Fighting for Equity in Stomach Cancer: A Daughter’s Journey to Advocacy

May 1, 2025
Health Equity & Engagement

Fighting for Equity in Stomach Cancer: A Daughter’s Journey to Advocacy

Aki Smith

In this moving and insightful piece, Aki Smith, founder of Hope for Stomach Cancer, recounts how her father’s diagnosis became the catalyst for a national advocacy effort. As a Japanese American navigating a complex and often inequitable healthcare system, Aki witnessed firsthand the barriers that many stomach cancer patients face-especially those from underserved communities. Her story is both personal and universal, offering a compelling call to action for a more just, accessible, and inclusive approach to cancer care.

It started with a phone call just before Thanksgiving. My father had been experiencing black stools, a telltale sign of gastrointestinal bleeding. He was 71, an immigrant from Japan, with a family history of stomach cancer-and had never been to the emergency room of a hospital. When he was admitted, we feared the worst. But when the GI doctor called me days later and said, “Not cancer,” we breathed a sigh of relief. We celebrated that Thanksgiving as though we had dodged a bullet.

But the doctor was wrong.

Weeks later, my father went to a routine follow-up. When I called to check in, his voice sounded off.

“How did it go?” I asked.
“Not good,” he said. “I have cancer.”

That was the moment everything changed. I rushed to his side, and from that day forward, I became his advocate, his navigator, and, at times, his only hope in a system that was not built for people like him.

Hope for Stomach Cancer: A Mission Rooted in Experience

My father’s diagnosis in 2013 came with a grim prognosis- six months to live. In that moment, I wasn’t just his daughter. I became his researcher, insurance negotiator, and relentless advocate. But even as I fought for his care, I saw firsthand how broken the system was, particularly for stomach cancer patients.

I learned that systemic obstacles weren’t just delaying diagnoses-they were limiting access to novel therapies and preventing patients from reaching the experts and treatments that could save their lives.

It took nearly a decade to fully understand the structural barriers that make stomach cancer one of the deadliest and most overlooked diseases in the U.S. In 2016, I founded Hope for Stomach Cancer to bridge the gap between research and patient care. What started as a deeply personal mission has grown into a national movement-one dedicated to ensuring that no patient feels lost, alone, or ignored.

Identifying Barriers to Stomach Cancer Care

In 2022, we partnered with Komodo Health, leveraging one of the industry’s most comprehensive datasets to analyze real-world stomach cancer trends. What we discovered confirmed what I had already experienced with my father: patients face deep, systemic barriers that delay diagnosis and limit access to life-saving treatment.

We identified four major challenges that continue to impact stomach cancer patients today:

1. Age as a Disparity

My father had every risk factor-he was older, of Japanese descent, and had a family history. Yet his initial diagnosis was dismissive. If a high-risk patient like him could slip through the cracks, what about younger patients with no obvious risk factors? Many I’ve met were initially misdiagnosed-their symptoms mistaken for acid reflux or indigestion-only to be diagnosed later with late-stage stomach cancer.

2. Geographic Limitations

My father was first diagnosed at a local community hospital, where care was inconsistent and specialists disagreed on his treatment plan. It wasn’t until we sought a second opinion at an academic cancer center that he received the expert care he needed. But not everyone has that opportunity. There are only 65 NCI-designated cancer centers in the U.S., and many patients live hundreds of miles away from institutions with advanced therapies or clinical trials.

3. Socioeconomic Barriers

My father’s Medicare plan locked him into a network that didn’t include top stomach cancer specialists. I spent hours filing appeals, navigating insurance red tape, and fighting for access to out-of-network care. Without strong advocacy, he may never have received the treatment that helped save his life.

4. Racial and Ethnic Disparities

As a proud Japanese immigrant, my father felt most comfortable with Japanese-speaking doctors. But language and cultural familiarity didn’t always align with the highest standard of care. When he finally met a Japanese surgeon who told him he’d be able to eat sushi again after his gastrectomy, that was the first time he felt real hope.

These barriers aren’t just personal-they’re systemic. They define the reality for far too many patients facing stomach cancer in this country.

How Hope for Stomach Cancer Is Driving Change

At Hope for Stomach Cancer, we are working to dismantle these obstacles and provide patients with the tools, support, and knowledge they need to fight this disease. Our key initiatives include:

Education & Awareness

Our November 2024 campaign will focus on early detection, treatment options, and awareness, aiming to reach millions with critical, life-saving information. In 2023, our efforts reached over 17 million people across digital platforms.

Patient Support

We host support groups, webinars, and community events, connecting patients and caregivers with top specialists, survivor mentors, and trusted resources-ensuring no one feels alone in their journey.

Advocacy & Legislative Efforts

Policy was never my focus-until recently. In 2024, our advocacy led to the introduction of the Stomach Cancer Prevention and Early Detection Act, a historic legislative effort to expand screening access, increase public awareness, and address disparities in care.

Expanding Research Efforts

We are proud to serve as patient advocates on multiple Stand Up To Cancer (SU2C) research grants, helping shape research priorities and ensure that real patient needs are reflected in the search for better therapies. Additionally, through our collaboration with Komodo Health, we helped uncover that over 2,000 pediatric patients were diagnosed with stomach cancer between 2016–2021-disproving the long-held belief that this is solely an adult disease.

A Call to Action

Stomach cancer patients deserve better. They deserve earlier diagnoses, access to expert care, and a healthcare system that prioritizes their needs. At Hope for Stomach Cancer, we are committed to that future-but we cannot do it alone.

We invite medical professionals, researchers, and advocates to partner with us. Together, we can ensure that stomach cancer is no longer a silent killer but a disease met with awareness, early detection, and effective treatment.

For more information, visit www.StoCan.org or follow us on social media to stay updated on our latest initiatives.

Together, we can ensure that stomach cancer is no longer a silent killer but a disease met with awareness, early detection, and effective treatment.

Aki Smith

Executive Director and Founder of Hope for Stomach Cancer

Aki Smith is the Executive Director and Founder of Hope for Stomach Cancer. Inspired by her father’s battle with the disease, she has become a leading voice in stomach cancer advocacy, research collaboration, and patient empowerment, working to improve outcomes and access for patients worldwide.

Stomach Cancer

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Fighting for Equity in Stomach Cancer: A Daughter’s Journey to Advocacy

“How did it go?” I asked.
“Not good,” he said. “I have cancer.”