Tiffany, age 21, lives a full life despite treatments for cancer as an adolescent.

Tiffany, age 21, lives a full life despite treatments for cancer as an adolescent.

Supporting Children with Cancer

More Patients Are Surviving into Adulthood, but There’s More Work to Do

April 25, 2018

T

iffany was 11 when her life in Wyoming veered sharply off track.

She’d was always tired and never hungry. Just off, really, she recalls.

Her parents brought her to see the pediatrician. A nurse drew blood. Then she went back to school.

Hours later, when class let out, her parents picked her up at school and brought her back to the doctor’s office. The results were, to say the least, unexpected.

Tiffany had cancer.

While it remains the No. 1 cause of death by disease among children, cancer is still very rare. Less than 1 percent of all people diagnosed with cancer are younger than 18. But each day in the U.S., 43 new childhood cases are diagnosed. In 2010, the year Tiffany first learned of her disease, 15,700 other U.S. children were diagnosed with cancer.

After a cancer diagnosis, a family is usually referred to a specialized children’s cancer center. That’s because the disease is distinct in children from its many forms in adults. There are three overall types of children's cancer: leukemia (cancer of the blood), lymphoma (cancer of the immune system) and solid tumors (which includes about 12 major types of cancers of the bone, organs and tissues).

Cancer care centers offer the advantage of being treated by a team of specialists who know the differences between adult and childhood cancers, as well as the unique needs of children and teens with cancer and their families. Going to a hospital that specializes in treating childhood cancer helps ensure that a child gets the best available cancer treatment.

A specialist knows more about care options specific to pediatric cancer. Young patients are not just small grown-ups. They face unique challenges, including greater emotional needs and care regimens that can affect an entire family. With more adolescents surviving into adulthood, young patients also need unique support systems to help them along the way.

“Helping childhood cancer survivors is just as challenging and as important as advancing the research in pediatric oncology,” Chief Commercial Officer Murdo Gordon said.

This issue of Life & Science Magazine examines some of the unique challenges of childhood cancer and the ways in which Bristol-Myers Squibb supports young oncology patients across the globe. The first story, Hacking Childhood Cancer: Creating Support Systems, recounts Bristol-Myers Squibb’s creation and participation in a panel discussion on this very topic at the South by Southwest conference in Austin, Texas.

The second article, Staying in Touch, comes out of Bristol-Myers Squibb France, which is supporting a program to help young cancer patients isolated during treatments stay connected to family and classmates through use of an interactive robot. The final story, Bringing Hope Where There was Little, covers the development of pediatric oncology care centers in south and east Africa though an initiative called Global HOPE (Hematology-Oncology Pediatric Excellence), a project funded in part by the Bristol-Myers Squibb Foundation.

High Stakes

There is good news in the field of pediatric oncology. More children than ever are beating cancer. Because of major treatment advances in recent decades, more than 80 percent of children with cancer now survive five years or more, according to the American Cancer Society.

Tiffany, for example, is 21 now and works a full-time job. She enjoys the outdoors, travels and camps with her friends every chance she gets. Yet this makes her part of the growing army of childhood cancer survivors who may carry battle scars well into adulthood.

That’s why tackling the side effects through science and support programs is more important than ever. Because once they are cured, up to 95 percent of childhood cancer survivors could suffer health-related issues by the time they are 45 years old. These issues are either side effects of the cancer or could also be the result of its treatment.

The biggest challenge, said Vickie Buenger, president of the patient advocacy organization Coalition Against Childhood Cancer (CAC2), remains living with the effects of some treatments. These could include secondary malignancies and long-term failures of the heart, lungs, thyroid, hearing, bones, vision or reproductive organs.

The promise of less toxic, precision medicine personalized to the patient has never looked more important than when viewed through the pediatric lens.

“We don't know the long-term health effects of precision medicine options, but we have hope that they will be more benign than some of the traditional regimens,” Buenger adds.

The FAIR Trials Initiative aims to raise awareness and create tools to facilitate the inclusion of adolescents into clinical trials so that young patients have access to innovative research. — Rosanna Ricafort

research

Collaboration is Key

Still, it’s clear the science of pediatric oncology isn’t moving as fast as it is in the adult space. Why? There’s not enough funding or a large enough test population for researchers to adequately conduct appropriate clinical research and trials. In fact, only four percent of federal government cancer research funding supports the study pediatric cancer.

Against this backdrop, fewer than 10 drugs have been developed for use in children with cancer since 1980, according to the National Pediatric Cancer Foundation.

Bristol-Myers Squibb is partnering with CAC2 and other companies, organizations and advocacy groups to find solutions for childhood cancer patients and their families. Building partnerships with regulatory authorities, patient advocacy groups, academic centers and industry peers allows the company to pool research, access tissue repositories, share pre-clinical testing models and expand access to clinical trials where it makes scientific sense.

Rosanna Ricafort, a pediatric oncologist and clinical team leader for Hematology, Breast, and Pediatric Cancers at Bristol-Myers Squibb, is one of four biopharma members of the ACCELERATE Steering Committee, a global committee comprised of representatives across academia, industry, advocacy and regulatory bodies, with the shared mission of improving drug development for children and adolescents with cancer. She is active in the FAIR (Fostering Age Inclusive Research) Trials Initiative, advocating globally for greater access for adolescents with cancer to clinical trials by lowering the age of eligibility when scientifically appropriate.

“The minimum age barriers to clinical trials are often only based on perception,” Ricafort said. “The FAIR Trials Initiative aims to raise awareness and create tools to facilitate the inclusion of adolescents into clinical trials so that young patients have access to innovative research.”

Even with this approach, pediatric-focused clinical trials will continue to be necessary, particularly for cancer types that occur exclusively in pediatric patients. The rarity of childhood cancers makes accrual onto clinical trials challenging. Further, it’s hard for parents to discern which available treatment options and clinical trials hold the most promise for their child.

The pediatric oncology community has long recognized the importance of collaborative networks for clinical and translational research. Researchers need to increase these collaborative efforts worldwide, and consider different models of research and development, Ricafort added. Companies need to look earlier in the drug development process to evaluate the most effective targets and create clinical development plans with innovative study designs to speed delivery of data and ultimately new agents for childhood cancer, she said.

Supporting Patients and Family

Francesca, a survivor of childhood cancer, was granted a wish by Make-A-Wish® in 2017. Research shows granting wishes can build the physical and emotional strength children need to fight their illness. Bristol-Myers Squibb pledged to support wishes for 75 children with critical illnesses last year, including Francesca. She chose to travel with her family to Italy and visit her relatives in a small seaside village. Bristol-Myers Squibb continues to support Make-A-Wish in 2018.

Francesca, a survivor of childhood cancer, was granted a wish by the Make-A-Wish organization in 2017. Research shows granting wishes can build the physical and emotional strength children need to fight their illness. BMS pledged to support wishes for 75 critically ill children last year, including Francesca. She chose to travel with her family to Italy and visit her relatives in a small seaside village. BMS continues to support Make-A-Wish in 2018.

All of which points back to the importance of collaboration, according to Ricafort and other experts.

Bristol-Myers Squibb collaborates not only to help advance the science of pediatric oncology but also to help children receive the support they need as cancer survivors.

One Bristol-Myers Squibb collaboration making a big impact is that with Make-A-Wish. For the second consecutive year, Bristol-Myers Squibb provided a $1.25 million donation to the organization to grant wishes to more than 75 children with cancer, the most common critical illness suffered by wish recipients. Research shows granting wishes can build the physical and emotional strength children need to fight their illness.

“Bristol-Myers Squibb and Make-A-Wish share a deep commitment to providing emotional support for children with critical illnesses and their families,” said David Williams, president and CEO of Make-A-Wish America. “We know that when a wish kid feels better, they have potential to get better. Through wish granting, our alliance provides a direct avenue for Bristol-Myers Squibb to make a tangible impact on patients’ emotional well-being.”

Bristol-Myers Squibb is branching out to support survivors in other ways, as well. For example, the company pledged $2.5 million to The V Foundation’s pediatric immuno-oncology research program last year. And it supports a program called “Scholarship America,” offering 50 young cancer survivors a chance to continue their college or vocational education.

“Helping childhood cancer patients is a priority for Bristol-Myers Squibb,” CCO Gordon said. “While there’s little commercial opportunity in this work for us, it’s not about that. It’s about who we are as a company that is singularly focused on patients.” 

For Tiffany, she remains on daily treatment and, at 21, is planning a career in the medical field. She also supports other childhood cancer patients by volunteering at a summer camp in Colorado for pediatric oncology patients and their siblings.

“Once I realized I can be there to help them, it completely changed my outlook on life,” she said. “Now I try to help others more than I help myself.”


Related Content

SXSW 2018

Hacking Childhood Cancer: Creating Support Systems

Healthcare innovators tackle how to improve the experience of children fighting for a healthy future.

Staying in Touch

The robot known as VIK-e allows children to stay connected with their family and classmates rather than isolated during treatment.
The role of a pediatric oncology nurse is challenging under the best of circumstances.  Imagine having to worry about whether your hospital has running water or if securing safe blood, if any blood at all, is even possible.

Bringing Hope Where There Was Little

Pediatric oncology nurses volunteer for training in Malawi, as part of Global HOPE, a Bristol-Myers Squibb Foundation-sponsored initiative to build treatment capacity for children with cancer in southern and east Africa.