The last thing John and Danielle Parli were worried about when doctors told them a cancerous tumor was wrapped around their daughter Emma’s kidney, liver and heart was how much it would cost to save their little girl’s life.
“My main point was to keep my kid alive,” John Parli recalled of his now-7-year-old daughter’s diagnosis with Wilms tumor last May. “I’d live in a cardboard box as long as I’d have to, as long as I had my kid.”
After treatments and surgeries stretched on for months, both parents took leaves of absence from their full-time jobs to care for Emma, while trying to keep life as normal as possible for their three other children. As medical costs piled on top of the mortgage, utility bills and other living expenses, Emma’s disease quickly transformed the middle class, dual-income family into one wondering how it would make ends meet.
“Life was normal, then suddenly, you’re driving down the road and you get a flat tire from a ginormous bump and life stops,” said John Parli, who tried to cash out his retirement savings but learned there would be costly penalties. “People plan for retirement, but they don’t plan for cancer. … It’s kind of terrible when you start taking your kids’ savings account and paying the electric bill.”
In an age with more targeted and successful — but also most costly — cancer treatments than ever, and health insurance policies often requiring more contributions from patients , the Parli family’s struggle highlights a troubling reality: that treating the disease sometimes means going broke.
The problem is so prevalent that advocates have given it a name, cancer-related financial toxicity, and have formed organizations and begun collecting research to underscore to the medical community, drug companies and politicians debating the funding of Medicare and Medicaid just how much families in the throes of cancer need financial help.
In doing so, advocates say they hope to help take the shame out of cancer-related financial toxicity so that patient families can connect with many charitable organizations offering assistance, from taking over mortgage payments to remembering birthday cakes for patient siblings.
Experts say raising awareness is about more than saving money; it’s also about saving lives. More than a third of cancer patients report not completing chemotherapy and other medical treatments because of financial hardship, according to data cited by Family Reach, a Boston-based nonprofit that is partnering with 350 hospitals across the country to offer cancer patients training on how to address the financial upheaval after cancer.
“When we talk about (cancer-related financial toxicity), we talk about financial barriers,” said Carla Tardif, CEO of Family Reach. “We want the world to know that this is more than an inconvenience. This is affecting survival rates.”
While expensive treatments for cancer are not a new phenomenon, the advent of medical technology since 2000 has made options dramatically more costly. During this time, scientists began using genomics to develop complex drugs designed for specific illnesses. Such approaches were medical breakthroughs, but they also involved research, production and clinical trial expenses for much smaller groups of patients, according to Dr. Leonard Lichtenfeld, deputy chief medical officer for the American Cancer Society.
Today, it is not unheard of for a cancer drug to cost $500,000 for a year of treatment — a price tag that doesn’t include the cost of medical care needed before administering it, Lichetenfeld said.
Further complicating things is that some expensive cancer drugs now have uses far beyond what they were used for initially, in turn, leaving stakeholders such as pharmaceutical companies, policymakers and advocacy groups including the Cancer Action Network and the Professional Patient Advocate Institute without clear guidelines for what drugs should cost, whom should be eligible and how charitable organizations can help.
In other words: More people may be eligible for the drugs, but who should pay for patients to receive them? And with what limits?
“What really concerns me is that these drugs are going to take on an even more prominent role as more and more patients become eligible to receive these treatments,” Lichtenfeld said. “This is a topic coming, God forbid, to someone near you soon.”
Lula Moore, 64, of Chicago, knows firsthand how distressing it can be to face cancer with little money.
In 1999, Moore was diagnosed at West Suburban Medical Center in Oak Park with breast cancer that would require a lumpectomy and chemotherapy. Without a job or health insurance at the time, Moore wondered how she’d pay to save her own life.
“It was really kind of devastating and embarrassing,” said Moore, whose treatments were eventually paid for by a collection of nonprofit organizations geared to help cancer patients without means. After surviving cancer, Moore started her own nonprofit called Sisters Embracing Life, which today sponsors families of cancer patients, offers support group meetings and a food program.
“I’m just trying to get people to understand that cancer is not a death sentence,” Moore said.
Some hospitals in recent years have begun hiring staff specifically to help patients navigate the complicated costs associated with cancer. At the Cancer Center at Rush University Medical Center, a designated counselor works to help patients understand what is covered through Medicaid, Medicare and private health insurance.
Medicaid patients, who qualify for health care because of low income or disability, typically have the most coverage. Seniors on Medicare are covered to varying degrees, based on whether they have Medicare Part B, or other secondary insurance. And patients with their own health care through private insurance have a wide range of coverage depending on the provider and the treatments needed, said Marie Duval Macke, practice administrator for the Cancer Center at Rush.
“I think it’s challenging for everybody,” said Macke. “They’re so grateful. We get so many different comments about ‘I wouldn’t have been able to do this without you.’ ”
To further encourage these conversations, Family Reach has created a handbook designed to help patients dealing with cancer to think through potential financial challenges, identify roadblocks and know where and how to seek financial support., Tardif said.
Social workers at Lurie, where Emma Parli is being treated, use the Family Reach curriculum to help cancer patients and their families create spreadsheets, budgets and use other controls that will help them to cope during the already trying time.
“I always tell families it’s not because I’m nosy and I’m not trying to be all up in their business, but I just recognize that those financial consequences of treatment are real,” said Anna Nannicelli, social worker of oncology at Lurie.
Lichtenfeld, of the American Cancer Society, said many more conversations and policy decisions must take place before cancer-related financial toxicity will be under control. But he’s encouraged to see that the topic is now out of the shadows.
“We, as a society, have a responsibility to those among us to be able to get them the care they need at the time that they need it,” Lichtenfeld said. “This is an important topic that’s worthy of discussion.”
A year after her diagnosis, Emma is back at home with her family and on her way back to health. Danielle Parli’s job as an accountant offered health insurance that covered the bulk of the medical expenses, including radiation treatments, for which the family received an insurance bill for $18,000. Danielle Parli has since returned to work, while John Parli, a freelance photographer, remains on leave.
But during months off without pay, the family used up savings to cover medical co-pays and other bills. A few months after Emma’s diagnosis, they did not have enough money in their bank accounts to pay the mortgage.
Emma needs physical therapy several times each week to regain her mobility — sessions the Parlis decided to scale back recently because the $45 co-pay was becoming too costly. Although the family has resisted the suggestion of holding a fundraiser, they are grateful for other contributions they’ve received, including free lodging near Lurie Hospital from the Ronald McDonald House, Christmas presents from groups such as Cal’s Angels, a nonprofit based in St. Charles, and two months of their mortgage paid for by Family Reach, John Parli said.
“It was one less thing for me to worry about,” John Parli said. “In the scope of things, I had one place to be, and it wasn’t anywhere else than next to Emma’s bed.”