Sunday, 7 Aug 2022

Opinion | It’s Hard Enough to Have a Child With Cancer. It Shouldn’t Crush Families Financially.

My infant daughter was diagnosed with a brain cancer nearly a year ago. She endured several surgeries and horrific side effects from her chemotherapy, which ultimately took her life on Christmas Eve. And yet, my family was one of the lucky ones.

We had ample savings and excellent health insurance. Our employers mostly continued to pay us. Though the total tab for her four-month battle came to a staggering $1.8 million, insurance covered most of our hospital bills.

We were also able to raise over $100,000 from friends, family and many kind strangers through crowd funding. That cushion went to cover the many costs that even excellent insurance doesn’t. It allowed us to move from New York to Boston, to rent a large minivan to transport all of our belongings for an exorbitant $1,000 for one way. It covered our $4,000-a-month furnished apartment — the cheapest option we could find available within walking distance of the hospital where we lived while our daughter got world-class treatment from a brain tumor expert.

The vast majority of childhood cancer families have a very different experience. On top of the earth-shattering news that their child has cancer, they must struggle with the financial burden incurred by trying to keep their kid alive. Many lose at least one parent’s income. Some eventually file for bankruptcy. Others have their utilities shut off.

Lawmakers on both sides of the aisle are proposing various ways to lessen that burden — including providing tax credits for family caregivers, letting the parents of a child with cancer take paid parental leave for an extended period of time, and making it easier for children with cancer on Medicaid to get treatment in another state.

Action can’t come soon enough. Doctors have improved survival rates for some types of childhood cancer in recent years, but it remains the No. 1 disease-related killer of children. Meanwhile, while all our children experience different types of cancers and treatments, the financial strain is nearly universal: A 2018 National Children’s Cancer Society survey of 449 families found 95 percent said their child’s cancer caused a financial burden on their family. A 2009 study in the American Journal of Medicine found that 14.6 percent of medical bankruptcies were caused by the illness of a child. Other studies have shown that children of poorer families have worse survival rates and higher rates of early relapse.

A 2018 survey of 1,743 families by the American Childhood Cancer Organization found that over 75 percent of respondents said they either left work or had to cut back work hours to care for their child during treatment.

Many families in the tight-knit childhood cancer community have relayed similar stories to me. Moms have stepped away from their careers for months — or years — to care for their child full time. Others are forced to keep working, lest they lose their family’s insurance. Families max out credit cards and go into debt, just to give their child the best chance of surviving.

Auburn Curry, whose son is battling leukemia in Kentucky, was fired when her unpaid medical leave ran out. “I got a cold call from H.R. that said, ‘You’re terminated effective immediately and all your benefits expire at midnight.’ We went from 50K a year to zero,” Ms. Curry commented on my Facebook post asking parents about their struggles.

It doesn’t even end with death: Families also regularly are forced to crowd fund their children’s funeral costs. One mother, Emma Lipnicky, told me she left the hospital after her daughter died to find their family had $3000 in parking fees.

For those whose children do survive, immediate and lifelong challenges related to their cancer and treatments are a continued financial burden. Even with insurance, parents will often then face tens of thousands dollars in out-of-pocket medical costs related to physical, speech, and emotional therapy.

“My wife left her job to care for our son full time while he was in treatment. Some fund-raisers hosted by friends and communities helped, but we ended up leaving treatment with debt,” Tym Rourke, whose son survived brain cancer, explained to me on Facebook. “However, our story is the unending financial strain that goes with survivorship. We’re 15 years from diagnosis, and this year we’ve had over $4,000 in out-of-pocket costs for my son’s ongoing medical care,” he said. “It’s never ending. The financial burden of treatment and survivorship can be lifelong, and as my son gets older I fear his own economic mobility will be hampered by his own costs.”

Recognizing those costs means also finding legislative solutions to ease the burden.

The Family and Medical Leave Act policy — passed all the way back in 1993 — hasn’t really budged in over 25 years. It offers certain employees 12 weeks of unpaid leave, and a guarantee of one’s job. But unpaid leave is not an option for all families.

“Everyone should be fortunate enough to know that if their child is diagnosed with a life-threatening condition, that our country has their back; that’s the least of what we should do,” Sen. Patty Murray, a Democrat, told me. Murray hopes to increase family leave nationally from 12 weeks of unpaid leave to 12 weeks of paid leave — thus allowing families to care for their child full time at the beginning of their treatment without worrying about lost income.

Another proposal working its way through Congress with bipartisan support, the Credit for Caring Act, would provide a nonrefundable tax credit of up to $5,000 that could benefit parents who become caregivers for their sick children. The tax credit could be used toward transportation, home modifications to accommodate a family member, medication management services, and training or education for the family caregiver.

For families on Medicaid, bipartisan legislation also hopes to make it easier to move to a new state for medical care, removing the burdensome red tape required to receive care in a different state under a different Medicaid plan.

Our financial burden was easier than most. The money left over from our crowdfunding we donated to childhood cancer organizations, including our own fund for childhood cancer research, the Team Beans Infant Brain Tumor Fund housed at Dana-Farber Cancer Institute.

I will carry the pain of Francesca’s loss with me for my entire life. But I was one of the lucky ones.

Andrew Kaczynski is an investigative reporter and founder of CNN’s KFile Team.

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