Should Health Insurance Cover Services for Autism - an Ethical Analysis

A whole course in health system ethics could be built around the issues raised by an article in yesterday's Boston Globe about insurance coverage for autism services. I've taken four slightly altered snippets from the article and followed them with comments (in italics):

1. "The nation's largest autism advocacy group, Autism Speaks, is planning a legislative push in 20 states, including Massachusetts, to require private insurance companies to pay a portion of the intensive, expensive educational treatments that many medical professionals say are a child's best chance to overcome, or just learn to cope with, profound and lifelong developmental and learning disabilities."

In a democratic society advocacy groups like Autism Speaks play the crucial role of organizing and amplifying individual interests into a voice that can be heard in the political arena. The fact that the services being requested are expensive will cause headaches for program managers, but autism is a serious impairment, and advocates can make a legitimate claim that a just society will not make access to services contingent on the wealth of the individual family. But it isn't yet clear whether society's obligation belongs in the health sector.

2. "'If my son couldn't hear and needed a cochlear implant, we wouldn't be asking the school system to take responsibility,' said Jack's mother, Judith, coordinator of the New England lobbying effort for Autism Speaks. 'As a society, we have to acknowledge that autism crosses a line from an educational issue to a medical one. Jack was diagnosed by a neurologist, not a schoolteacher.' [Another parent added] 'we are talking about medical treatments prescribed by medical doctors, and covering them like any other medical treatments.'"

This argument is rhetorically powerful, but flawed. The fact that a physician makes the diagnosis doesn't tell us what social sector should be responsible for responding to the need. A physician may correctly diagnose arthritis and prescribe exercise in a warm swimming pool. The exercise may help tremendously, but that doesn't mean that health insurance must provide the pool or pay for access.

3. "But private insurers are balking at the proposed requirement, especially coverage of applied behavior analysis programs, which involve a weekly regimen of more than 30 hours of intense, often one-to-one, positive reinforcement techniques for teaching children how to speak, play, learn, and function in the world. They say applied behavior analysis programs are relatively new and unproven, and not effective for all children. ABA teachers are not licensed in many states, and insurers contend that the therapy system is still too new to be regulated sufficiently...But parents of autistic children are determined to get their youngsters into programs that offer even a glimmer of hope."

If I had an autistic child I too would want any service that offered a glimmer of hope. But societies must set standards for how strong the evidence for that glimmer is. The judgment requires empirical analysis - what do we know about the effectiveness of the intervention? But the judgment also involves value judgments - how strong must the evidence be? how much benefit must the intervention offer?

But if what the article cites is all insurers are saying, it is just a matter of time until some form of behavioral education comes under health insurance, since there will almost certainly be techniques that will be shown to provide benefit. I want to see children with autism have access to effective rehabilitative services, but I'm not at all convinced that the service belong in the health sector, as opposed to the education sector.

4. "Requiring insurers to pay for educating autistic children would 'drive up costs for everyone, said Dr. Marylou Buyse, president of the Massachusetts Association of Health Plans...Paul Andrews, director of government services for the Massachusetts Association of School Superintendents [said] 'Special-needs costs have escalated so high that it has reduced the amount of funding we can spend on regular education.'"

These comments show something fundamental about the health sector. There is no budget! If we add autism services, costs go up. But unlike health, the school system has a budget. If we add autism services, something has to come out. Some people argue that health is "priceless" and costs should not be considered. But that view is misguided ethics and faulty facts. Health is tremendously valuable. But it's not the only value. And we know that for every 1% increase in health care costs (the impact advocates say providing autism services would have) 150,000 people lose their health insurance. Legislators who vote to mandate new coverage that will "only" increase costs by 1% should recognize that while they are providing benefit for one group through the mandate, they are harming another group, who will be pushed out of the insurance system.

Autism advocates are smart to push for coverage under health insurance, since unlike education, the health sector currently has no explicit budget, so the cost of adding new expenditures is hidden, as in the form of an ever increasing population without insurance. At some point we will have to wise up and set budget limits for health care, the way we do for every other sector of society. At that point advocates, whether for autism or a new cancer treatment, will have to argue that their services are of such value that they should take funds away from other services. Arguments of this kind are volatile and painful, but we will have to have them.

My guess is that behavioral treatments will ultimately be shown to produce significant improvements for children with autism. I certainly hope so. In terms of managing our societal resources, I think these interventions should be part of the education sector. I'll be prepared to support increased taxes for education if that's what it comes to.