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The ‘Forgotten Demographic’
How medicine is changing to better serve teen and young adult patients.
Photo credit: Mike Ciesielski
Matsie Bosmans: “Every time I thought I was ready to get a job or go back to school, there was another bump in the road.”
“The therapy that we give is more intense, but it turns out that young adults can tolerate that.”
Matsie Bosmans was 17, finishing her junior year of high school and looking forward to a summer of waitressing at the beach in North Carolina. But she had to call the Outer Banks restaurant to say she wouldn’t be able to work there after all. She needed to stay in Maryland for a year—actually, 54 weeks—of chemotherapy. She had cancer.
Nearly three years later, Bosmans, now 19, is being treated for her third recurrence of the disease. She wants to go to college like her friends, or at least hop in the car for weekend visits. Instead, she’s living in Howard County with her parents and younger sister, going to Baltimore for weekly treatments in the pediatric oncology unit at The Johns Hopkins Hospital.
Bosmans is one of about 120 patients between the ages of 15 and 25 treated each year in that unit. New research and treatments for illnesses, including AIDS, cystic fibrosis and cancer, are rooted in a growing recognition that this age group has its own physical and emotional characteristics, different from those of young children or older adults.
“This patient population is unique,” says Peter Shaw, pediatric oncologist at Johns Hopkins All Children’s Hospital. “In the past, they’ve fallen through the cracks. If they’re treated in the pediatric world, they may be the oldest one on the floor. If they’re in the adult oncology world, the person next them might be 80.”
Now, the dividing line between pediatric and adult care is no longer fixed at 18. Bosmans and others can remain in the Johns Hopkins Children’s Center while doctors focus less on their calendar age and more on making sure they receive the right treatment for their cancer type and stage of life.
Bosmans meets regularly with Allie Gubin, a social worker specifically for cancer patients between 15 and 25, who was hired in 2012 through a partnership with the Baltimore-based Ulman Cancer Fund for Young Adults. Gubin’s patients are in a developmental stage already defined by concerns about looks, relationships and independence. Her job is to help Bosmans and others cope with an illness that can steal their hair, strain their friendships, and put jobs and careers on hold.
“I work with the families to help support their adjustment to life with cancer, to find a balance between going through treatment and trying to retain some normalcy,” says Gubin, who was key to creating a fertility preservation protocol at the hospital that includes education, counseling and connecting patients with fertility services.
One of the first studies to parse out the particular medical needs of adolescents with cancer was published in 2008. It found that 16- to 20-year-olds with acute lymphocytic leukemia, a cancer that strikes all ages, had a disease-free survival rate of 63 percent with pediatric care, compared to 39 percent for patients in the same age range who received adult treatment.
“It makes a lot of sense,” says Donald Small, director of pediatric oncology. “The organ systems of an adolescent or young adult are more like a 10-year-old than a 65-year-old. The therapy that we give is more intense, but it turns out that young adults can tolerate that.” Within a few years of that study, The Johns Hopkins Hospital raised the age of patients getting
active pediatric oncology treatment
from 21 to 25.
Bosmans, now a few weeks shy of her 20th birthday, wants others to know what it means to be a young adult with cancer.
“Every time I thought I was ready to get a job or go back to school, there was another bump in the road,” she says. “It kind of stinks when strangers ask where you’re going to school or if you’re working. I don’t have answers to any of that. I don’t think many people understand it. I honestly feel like we are the forgotten demographic when it comes to cancer.”