RALEIGH — After spending at least $200,000 — he says he stopped counting around there — Bob Damelio went bankrupt trying to pay for Applied Behavior Analysis therapy for his autistic son, Christopher.
Now he is fighting along with a multimillion-dollar nonprofit to make North Carolina the latest state to mandate health coverage for the therapy, which autism advocates say is scientifically validated and necessary, but insurance companies say will inflate already high medical costs.
Damelio is one of thousands of volunteers across the country working with Autism Speaks, a national nonprofit based in New York City; founded in 2005 by former NBC Universal Chairman Bob Wright. The $55 million organization has led the effort to get ABA, a type of repetitive conditioning therapy that helps one adopt new, useful behaviors and reduce those that cause harm, covered by state-regulated health plans across the country.
“What families needed most is a way to pay for treatments doctors were prescribing,” said Lorri Unumb, who works on state-level advocacy for the group.
The N.C. House passed a bill last year, championed by House Speaker and Republican U.S. Senate candidate Thom Tillis doing just that. Tillis’ district, which includes parts of Mecklenburg County, is home to several NASCAR shops and the racing franchise is a big supporter of Autism Speaks, dedicating its annual Dover FedEx 400 race in Delaware to benefit the organization.
In 2012, Autism Speaks spent $2.5 million on lobbying efforts across the country including advertisements, and meeting with state government officials and currently has five lobbyists registered at the General Assembly.
Unumb said most of the money Autism Speaks raises goes back into funding scientific research to find a cause and a cure for autism. ABA therapy has been vetted in multiple studies as a legitimate medical treatment that is the most-prescribed and one of the most effective early intervention tools, according to the group. It can change the life trajectories of children with autism and lower overall health care costs down the road, she said.
Autism Speaks says their bill would not significantly raise health insurance premiums for businesses. Blue Cross Blue Shield says it would. Both cite conflicting research.
But Blue Cross and Blue Shield of North Carolina, the largest health insurer in the state, has its own lobbyists working against the bill in the General Assembly. Lew Borman, a spokesman for the company, says the company already covers a range of physical, occupational and speech therapies with no limitations on doctor’s visits. Borman contends that there is no conclusive proof that ABA is a medically necessary treatment and is done in an educational setting. There are already 55 mandates for health insurance on the books, another one would just exacerbate already high costs, Borman said.
“The rising cost of medical care continues to be a major issue for both employers and customers,” he said. “No matter how well intended, the result is an increased cost for all members that comes in the form of increased premiums.”
The House plan would only apply to state-regulated health plans, which make up about half of the plans in the state, according to Autism Speaks. Self-funded plans run by larger companies or plans governed under the Affordable Care Act would not qualify. The bill also allows small businesses to opt out their premiums increase more than 1 percent over 12 months and says that ABA providers must be regulated by the state.
Sen. Tom Apodaca, R-Henderson, who manages the flow of legislation in the Senate, said last year that he would take up the bill this Spring, according to Unumb. But there has been no sign autism will make it to the floor with only a few weeks left of the session.
But last month the State Health Plan Board of Trustees voted to expand coverage for ABA to state employees, which could include legislators.
“Lawmakers do, or ought to feel additional pressure (to pass a bill),” Unumb said.
The House plan would cap coverage for ABA therapy at $36,000 per year and only children who are covered under state-regulated plans and who were diagnosed before age 8 would be eligible. The coverage for the therapy would stop at age 23.
Damelio’s son did ABA therapy as a child but hasn’t had it in years. Now, with both some progress and setbacks with his autism, he’s starting high school in the Charlotte-Mecklenburg Schools district.
“We couldn’t afford to do it anymore, that’s a hard decision for a parent to make,” he said. “You’ve got to spare one child for the other child? We shouldn’t have to sit at the table and decide: do we sacrifice one child for the other? That’s what we’re doing when we don’t get any help.”