Raleigh, N.C. — Dozens of children with autism and their families converged on the legislature Tuesday, urging Senate leaders to vote on whether to require insurers to offer better coverage for the disorder.
In May 2013, the House approved a proposal that would require insurers to cover applied behavior analysis, or ABA, a widely accepted therapy that advocates say is one of the best early intervention techniques for autism, saving the state millions or billions of dollars in later treatment costs.
The legislation, House Bill 498, has been sitting in the Senate Insurance Committee ever since. Senate leaders say they're wary of adding any additional mandates to health insurance.
House lawmakers tried again this year by adding the language to a regulatory reform omnibus, Senate Bill 493. But Senate leaders sent that proposal to their Ways and Means Committee, which almost never meets.
Autism is more prevalent in North Carolina than nationally. According to the group Autism Speaks, the organizer of Tuesday's event, one in 58 children in the state had some type of autism spectrum disorder in 2010, compared with one in 68 nationally.
Thirty-seven other states have enacted laws requiring coverage of ABA since 2001, as mounting evidence has shown the therapy's effectiveness. North Carolina is one of the few states that doesn't currently require coverage.
Under the legislation, the child must have been diagnosed by the age of 8. The treatment must be determined to be medically necessary by a psychologist or doctor. Providers would have to be licensed and regulated by the state, and the cost of the treatment cannot exceed $36,000 per year.
According to Autism Speaks president Liz Feld, adding ABA coverage has added only an average of $3.72 per year to insurance premiums in states that require it.
She said North Carolina's largest insurer, Blue Cross Blue Shield of North Carolina, has been giving Senate leaders "bad information," overestimating the likely cost of the change.
BCBSNC says Feld and other advocates are cherry-picking their data. "This is a misleading figure based on incomplete data from only a handful of states. In fact, the mandate could cost millions," responded CEO Brad Wilson.
In an open letter to Feld, Wilson said the North Carolina Chamber of Commerce and other business lobbies also oppose the change.
"When we discuss the 'most vulnerable' in our state, we must recognize the families and small businesses are already struggling to afford their health insurance. They simply can't afford additional health insurance mandates at this time - no matter how well intentioned those mandates might be," Wilson said.
Feld said her group compiled its numbers from actual claims in states that require the coverage. Much of the data was provided by Blue Cross, she said.
"Don't buy it," Feld urged Senate leaders. "Stand up for these families."
On stage in the third-floor legislative auditorium, Feld was surrounded by families wearing blue T-shirts that read, "Keep Calm and Shine On." Many of the children were dressed in royal blue super-hero capes.
Families like these have been a regular sight at the legislature this session, asking senators to reconsider blocking the bills. Feld said the proposal has been in the works for six years but has been sent to one study committee after another despite advocates' best efforts.
"It is absolutely outrageous that these families should have to come three hours on a bus to beg for a vote," she said. "Please don't go home for the summer without providing autism coverage for the families here and for 60,000 people across the state of North Carolina."
House Speaker Thom Tillis has been an outspoken supporter of the legislation, as have many other members of the House leadership. But with relations between the House and the Senate frostier than they've been in a decade, that may not help the bill's chances.
Feld implored lawmakers not to allow children with autism to become "mired in politics."
"Bring this bill up for a vote," she urged. "There is nothing political about autism."
The State Health Plan, which covers some 670,000 people in North Carolina, recently voted to add ABA coverage as of Jan. 1, 2015. After an extensive cost analysis, managers for the plan, which is administered by Blue Cross, say the additional coverage will not require a premium increase next year.