How Scientists See the Field Moving Forward and Addressing the Underrepresentation of Childhood Cancer Research

The annual American Association for Cancer Research (AACR) member meeting welcomed more than 20,000 cancer experts April 14th-19th at the Orange County Convention Center in Orlando, Florida. The meeting provided ways to explore the latest breakthroughs and advancements in cancer treatment, including childhood cancer. With large-scale keynote sessions that involve dozens of brilliant minds from across the world to educational breakout sessions and poster presentations, attendees learned about the latest research findings, shared ideas, discussed cutting-edge advancements, and connected with others in the field. This meeting is crucial for moving the field of cancer research forward and paving the way for future treatments. And Bridge To A Cure Foundation was there.

Advancements in Cancer Research

One major area of focus at this year’s AACR meeting was precision medicine, which offers personalized cancer treatments that target the specific genetic mutations feeding an individual patient’s cancer. This approach has shown tremendous promise in treating certain types of cancer, giving hope to patients and families who previously had limited treatment options.

Another exciting area of research that was discussed entailed the use of artificial intelligence (AI) to analyze vast amounts of data and develop new cancer treatments. This innovative technology has the potential to revolutionize cancer research and improve patient outcomes by identifying new patterns and insights that would be difficult to detect using traditional research methods. — and would take exponentially longer to detect without the use of machine learning.

However, despite these promising developments, cancer research still faces numerous challenges. One of the most pressing is the need for increased funding to support research and development. Without adequate resources, progress in cancer research will continue to be slow and limited, and patients and families will continue to suffer. Additionally, collaboration between researchers, clinicians, and patient advocates is crucial to advancing cancer research and improving patient outcomes.

At the AACR meeting, researchers highlighted the importance of working together to share knowledge and resources and to ensure that patients remain at the center of research and treatment decisions.

It’s important to recognize that behind each research presentation and statistic at the prestigious AACR gathering are real people who have been affected by cancer. Patients and their families are living with the devastating impact of this disease every day, and they rely on the efforts of researchers and experts to find new and better treatments. The advances in precision medicine and AI are not just scientific breakthroughs, they offer hope and better outcomes for individuals and families affected by cancer.

Overall, the AACR meeting is a reminder that progress is happening in cancer research, but there is still much work to be done. By prioritizing funding and collaboration, and by keeping patients at the forefront of research and treatment decisions, we can continue to make significant strides in the fight against cancer.

The Underrepresentation of Childhood Cancer Research

The underrepresentation of childhood cancer research is a devastating reality made apparent at the AACR meeting. Just a small fraction ofthe hundreds of presentations, booths, white papers, and research discussions touched upon childhood forms of the disease.

Despite the tremendous progress that has been made in adult cancer research, childhood cancer remains an area that is significantly underrepresented. With such a small fraction of cancer research focusing on children with cancer, our youngest patients face more limited treatment options and a lower chance of survival than adults with some of the deadliest forms of cancer. It also means that families are left to navigate a complex and confusing healthcare system, often with limited resources and support.

The underrepresentation of childhood cancer research is a human tragedy that affects real people and families every day. At the Children’s Brain Tumor Network booth, Bridge To A Cure leaders helped CBTN share the great news that researchers can freely access one of the largest data collections of its kind in the world.

This call to action invited researchers, clinicians, and policymakers to access shared data and collaborate to prioritize the needs of children with cancer and to dedicate the necessary resources to finding better treatments and cures.

Childhood cancer is an area of research that has historically received less funding and attention than adult cancers, despite being the leading cause of death from disease in children. While it is important to recognize the progress that has been made in childhood cancer research, there is still much work to be done. We cannot let another day go by without taking action to end the suffering of children with cancer and their families.

Consider supporting our mission by learning more about our efforts to empower discovery through collaboration, and the unique need for personalized medicine for every child with cancer.

New studies show that machine learning will forever change the diagnosis and treatment of brain tumors.

After decades of humankind accomplishing amazing feats, the children’s cancer space has continued to fall short. In the last forty-plus years, just four treatments have been developed—and nothing is close to a cure. That’s why, when we founded Bridge To A Cure Foundation, we exclaimed, “We’ve had enough.” We set out on a mission to collaborate with those who unleash discovery and accelerate breakthroughs. And, we’ve partnered with those willing with us to lead the charge: including the Children’s Brain Tumor Network (CBTN) and St. Baldrick’s Foundation. You can learn more about these partnerships here.

Our judgment to build these collaborative relationships has not been misplaced.

Artificial intelligence (AI) is something we hear about frequently these days. Essentially, AI enables the completion of complicated tasks using powerful, advanced computing technology. AI has demonstrated it can be assigned a task that may take humans months or years to complete and complete it in just days or even minutes. In the children’s cancer research space, it’s become potentially the biggest buzzword of the year—and for good reason. Because of the tremendous efforts of many in the Bridge To A Cure network, when it comes to AI applications in childhood cancer, big things are happening.

The Pediatric Brain Tumor Atlas gives researchers access to large and comprehensive enough data that AI is now being introduced to make better diagnoses and treatment protocols for children with brain tumors. This, in turn, means researchers are better informed—which translates to a better chance at a bright future for our most at-risk cancer fighters.

Some ways AI can advance progress for sick kids is by:

• Near-automatic detection of brain tumors on MRI scans
• Providing subtype predictions that can lead to quicker, more accurate diagnosis
• Help doctors identify the most appropriate treatment options for each individual child
• Assist in detecting disease progression

Without the CBTN Pediatric Brain Tumor Atlas, these monumental efforts simply wouldn’t be possible. Efforts such as:

Predicting underlying tumor subtypes

There are dozens, if not hundreds, of childhood brain tumor subtypes. This is one of the many reasons that research in this area is so complex. Led by Benjamin Kaan from the Harvard Medical School and using the CBTN data, researchers are developing methods that allow quicker and more accurate identification of tumor subtypes. These new technologies can help bridge the knowledge gap between researchers’ limited understanding of the characteristics of certain types of tumors. AI insights will allow researchers to better help children by matching each individual’s tumor to a specific therapy that can best help them.

Advancing imaging diagnostics

Dr. Nabavizadeh and his team at the Children’s Hospital of Philadelphia (CHOP) are focused on impact rather than popularity. This doesn’t mean that their work should go unnoticed, however. As the Director of Imaging at CHOP and an important research partner for CBTN, his focus now turns to improve MRI imaging procedures. Such procedures that will allow not just the quicker identification of tumor subtypes, but also better detect how tumor progression responds to treatments, allowing a quicker understanding of what is working and what isn’t.

In the overwhelming majority of studies performed so far, the implementation of AI technologies in imaging demonstrates superiority in areas from tumor diagnosis to dosage calculation for radiotherapies. In many cases, AI performs with more accuracy than clinical experts alone. Artificial intelligence capabilities for children’s brain cancer have grown exponentially in recent years — and although this progress is paramount, the fight isn’t over yet. Projects like the one led by Dr. Nabavizadeh face an endangering lack of resources that stymie technological advancement. Learn more about how you can support these efforts at the Bridge To A Cure website.

Five-year survival rates don’t begin to tell the story of the cruel toll cancer inflicts on innocent kids — and all who love them.

“No. No, this isn’t possible. This is wrong. All wrong. Someone run another test. Get me another doctor. For Christ’s sake, someone punch me and wake me up from this nightmare.”

This is how one mom described her feelings upon getting the cancer diagnosis that would lead eight days later to the death of her baby girl.

Losing a child has been called the ultimate loss — the deepest, darkest hole of grief into which a human can plunge.

Yet childhood cancer is so inexplicably painful, so agonizing, so brutal, that cancer charities, researchers, and oncologists take heart where they can. For many, it’s in statistics such as an increased five-year survival rate for kids with cancer.

In recognizing June, Cancer Survivors Month, The American Association for Cancer Research touts “spectacular advances in cancer research” that have lengthened lives. The American Cancer Society says 84% of children with cancer now survive five years or more, a huge increase since the mid-1970s, when the five-year survival rate was about 58%.

They are measuring childhood survival rates like a batting average in baseball. But a child’s struggle against cancer is a journey, not a single event. Both the distance traveled and the quality of the journey is how we should measure success. And right now, that journey remains fraught with massive physical, mental, and emotional suffering for kids and their families.

The statistics overlook the trauma routinely inflicted in the standard of care treatments — the trembling fear of the child anticipating her next visit, the family’s economic devastation, the stress and emotional anguish of watching your child suffer through painful and debilitating treatments that can last for years. All these can leave lifelong scars for those fortunate enough to survive to adulthood.

 Cancer Traumatizes Everyone in the Family

The horrors that kids and families experience in battling cancer are cruel and agonizing, as anyone who has lived through this ordeal can attest. The pain and suffering children endure as they undergo standard cancer treatments spread devastation like tornadoes as they tear through parents, siblings, grandparents and other relatives, friends, and caregivers.

It starts with having to try to explain to a child that he or she has a potentially deadly disease — that the headaches, nausea, tiredness, swelling, lump, or aches in their bodies can’t be kissed or wished away. How can you as a parent answer when your child asks you: “Why me, Mom? Did I do something wrong? Is God mad at me?”

 Kids’ Suffering Brings Tears to Their Eyes and Their Parents’

Kids undergoing chemotherapy are constantly poked with needles and injected with powerful chemicals that destroy their immunity, making them more susceptible to other potentially fatal diseases, including COVID-19. The drugs are so toxic that we would probably not use them if there were any other choice. Cytostatic antibiotics, for instance, are among many chemotherapy drugs that are “cardio toxic” and can damage the heart if used too long.

Watching a child suffer has been called a living nightmare for parents. There’s nothing more agonizing than listening to your child cry “Stop, please, stop!” when the pain gets too much for them to bear. You feel so helpless as you watch them lose their hair, their appetite, and their energy and struggle through pain, nausea, rashes, sores, kidney and bladder problems, anemia, and bleeding. These are all among the long list of side effects kids endure through our current inadequate arsenal of chemo, radiation, and other standard treatments.

Then there is the sadness you feel in trying to comfort a child who feels isolated from their friends and sad as they miss out on doing things other kids can do. Cancers upset family dynamics, as siblings have to step up and help out parents facing exhaustion, and give up part of their childhoods as they wrestle with their own fears about the illness.

Financial Stress and Your Worst Fears

With all that you do to try to comfort your child, you face the added stress of wondering how you’ll be able to pay off massive medical bills that pile up as you are forced to take time off from work to drive, often long distances, for treatments. At the very time you need to be focused on caring for you child, you must wrestle with thoughts like: “I can’t keep missing work….What’s going to happen to my job? How am I going to pay off these thousands of dollars on my credit card?” All the while you struggle to keep up a hopeful and cheerful outlook for your child, while pushing down fears of losing your baby.

For too many families, there is no happy ending — just a never-ending string of days filled with loss, of dreams destroyed and milestones that will never be measured.

“The death of a child is considered the single worst stressor a person can go through,” Deborah Carr, chair of the sociology department at Boston University, says in Fatherly. “Parents and fathers specifically feel responsible for the child’s well-being. And they’re not just losing a person they loved. They’re also losing the years of promise they had looked forward to.”

Dread, Uncertainty and Lifetime Scars

As we applaud the fact that more children are living beyond five years, we can’t overlook the struggles they endure to reach that milestone, or the continued pain and suffering that may await them the rest of their lives.

Long-term side effects (called late effects) include damage to the heart, lungs, brain, nerves, kidneys, thyroid gland, or reproductive organs that can impact growth and development, emotions, thinking, learning, and memory. Adults who experienced childhood cancer have twice the suicide risk as the general population. The impact to mental as well as physical health is substantial.

Kids and teens that have undergone some types of chemotherapy may face higher risks of developing other cancers as they grow up. They often live with anxiety, depression, and fear that the cancer will come back. As survivors of childhood trauma, they may carry hidden scars that never go away.

“Because childhood cancer survivors are living longer, they are having more late effects after cancer treatment,” the National Cancer Institute says. “Survivors may not live as long as people who did not have cancer.”

The most common causes of death in childhood cancer survivors are:

1. The primary cancer comes back.
2. A second (different) primary cancer forms.
3. Heart and lung

When you consider the pain, suffering and agony cancer inflicts on families kids — even those fortunate to survive five or more years — it’s clear that how far we have to go before we can claim victory over this enemy.

We must clear a path to finding cures and treatments that don’t subject survivors to lifelong suffering, and give every child a chance to chase their dreams. To do that, the Bridge To A Cure Foundation proposes a radical change in the way we conduct clinical trials.

The clinical trial process was created for adults — not children. As a result, 50% of medicines used to treat children have been extrapolated from adult data without data to support safe and effective dosing for kids. The performance criteria for clinical trials is also based on adults, and fails to consider the child’s horrific suffering, the emotional strain on parents and siblings, the potential for deep psychological scars, or the debilitating impact of the financial burden.

Children are not small adults, and their bodies’ physiology and chemistry react differently to cancer treatments. We need a new clinical trial protocol tailored to children, and performance standards that protect their quality of life as they and their families go through this journey. Next month, we’ll look at this in more depth.