Kids with cancer deserve more than a cure

As an oncologist and a leader at a national cancer organization, I’ve watched countless families celebrate the incredible news that their child has defeated a pediatric cancer. But I often don’t have the heart — at least not right away — to tell them what’s coming next: a lifetime of doctor’s visits, health issues, and stress, much of it related to the treatments that were used to ensure their child’s survival.

Treatments for pediatric cancers work well, but they come at a steep cost. Survivors of childhood cancers are twice as likely as their peers to develop at least one chronic health condition by age 50 and, on average, have 17 of them. For the youngest people with cancer, achieving remission is a major milestone to be celebrated, but it isn’t the end of their health problems; it’s often the beginning of a new journey.

Childhood cancer survivors face hearing loss, heart disease, infertility, and a multitude of other conditions — in addition to secondary cancers — as a result of their treatment.

Daniel Patton, a Texas-based volunteer with The Leukemia and Lymphoma Society, the organization I work with, has a story that too many childhood cancer survivors can relate to. As a toddler, he battled leukemia, a blood cancer that once killed most children within three months of their diagnosis. But today, more than 85% survive at least five years after their diagnoses.

At one point, Daniel was taking 32 pills a day and receiving countless infusions of chemotherapy. He persisted with treatment even as his hair fell out in clumps, his bones grew brittle, he gained weight, and other kids he knew in the hospital succumbed to cancer.

His family celebrated when he was finally in remission. But then new challenges arose. Daniel underwent treatment at such a pivotal developmental stage that it led to a learning disability and hearing loss. Now 31, he is a successful business owner and salesperson. But oncologists monitor him for secondary cancers and relapses; endocrinologists are watching his brittle bones and teeth. His osteoporosis is so severe, he says, that even eating soft foods like French fries has led to broken teeth.

Of course, Daniel isn’t alone. Compared to those who’ve never had cancer, childhood cancer survivors are eight to 10 times more likely to die of cardiac causes, and pediatric Hodgkin lymphoma survivors are about four times more likely to have strokes.

To put it bluntly, if those of us in the cancer community focus our efforts just on saving the lives of kids facing cancer, we’re failing. Of course we want them to survive. But we need to defeat childhood cancers in ways that spare kids a lifetime of adverse health impacts.

That goal is possible by implementing the right policy solutions.

Chief among them is extending federal research funding to learn more about the health problems childhood cancer survivors may face later in life. Not far behind is expanding access to clinical trials.

Clinical trials offer access to potentially lifesaving treatments. They are especially important for pediatric cancer patients, who face unique health concerns and often do not have the same access to FDA-approved treatments as adults.

Trials are often out of reach for the children who need them most. Trials are primarily conducted at large academic medical centers, which might be far from home. Patients and families must often coordinate travel time and expenses, leave their support systems, find care for other siblings, and clear insurance barriers — just to get into a trial.

These barriers can be especially problematic for the 40 million children insured through Medicaid or the Children’s Health Insurance Program, meaning that half of all U.S. children face extraordinary challenges to access trials. To receive out-of-state care through Medicaid, patients and families must navigate bureaucratic red tape, which often causes significant treatment delays. Most who need access to out-of-state trials have already exhausted other options; they don’t have the luxury of waiting for paperwork to be approved.

To be clear, many treatments that are tested in trials aren’t successful. But some are. And trials are the only option for finding better treatments that don’t come with the terrible long-term consequences of toxic chemotherapy but instead provide patients with improved quality of life and a life free of therapy-induced chronic health conditions.

In the United States alone, about 16,000 children are diagnosed with cancer each year, representing just a fraction of the 1.7 million Americans diagnosed with cancer. Barriers to taking part in trials slash the already-small pool of prospective participants. Researchers seeking children with cancer who best qualify for their trials are often limited to those who live in the same state or in neighboring states with pre-arranged agreements with neighboring Medicaid programs, or who have superior insurance networks.

The status quo leaves both patients and researchers in a perpetually painful schism: doctors and researchers are desperately seeking trial participants, while their ideal patients and their families attempt to circumvent often insurmountable barriers on the other.

There is some hope on the horizon. Congress is considering a bill, the Accelerating Kids’ Access to Care Act (S. 1544 and H.R. 3089), that would significantly ease the burdens on kids with cancer and other serious health conditions and their families while advancing essential research to identify treatments with fewer harmful effects. The act would cut bureaucratic red tape and expedite the process for children with cancer who are covered by Medicaid or the Children’s Health Insurance Program to participate in out-of-state trials.

Connecting children struggling with cancer with the care they need and the right researchers can simultaneously help them and propel pediatric cancer care forward.

To honor its smallest cancer fighters, the U.S. must pass this law. Yesterday’s scientific advancements allowed children to live longer. But that’s not nearly enough. They should also be able to live better.

Gwen Nichols is a hematologist/oncologist, cancer researcher, and chief medical officer of The Leukemia & Lymphoma Society.