Responding Disruptively to a Most Profound Disruption: Working to Help Childhood Cancer Survivors

To say that childhood cancer is profoundly disruptive doesn’t begin to scratch the surface of the impact the disease has on young patients and their families. The diagnosis changes everything in an instant. Then there is treatment, which often separates a young girl or boy from family and friends; from school; and from the life one knew or the life not yet really begun.

Who could imagine receiving such news and living through a childhood marked not by the hopes and dreams and expectations of youth but rather by fear and uncertainty and wondering whether a treatment might save you?

Matthew Zachary could. He knows all of this and more. As he told a crowd at the SXSW conference last week in Austin, Texas, he was diagnosed with terminal brain cancer at the age of 21. That was 22 years ago.

While Matthew’s cancer ended his training as a concert pianist, he discovered a new purpose and in 2007 founded the nonprofit organization Stupid Cancer, a leader in young adult cancer advocacy, research and support. 

Facing ‘The Consequence of Cure’
While Bristol-Myers Squibb (BMS) focuses largely on researching and developing oncology treatments for adults, we also pursue greater understanding of pediatric oncology.  However, given the unique complexities of childhood cancer in its many forms – there are 12 major types – we extend our reach beyond our own labs to support global research collaborations that bring together experts in the field from many organizations.

Childhood cancer is rare, with fewer than one percent of all cancer cases occurring among youngsters; and when they do, survival rates are relatively high, approximately 80 percent in the U.S. While more children suffering from cancer are surviving, they then must face what Matthew calls “the consequence of the cure.” That is, living with the physical and emotional challenges of surviving cancer.

Today, there are an estimated 1.4 million survivors under age 40 in the U.S., 500,000 of whom beat cancer before the age of 13. Unfortunately, the majority live with co-morbidities that are often a consequence of treatment, ongoing care or remission.

The issues of childhood cancer survivorship are also unique.

Supporting Emotional, Physical Side Effects
Matthew shared his story as part of a panel BMS presented at SXSW on “Hacking Childhood Cancer: Creating Support Systems.” During our hour-long discussion we talked about new ways to help with the emotional and physical side effects.

Also joining the panel was Mona Jhaveri, Ph.D., founder of Sound Affects. Her nonprofit organization uses a crowdfunding platform and partners with musical artists to raise funds to help support biotech entrepreneurs who are developing technologies and other solutions for combating cancer.

Was the panel unique for SXSW? Yes. Disruptive? Some might say so. SXSW is not the place where one would normally find a company such as ours, a 130-year-old biopharma company. But BMS will go where we need to go, and meet and speak with whom we need to speak, to find the next best idea in pursuing solutions to our priorities. And helping childhood cancer patients is one of our business priorities. 

Delivering Hope
For children diagnosed with cancer in Africa, the challenge is still greater.

For example, while in the U.S. 80 percent of children with cancer go into remission, in sub-Saharan Africa, nearly 90 percent of children diagnosed with do not survive. This is largely due to a significant lack of healthcare workforce and treatment capacity.

In response, the Bristol-Myers Squibb Foundation, in partnership with Texas Children’s Cancer and Hematology Centers and Baylor College of Medicine International Pediatrics AIDS Initiative at Texas Children’s Hospital, along with the local governments, launched Global HOPE in 2017.

This comprehensive pediatric oncology training and treatment program is designed to address the lack of diagnosis, treatment and care in pediatric hematology-oncology in southern and east Africa. Global HOPE is building long-term capacity to treat pediatric cancers and blood disorders through on-site training of local medical professionals and medical students, and the creation of training hubs to serve the southern and east African regions.

And closer to home, we’ve lowered the age of inclusion for our clinical trials, made a number of contributions – including one for $2.5 million to The V Foundation to support pediatric immuno-oncology research – and are working with organizations such as Stupid Cancer to support advocacy and awareness raising efforts.

While helping childhood cancer patients is a business priority for BMS, there is no commercial opportunity in this work for us. It’s not about that. It’s about who we are as an organization, a company whose culture is defined by a singular focus on patients, a culture that distinguishes us among our peers. So, we need to help, as does our industry. Many members do already. More can. Childhood cancer is profoundly disruptive. We must respond in kind.