re near Salt Lake City, it’s worth your time.
From voice to influence
Jenny fought to keep a choice during treatment, then worked to help other patients get that same choice. Vanessa turned decades of living with kidney disease into a role where the patient perspective shapes the work every day. Marleah is creating space to ask how those voices actually reach the people making decisions.
Together, they left me with a question:
Where are patients being heard, and where is that actually changing what happens next?
You don’t need a title or a stage to help close that gap. Sometimes it starts with asking about your options, sharing what you learned, or pointing someone toward a resource they didn’t know existed.
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