RALEIGH, N.C. (AP) - 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 doctors 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.
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Autism lobby fights for coverage mandate