 Jen Belle and Katie
PHOTOS COURTESY OF JEN BELLE
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Jen Belle's life turned upside down when she took her then 3-year-old daughter Katie to the emergency room — and learned she had a baseball-sized neuroblastoma tumor.
Katie ultimately spent more than 200 nights in the hospital enduring chemotherapy, stem cell transplants and other therapies to treat her cancer. Now, Katie is 19. She’s an active swimmer getting ready to start college. Like many young cancer survivors, she lives with chronic health issues. “Two-thirds of childhood cancer survivors have chronic complications, not from their cancer but from their cancer care,” Jen says. “Katie has to deal with so many more health issues than any of her peers. The reality is that saving their lives comes at a significant cost to their well-being as they grow up. Research is the only way to change that.” |
Jen has volunteered with COG’s Patient Advocacy Committee since 2016 and became the committee chair in 2024. She shares insights about what the committee does and the important role patient advocates play in clinical trials.
How did you get involved with the Patient Advocacy Committee?
I got involved with patient advocacy after Katie’s treatment. Her oncologist, Julie Park, MD, knew I was passionate about science and improving care, and she recommended me for a committee at Seattle Children's, where Katie was treated.
After doing that for a few years, Dr. Park told me about another opportunity with COG, and I was happy to get involved. I’m a strong believer in research and Katie participated in three COG studies during her treatment: donating a sample to ANBL00B1 (the neuroblastoma biology study that preceded Project:EveryChild), testing the use of not one but two stem cell transplants, and a monoclonal antibody to help flag any lingering cancer cells so the immune system could attack them.
What does the Patient Advocacy Committee do?
The Patient Advocacy Committee brings patient and family voices into the conversation when clinical trials are being planned. Our work runs from the time when a trial is an idea, through the closure of the trial. Right now, we have fifteen members, all of whom are either family members of someone who had childhood cancer or survivors.
How did you get involved with the Patient Advocacy Committee?
I got involved with patient advocacy after Katie’s treatment. Her oncologist, Julie Park, MD, knew I was passionate about science and improving care, and she recommended me for a committee at Seattle Children's, where Katie was treated.
After doing that for a few years, Dr. Park told me about another opportunity with COG, and I was happy to get involved. I’m a strong believer in research and Katie participated in three COG studies during her treatment: donating a sample to ANBL00B1 (the neuroblastoma biology study that preceded Project:EveryChild), testing the use of not one but two stem cell transplants, and a monoclonal antibody to help flag any lingering cancer cells so the immune system could attack them.
What does the Patient Advocacy Committee do?
The Patient Advocacy Committee brings patient and family voices into the conversation when clinical trials are being planned. Our work runs from the time when a trial is an idea, through the closure of the trial. Right now, we have fifteen members, all of whom are either family members of someone who had childhood cancer or survivors.
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We review clinical trial plans and join conversations during trial planning. We review patient education materials to make sure they are easy to understand. A big part of our work is weighing in on what the patient experience might be like and potential barriers.
For example, transportation or needing to take time off for study visits. We might explore if some visits could be virtual or if patients could have blood draws or other types of visits closer to home. What are some important milestones or successes of your committee? One of our core goals has been to grow our committee and have our members represent a wide range of perspectives and experiences. Over the past few months, we’ve brought on nine new advocates, five of whom are survivors. We’ve also brought on two parents who have lost their children, which is another important perspective for our committee to have. What are your goals for the future? Moving forward, we want to continue to grow our committee with attention to bringing in people from groups that aren’t currently represented on our committee. This includes: |
Jen and Katie now
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- Families of children with Down syndrome. Children with Down syndrome have a higher risk of developing acute lymphoblastic leukemia and acute myeloid leukemia, so we hope to bring on a family who can share their experience and provide insight on unique challenges of cancer care with a neurodiverse child.
- Survivors in their late teens and early 20s. This group is often busy with school or starting their first jobs and have limited time, but their perspectives are important to include.
- Families who have the greatest level of difficulty getting cancer care. This might include representatives who don’t have a car or face significant financial barriers to treatment.
My team is working with Michael Roth, MD, who leads the COG’s Adolescent and Young Adult Committee to pilot an additional group of patient advocates with a smaller time commitment. This could help bring in a broader group of advocates who don’t currently have the bandwidth to participate.
Our other primary goal is to make sure a patient advocate is part of every COG trial from start to finish.
The COG Patient Advocacy Committee meeting at the COG Fall Group Meeting 2024.
You’ve been a volunteer with the Patient Advocacy Committee for nine years now. What keeps you involved? Why is this work meaningful to you?
I find this work so important because I believe that changes — better treatments with fewer side effects — are possible. They’re happening in adult oncology and they can happen in pediatric oncology too. I also find the science fascinating. And it’s a privilege to be around incredibly smart, compassionate, dedicated scientists and physicians whose brains are moving at light speed — on a mission to help more kids. Working alongside these people who are truly saving lives is an absolute honor.
How can I learn more or get involved with the Patient Advocacy Committee?
Email me!
I find this work so important because I believe that changes — better treatments with fewer side effects — are possible. They’re happening in adult oncology and they can happen in pediatric oncology too. I also find the science fascinating. And it’s a privilege to be around incredibly smart, compassionate, dedicated scientists and physicians whose brains are moving at light speed — on a mission to help more kids. Working alongside these people who are truly saving lives is an absolute honor.
How can I learn more or get involved with the Patient Advocacy Committee?
Email me!
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What else do you want people to know?
Until Katie was diagnosed, I didn’t know the reality of childhood cancer treatment: Radiation and chemotherapy are decades-old drugs. They’re blunt instruments. They can take out a child’s cancer cells, but they can also do significant harm to the rest of their body — causing hearing problems, organ damage and other chronic conditions. I didn’t realize that pharmaceutical companies do not generally invest in pediatric cancer medicines because childhood cancer is too rare for drugs to be profitable. Government funding and philanthropy are the only ways to improve pediatric cancer treatments. Right now, the federal government is proposing budget cuts of up to 40% for all biomedical research funding. If these cuts happen, COG’s progress will slow and potentially stop in some areas. That’s why I encourage anyone who has had a patient or family experience with pediatric cancer to use their voice. Contact your elected leaders and share your story. Tell them why this research is important to you and how it has impacted a child in your life. The future of pediatric cancer research depends on it. |
Katie during her treatment.
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