The Invisible Cancer Population and What We Can Do About It

“Mom, it’s just the flu. I’m positive.”

Two weeks later I had a port in my chest and was at Johns Hopkins Hospital in Baltimore starting an intense chemotherapy regime for acute myeloid leukemia (AML). Not only was it not the flu, I was a 27-year-old woman. No one could tell me if the 26-percent survival rate for AML even applied to me.

For months, my life was described in if-then statements.

“If she does this protocol then she might have a chance.”

“If we don’t find any cancer in the biopsy then we know the treatment worked.”

“If her bone marrow starts again then she can go home.”

“If the fever breaks then she should wake up.”

From my days working on Capitol Hill and running the Congressional Women’s Softball Game to support young women diagnosed with breast cancer, I thought I knew enough about how cancer “worked.” I was wrong. I didn’t know anything until after becoming that rare anomaly who was “too old” to be considered a kid and “too young” for adult cancer protocols. I was the outlier on a graph sheet, not a person fighting for her life.

But I’m not alone.

Each year 70,000 Americans between 15-39 are diagnosed with cancer in the United States. We are the invisible cancer population.

The National Cancer Institute reports that adolescents and young adults are diagnosed with cancer six times more than children aged 14 or younger. However unlike pediatric and older adult cancers, improvements in survival rates for patients first diagnosed between 15 and 39 years have continuously lagged behind other age groups since the 1970s when the War on Cancer began.

In 50 percent of cases providers never discuss fertility preservation with cancer patients of reproductive age. Adolescent and young adult survivors too often come out of treatment without the ability to have a child because one conversation never took place.

Adolescents and young adults are the least likely to be enrolled in clinical trials and there are no reporting requirements specific to this age group. Researchers lack the tumor samples and data sets they need to make progress on survival rates.

This is a population more likely to lose health care coverage due to a life transition such as aging off their parents’ insurance or losing their job. These aren’t kids who decide not to purchase coverage. These are Americans who fall into a life-threatening crack within a system designed to provide safety nets to the very young, elderly, poor, and disabled but never the “healthy” young adult.

A cancer diagnosis between 15 and 39 comes with a lifetime of increased medical expenses and twice the lost productivity compared to peers without a cancer history. Recently one nonprofit looked at their young adult grant applicants and found they reported $100,000 less in net worth compared to young adults with no cancer history.

The direct and indirect impact of a cancer diagnosis and treatment are real and debilitating especially for young adults. Cancer is a burden we carry for the rest of our lives.

Where can we begin? For one, we can start with student loans. It’s no small thing and we can make an immediate impact.

Today if you lose your job or are left permanently disabled, you can apply for deferment or relief from interest accruing during a time of financial difficulty. But those protections do not apply to cancer treatment.

Surgeons have developed procedures that prevent the need for a complete amputation. Providers set treatments around work schedules allowing patients to work and more importantly, keep their employer-sponsored health care. A recent report found that approximately 7 million cancer patients and survivors in the United States are currently working.

In June, Representatives Ileana Ros-Lehtinen (R-FL) and Ed Perlmutter (D-CO) introduced HR 2976: the Deferment for Active Cancer Treatment Act. This piece of legislation seeks to do one thing: pause interest from accruing and compounding during active cancer treatment.

No loans will be forgiven or discharged. This bill is not a handout; it is a compassionate gesture that removes a penalty incurred purely because of a cancer diagnosis. It is commonsense and it is good policy. I encourage every Member of Congress to co-sponsor HR 2976, the Deferment for Active Cancer Treatment Act.

Surviving is just the beginning for the invisible adolescent or young adult impacted by cancer. Oncology teams, cancer systems, industry leaders and government bodies all have a role to play by acknowledging that adolescents and young adults can and do get cancer.

It’s time to ensure every American, no matter their age, can survive and thrive after a cancer diagnosis.

This post was originally published on HuffPost.

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