Point of view

Fixing the fault in our system: Improving cancer care for teens

July 10, 2014 

  • How to help

    Find information about the Be Loud! Sophie Foundation at beloudsophie.org.

'The Fault in Our Stars" is one of the most popular movies of the summer - but my family and I won't be seeing it, and we never will. It tells the story of a teenage girl diagnosed with cancer, and that hits too close to home for us.

My sister Sophie was diagnosed with cancer last year at age 14. She was a freshman in high school when she was diagnosed, but once she went into the hospital, she was never able to go back to school. Instead, she spent nine months in and out of UNC Children's Hospital, enduring many rounds of chemotherapy, two major surgeries and countless procedures.

Sophie died at home on Aug. 30, but before she died, she was passionate about finding ways for other teenagers with cancer to enjoy the same support we were able to provide for her. The medical care that Sophie received at UNC was exceptional; we are eternally grateful to the hospital and all the people there who strive to make it a humane and supportive environment for patients and families.

What many people who flocked to the theater to see this movie don't know is that, although cancer survival for children under 15 and for adults over 50 has climbed steadily at 1.5 percent a year over the past several decades, it has improved only 0.5 percent for patients ages 15 to 24. Overall survival rates for this age group with some types of cancer have made almost no progress in 30 years.

The reasons are complicated, but what we have learned is that there is less research money for this age group and fewer clinical trials (only about 10 percent of 15- to 19-year-olds take part in research), and there are few medical centers that offer teens and young adults support that addresses their unique needs. A person's teenage years are such a crucial time for identity formation and independence, both of which can be shut down by a cancer diagnosis.

Sophie was determined that cancer not define her - she kept doing a lot of the things she was interested in with our help and money - but many teenagers and young adults don't or can't do this. In short, this is a demographic that desperately needs national attention.

This is the mission of a new national organization, Teen Cancer America, which was founded in 2012 by Roger Daltrey and his bandmate in The Who, Pete Townsend, to replicate a very successful program they started 20 years ago in the United Kingdom: the Teenage Cancer Trust.

And it's the mission of the Be Loud! Sophie Foundation, which my parents, my sister Annabel and I started in Sophie's memory to support adolescent and young adult cancer patients and their families at UNC Hospitals. We are working closely with many doctors, nurses and administrators at UNC to plan the best way forward.

We hope that "The Fault in Our Stars" will raise national attention and that the Be Loud! Sophie Foundation can catalyze local change.

That change would take shape first by funding something entirely new at UNC: a youth support coordinator who would get to know patients closely during their time in the hospital and provide support based on their individual interests. In Sophie's case, this meant we arranged dance lessons in the hospital with her own dance teacher, time to write her blog, visits to the local farmers market when she felt well enough and a birthday visit from the UNC field hockey team.

If we are successful, UNC would be the first hospital in the U.S. to hire someone whose only job is to ensure that adolescent and young adult cancer patients get the physical, developmental, social and emotional support they need.

When Sophie was diagnosed with cancer, practically all she knew about teen cancer was from the book "The Fault in Our Stars." She had read it a few years earlier and loved the story. Little did she know that it would become her reality.

About 5,330 15- to 19-year-olds will be diagnosed with cancer in the U.S. this year. For this group and those who have yet to be diagnosed, we can and should do more.

Elsa Steiner, 18, is one of three daughters of Niklaus and Lucy Steiner of Chapel Hill.

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