The power of patient advocacy in cancer care

One in five people develop cancer in their lifetime. In 2013, Larry was one of those people. For over a decade, Larry has been living with stage IV non-small cell lung cancer (NSCLC). Yet he remains hopeful, and now aims to spread that hope to others diagnosed with cancer. 

“Specifically for lung cancer, new treatments are being approved every month,” Larry says. “Between 2017 and 2022 the US Food and Drug Administration (FDA) approved more treatments in that space than in the 50 years before.” While progress is encouraging, it also reinforces the importance of patient advocacy – an area Larry “evolved” into. 

After a year of treatment, Larry, 66 at the time, experienced good results from treatment and had good scans, but was at a standstill: “I realized I had no idea of what to expect next.” Then, he reached a significant moment in his cancer journey: finding GO2 for Lung Cancer, a US lung cancer patient founded and focused organization. “That was the beginning of my education, empowerment and advocacy for myself.”  

On top of offering personal support, GO2 for Lung Cancer provides information and resources for both patients and caregivers about lung cancer, including advances in research and treatment. For Larry, this encapsulates patient advocacy: “It’s about empowering patients to find the best care possible that meets their wishes for how their illness should be treated.” 

Why is patient advocacy important in cancer? In 2020, an estimated 10 million people died prematurely from cancer. By 2030, it is expected that this number will rise to nearly 13 million. These numbers remind us of the importance to advocate for people living with cancer. Patient advocacy can improve health literacy, raise awareness through educational initiatives and advocate for better prevention, treatment and care.

With more treatment options than ever, Larry believes that there is a greater need for patients to know more about their disease and choices. He admits that his treatment and disease history would be “significantly different” were it not for the support from a patient organization. That is why he now dedicates his time to helping others. 

This spirit of passing it on is what Jeff Dunn, President of The Union for International Cancer Control (UICC), means when he speaks of forging a community: “Cancer doesn’t just affect one person. It impacts loved ones, the family and whole communities. Our ability to understand cancer and improve cancer treatment depends on our willingness to hear the patients’ voice and recognize the truth of their experience.”

Crucially, these discussions could also raise awareness around early detection. The earlier cancer is detected, the more choices patients have in treatment and the higher the chance of success. But according to a 2023 Global Lung Cancer Coalition (GLCC) study, 37.5 percent of adults didn’t know the symptoms of lung cancer.  

How your story can bring about change 

Jeff, who was diagnosed with mantle cell lymphoma, a type of lymphatic cancer, in 2022, has been working in cancer control since 1989. Despite his long experience working with people living with cancer, he uses one word to describe his diagnosis: surreal. “All the time I have spent with patients over the past 35 years can’t prepare you for being diagnosed yourself.”  

Sharing a personal story can help raise funding for necessary research, it can help companies like us identify solutions to problem areas in the patient journey, and it can be the push that brings about change in the health system. Jeff adds: “Patient perspectives hold tremendous power, inspiring policy makers and health service planners to do better.” Ultimately, every story shared contributes by directing our joint efforts towards shaping a future that supports patients’ needs, so they can live better and longer lives.

So how can we empower patients to advocate for themselves and others? Larry, who was recognized in 2023 by GO2 for Lung Cancer for his efforts in inspiring others, believes that there are two crucial elements: education and mentorship.

“I want to do anything I can to support them, to help them find their voice and understand how to advocate for themselves to achieve the type of care that is best for them,” says Larry. “Patients sharing their experience is critical to help doctors, pharmaceutical companies and law makers understand what is best for patients.”

What’s patient advocacy? 

Patient advocacy covers all activities aiming to uphold or support the needs and interests of patients, whether they’re performed by, or on behalf of, patients.  

What’s non-small cell lung cancer (NSCLC)? 

NSCLC is a lung cancer that accounts for 85 percent of lung cancer diagnoses.  

What are some ways I can advocate for myself? 

Here are some tips Jeff provides to advocate for yourself or a loved one:

• “Understand your disease. It’s easier to speak when you know what you’re going through. Understand your health, and then be prepared to engage with professionals around you for your own treatment options or professionals to bring about change.” 
• “If you don’t understand the information you’ve been given, seek out a health professional who can explain it to you.”
• “Build a network. That can include family and friends. In some cases, there are things called inviting health movements where patients gather around a particular issue.” 
• Connect with organizations or support groups who specialize in advocating for people with cancer – they may provide information and support.
• “Speak with specialists. A general oncologist may not know of the latest innovative treatment.” 
• “Never be afraid to seek a second opinion. Ask questions about your diagnosis and your treatment options.”
• Reach out to local health authorities or government representatives to voice any concerns about your diagnosis or treatment, clearly outlining your needs and interests.