A bid from parents and doctors to require more coverage of an expensive autism treatment was defeated Thursday after insurance companies and businesses opposed the mandate’s cost.
Over two hours of testimony and debate, a range of supporters told lawmakers that “applied behavioral analysis” therapy, or ABA, was the best way to treat many young children with autism.
"Research tells us that when comprehensive ABA therapy is provided at the prescribed intensity, up to 47 percent of individuals will be able to mainstream into a regular first grade classroom without an aide," said Dr. Daisha Seyfer, a developmental behavioral pediatrician at Sanford Health.
Parents testified about how ABA treatment had made a huge different in their children’s behavior. Michelle Powers of Brookings said her daughter’s autism made her act “out of control” with daily outbursts. After seven months of prescribed ABA treatment, the outbursts had become less severe and less frequent — once a week instead of daily.
But the same thing about ABA therapy that experts say brings results, its intensive nature, also makes it expensive. A full load of ABA therapy involves up to 40 hours of treatment per week, and can easily cost more than $100,000 per year.
That means few families can afford it, but also that insurance companies don’t want to fund it.
Avera is the only health plan in the state to currently cover ABA. Some parents received payment for ABA therapy from Wellmark, but the company says that was a mistake due to imprecise billing. In January, it notified families it would no longer be covering ABA — which brought those families to the Legislature.
Jana Johnson, a doctor and a mother of a child with autism, complained that if autism could be treated with surgery or a pill, insurance companies would cover it in a heartbeat. It’s only behavior therapy, Johnson said, that they balk at.
Rep. Scott Munsterman’s bill required some health care plans to cover ABA therapy and other autism treatments. Around 60,000 to 90,000 citizens would be affected — primarily those who get their coverage from larger employers, and those with smaller plans that have been grandfathered in under the federal Affordable Care Act. Small business insurance plans and non-grandfathered plans on the individual marketplace would would not be affected.
Munsterman originally proposed to require all plans to cover ABA therapy. But under the Affordable Care Act, states that impose new coverage mandates on insurance companies are required to pay for that cost. To dodge a budget battle and weaken opposition from Gov. Dennis Daugaard, Munsterman narrowed the bill to apply only to those plans the state wouldn’t have to pay for.
But insurance plans said they shouldn’t have to pay for expensive treatment, which they said would force them to pass costs on to customers in the form of higher premiums.
"Many South Dakotans are increasingly concerned about their ability to afford health insurance," said Darla Pollman Rogers, a lobbyist for Wellmark Blue Cross Blue Shield of South Dakota. "We share that concern and we encourage legislators to carefully scrutinize proposed legislation that might in any way increase costs."
Wellmark previously estimated it might cost as much as $7 per member per year more to cover ABA treatment for everyone, but said the actual figure was probably higher.
Pollman Rogers also argued that ABA therapy was experimental and unproven compared to other, less expensive therapies. Studies show ABA isn’t helpful “in all cases,” Pollman Rogers said, arguing for more research.
That contradicted Seyfer’s testimony, and a list she provided of 26 different scholarly articles she said backed up the effectiveness of ABA therapy.
State Sen. Dan Lederman criticized the bill’s supporters for not finding a compromise with insurance companies. He also said he was hesitant to support a measure when the two sides disagreed on the facts and figures.
The Senate Commerce and Energy Committee voted 5-2 to kill the bill, with Sens. Ryan Maher and Angie Buhl O’Donnell opposed.
But supporters aren’t giving up. Munsterman is looking at ways to bypass the Senate committee, which could include sticking the autism language into another bill. That showdown will likely come on Monday.