On the morning of April 7, 2015, Bekah Bowman's five-year-old son, Titus, was diagnosed with Batten Disease—a fatal genetic condition, a dark answer to a year's search to explain Titus' mysterious seizures and choking and weight loss. By the end of May, Titus would no longer be able to walk or talk or eat by mouth; he was also blind. By August, Bowman and her husband, Danny, would learn their youngest son, Ely, shared Titus' fate. "There were a lot of really scary things going on," she says. "Never in our wildest dreams did we think we'd be dealing with something like this. We had no idea what we were doing."
Bowman looked for help and was able to access concurrent care, a type of care that wasn't possible in most states before Obamacare, which gave Titus both specialist treatment at the hospital and round-the-clock hospice care. "It gave us the best shot at giving him as much quality of life while we had him here," she says, "and we got resources in our home, so we weren't having to drag him to the hospital all the time, and 24/7 'it's scary at 3 am can somebody come check on him' kind of care."
Before Obamacare, though, families of dying children like Bowman's in all but a few states were heartlessly forced to make an unimaginable decision: Treat or comfort, pursue a cure or respite, fight or accept the end. But the Affordable Care Act in its admittedly larger text contained a small provision, Section 2302, that changed this indefensible policy. As of March 23, 2010, the ACA required state Medicaid programs pay for both; families and kids with terminal illnesses no longer had to pick.
The ACA's concurrent care provision helps solve a longstanding problem in pediatric end-of-life care. "The vast majority of kids who need hospice do not get hospice," says Jessica Keim-Malpass, an assistant professor of pediatrics at the University of Virginia School of Medicine. Research has shown that kids who are dying of AIDS and cancer often go without the support of hospice; Lisa C. Lindley, a palliative care researcher, points out that number may be even less than 10 percent.
It isn't hard to empathize with why: How do you stop treatment for your child, if there might be something, anything else out there? "They had to choose to stop any 'disease-directed treatments,' which might be more chemotherapy, some antibiotics, possibly surgeries, which meant that most parents did not choose hospice at all," says Debra Lotstein, director of the division of palliative care at the Children's Hospital of Los Angeles.
"Having concurrent care has given families real choices," Lotstein says, "to do their best to give their child the best life possible for as long as possible, and to continue to get possibly life- prolonging treatments as well."
Even if Republicans don't repeal the ACA or if they decide to keep the concurrent care provision intact, their cuts to Medicaid may effectively strangle the program for many of the most vulnerable children. Though we tend to think about Medicaid as government insurance for people with low incomes, many children who have seriously complex—and, thus, seriously costly—medical needs are supported by it. One study in California, for example, found that the average spending on these kids was nearly $14,000 per month.
"Though they are a small segment of the population, they are a segment of the population that has some of the highest needs and some of the most costly needs," says Khaliah Johnson, a pediatric palliative care doctor at the Children's Hospital of Atlanta.
Kids with chronic complex medical conditions make up only 5 percent of the total child population in the US, but need around 40 percent of all Medicaid spending on children. Right now, Medicaid flows to states based on need, but if it is capped or block granted, then states will be forced to decide how to spend their limited resources. "States are likely to decrease the number of children eligible for Medicaid if the programs are capped with block grants," Lotstein says.
Repealing the ACA and limiting Medicaid will create a cycle of impossible choices, which are passed from the state to the families, but ultimately end up being suffered by the most vulnerable children—more than 21,000, according to one estimate.
"There is a lot of concern from those among us who are the most fragile, who have some of the quietest, smallest voices," Johnson says. She recalls a recent patient, a two-year-old with leukemia and very severe intestinal bleeding who lived with his mom and two siblings in a trailer park in Georgia. The hospice nurse went to visit them and helped manage his symptoms; they helped him have every best day he could have and made a plan to bring him to the hospital when he was nearing death.
"This is all possible because of concurrent care. Without the support of these services, this child would not have been able to get the care that he needed to address his suffering," Johnson says. "That's the same care we would have wanted any child to have, regardless of their ability to pay. This is one of the core values that we have. We take care of each other, particularly when we are in a place of suffering."