State Rep. Dennis O'Brien, Speaker of the House and thus one of Pennsylvania's most prominent legislators, has a nephew with autism, and sits on various boards and caucuses supporting autism research. It's why autism treatment advocates viewed his elevation to the speaker's chair last year with such optimism.
And soon, they hope, that optimism will be rewarded with a state law that mandates a basic level of health insurance coverage for children and young adults with the disorder, whose symptoms include a variety of sensory, language and social interaction difficulties. The expanded coverage would force insurers such as Pittsburgh's Highmark Inc. -- and every other insurer operating in the state -- to pay for more classes and treatments that help autism patients learn social skills.
That would be good news for parents of autistic children, some of whom, in the absence of insurance coverage, shell out ten of thousands of dollars annually out of pocket, in the hopes that the treatments will provide behavioral improvement; there is no autism "cure," though.
Business groups are resistant, worried about the premium increases that will come along with a mandated expansion of insurance coverage. Estimates on the impact of the blow vary -- House advocates say the new mandates might add 1 percent to insurance costs in Pennsylvania, while business groups are estimating a 2-6 percent hit, intolerable, they say, in a time of ever-increasing health care costs.
"We are concerned about additional mandates in general," said Lesley Smith, spokeswoman for the Pennsylvania Chamber of Business and Industry. The opposition "is not aimed at a specific illness or disease."
Insurers are a mixed bag -- the Blues have been cooperative in providing feedback on the bill, but not necessarily supportive of paying for the additional coverage. National, for-profit insurers have been less supportive still, concerned that action in Pennsylvania could lead to mandates in other states.
But already, such laws exist -- South Carolina requires autism coverage, up to $50,000 annually, for kids 6 and younger. Texas mandates treatment for kids 3 and younger, with no monetary cap on the bills. Pennsylvania, meanwhile, wants to mandate broad autism coverage, up to $36,000 a year until the age of 21.
Progress on the autism bill -- House bill 1150, which sailed out of the House last summer but is stuck in the Senate -- has been molasses-like, as is the case with many of thousands of bills that are considered by either chamber in a given session. But Mr. O'Brien, in recent statements, has said he is encouraged by the Pennsylvania Health Care Cost Containment Council's January decision to form a panel to review the cost-effectiveness of mandating autism coverage.
The PHC4 has asked for bidders from firms or research institutions that will do the heavy data-sifting for them. The report could be completed by July 3, at the earliest; the research panel should be selected next in March, said Joe Martin, spokesman for PHC4.
Mr. O'Brien, meanwhile, is hopeful that the Senate will vote on the House bill around that time, said his spokesman, Bill Patton. That's because state's budget year ends June 30. And the autism bill is "very likely to be a subject related to the budget discussions," Mr. Patton said. (Last year, for instance, Mr. O'Brien was able to secure millions for autism research as a part of the budget negotiations.)
"But it's not explicitly a budget issue," so the matter could also wait until the autumn, which marks the end of the two-year legislative session. If nothing is approved by then, the issue waits until the next session -- at which point, there is no guarantee Mr. O'Brien will still remain House speaker.
Mr. Patton also said that the Senate doesn't have to wait until the PHC4 returns its survey to vote on the House bill. But it's likely that the Senate will do just that, said Joe Pittman, chief of staff for Indiana County Republican Sen. Don White, who chairs the Senate's banking and insurance and committee (where the bill now rests, awaiting disposition). While the autism advocates are passionate, so, too, are the people advocating coverage mandates for Lyme disease testing or colorectal screening, which are used to detect colon cancer.
"It's a balancing act," Mr. Pittman said.
In any event, autism advocates are tired of waiting. It's been three years since the Pennsylvania Autism Task Force released its thousand-page manifesto, saying that Pennsylvania is doing a poor job in treating its thousands of autistic children.
"Sen. White claims that he is interested in seeing the bill pass, but actions speak louder than words," said Cindy Waeltermann, director of the Autism Center of Pittsburgh. "And I'm not seeing any action."
Highmark, for its part, is worried that the law would require payment for treatments that are unnecessary. On a case-by-case basis, Highmark already pays for speech therapy and certain classes if medical evaluators have a "reasonable expectation" that the patient will show measurable improvement (and if such coverage is a part of that customer's insurance plan.)
"The concern is that, the way the bill is structured, we may be compelled to cover treatment that is maintenance," rather than treatment that gives a patient a good chance at improvement, said Dr. Virginia Calega, of Highmark's medical management and policy team.
Moreover, the bill does not apply to the many companies that are self-insured, whose claims are processed -- but not paid for -- by big insurers.
That means autistic children whose parents work for one of these companies might not see any difference in coverage. "If it's being positioned that it's going to help all children, that is not accurate," Dr. Calega said.