In a matter of a few months, Patricia Kweedor was dealt two powerful blows: first, she unexpectedly lost her husband. Then she saw her son get diagnosed with acute lymphoblastic leukemia (ALL).
Within a couple months of his diagnosis, Kweedor was already struggling to make ends meet. She could hardly work because of the attention her two sons needed, and money had already been tight before her husband passed away. Now, though, she was struggling to do the basic things such as put food on the table or provide transportation for her son Josh to get to the hospital for his treatment.
Fortunately, Kweedor had Joseph Chabot to lean on. Chabot is the director of the Pediatric Resource Program at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, and he helped her make rent each month, get to the hospital, and even buy back-to-school clothes while her son went through cancer treatment.
"If I didn't have my friends at Dana-Farber, I don't know what I would have done," Kweedor told A Plus. "They were like my family."
After two years of treatment, Kweedor's son is cancer free and back in school. But the financial struggles continue, as they do for most families who encounter cancer. One in four families that have children diagnosed with cancer lose 40 percent of their income, a catastrophic loss that sends 15-20 percent of families into poverty.
The good news is that, right now, the United States is pretty good at treating childhood cancer. The better news is it's about to get a lot better.
Thanks to new research led by Kira Bona, a pediatric oncologist at Dana-Farber/Boston Children's, one enormous flaw has been found in the treatment of patients with childhood cancer: how socioeconomic status changes the health outcome of a cancer patient.
Dr. Bona's initial goal was to understand the way poverty impacted childhood cancer outcomes, primarily relapse from cancer treatment and the rate of death. Of the 15,000 children who will be diagnosed with cancer in the United Stats this year, about 80 percent will be cured. That's a major advancement in treatment that we've seen over the last 50 years.
"The flip side of that is that 1 in 5 children with cancer will die of their disease," Dr. Bona told A Plus. "That is far too high a number if you're a physician or a parent caring for those children. That's the impetus of all the research that we do and certainly for mine."
Going into their studies, which were funded in part by The Pablove Foundation, Dr. Bona and her team knew from general pediatrics that children who come from low-income homes or high-poverty areas are more likely to be in poor health, have an infectious disease, and be hospitalized. What they were unsure of is how those same children do against cancer.
Thankfully, pediatric cancer is pretty rare. Because of that, children with cancer tend to be treated at large academic medical centers and during a clinical trial. In other words, kids receive very standardized care, which lets medical professionals operate under the assumption that their high-quality care corrects for the impact of poverty. The reality, though, was that they never really looked.
First, Dr. Bona's team studied more than 500 children treated for ALL, the most common pediatric cancer. All of the children were treated in clinical trials at major academic programs across the country. When the researchers looked at those children who experienced a relapse of their ALL, they found that those children living in high-poverty areas were much more likely to suffer an early relapse than other patients.
That research made it clear to Dr. Bona that defining, understanding, and tackling poverty-related relapse would be an important part of improving not just pediatric cancer treatment, but potentially pediatric diseases of many kinds.
Through a survey-based study, her team went on to find that about 20 percent of families had food, housing or energy insecurity in the prior six months of their cancer diagnoses. That was unsurprising, as about 20 percent of Americans experience those insecurities. What was surprising was that just six months later, that number had risen to thirty percent, meaning treatment wasn't just going less well for families in poverty, it was also putting families into poverty.
Realizing the prominence of this issue was both saddening and exciting: on one hand, it seems unacceptable a child fighting cancer would have to face these insecurities at home. On the other hand, it meant that the research they were doing was valuable and could have widespread implications.
While they don't know exactly what interventions will work, that is the next step. They do have preliminary ideas: adaptations in care delivery, screening for food insecurity, universal provisions of gift cards to supermarkets so families can access quality food, figuring out how to deal with high cost of transportation or making sure families have access to a working vehicle for midnight trips to the emergency room, free parking passes, and so forth.
"I would argue that even if we have perfect diagnoses, perfect targeted therapies, none of that is good enough if we can't successfully get the drug into the child or successfully get the child supportive care," Dr. Bona said.
Part of that care is that kind that Chabot gave to the Kweedor family. Helping make ends meet with her and assisting in her transportation needs was an important part of her son's treatment. Dana-Farber/Boston Children's was able to do that through funds that came in from donors and philanthropic organizations. With more research, though, they could allocate those funds in the most appropriate ways to improve health outcomes for patients.
Of course, many of those funds used by Chabot and similar social work-type programs have to abide by federal guidelines. With so many options for help and hurdles to get through, having people like him around can really lessen the burden for a family facing pediatric cancer.
"One of the most important things that I see is having people like us that know the resource world and know what's out there and what the guidelines are is a huge help to our families," Chabot told A Plus. "Expecting a family who has a very sick child to navigate this on their own is very difficult."
During Chabot's work, he's also come to face to face with the reality of just how important Dr. Bona's research is. On one occasion, he remembers a single mother whose child needed a bone marrow transplant — a treatment worth about a half-million dollars if not more. After being admitted to the hospital, they came to learn that the mother was homeless.
To Chabot, it's incomprehensible that through all the medical screenings and work done with a patient, there wasn't enough screening of the family to find out they were homeless. Now, though, with Dr. Bona's research and institutions such as the American Academy of Pediatrics recommending all pediatricians screen for poverty, a greater emphasis on addressing a family's socioeconomic needs in treatment could mean greater outcomes for patients.
"I can say enthusiastically that I think our field as a whole is absolutely in a position to further improve our outcomes and improve that residual 20 percent mortality rate," Dr. Bona said. "I have no doubt about that and I really fiercely believe that this work can contribute to that."
A Plus is proud to announce that we are partnering with The Pablove Foundation during September and that we'll be releasing stories featuring Pablove and its work throughout the month. Its mission? To fight childhood cancer with love.
Support Pablove and childhood cancer research by "going steady" and giving monthly. Learn more about the campaign and the cause here.
Cover photo: Wikicommons