Autism therapies and insurance - IACC discussions

One of the most shocking (to me, at least) presentations at yesterday’s IACC detailed the status of insurance coverage for autism behavioral therapies around the country.  Peter Bell of Autism Speaks presented a number of charts that showed a mix of hopeful and disturbing news.

On the hopeful front, he showed a chart of states that have passed legislation making autism therapy a medical treatment, as opposed to mental health counseling, which gives better coverage through private insurance plans.

Yet at the same time he highlighted the extreme differences between individual insurers within some states.  Even now, one family on a street can have a kid receiving 40 hours a week of therapy where a family two doors down has a kid who gets next to nothing, do to different employer insurance policies.

That is a disparity we should continue working to eliminate.  As he said, we’ve come a long way.  Five years ago, almost everyone was in the same boat, with no coverage.  Now quite a few people have some coverage, but “quite a few” and “some” are not words a progressive society should be using when it comes to autism interventions that are life changing.

Unfortunately, there was more. Peter went on to cite a few states whose programs have denied behavioral therapies on the grounds that they are “experimental” or “not proven to work.”   I thought we were past that kind of shabby behavior.  I guess not.  I immediately opened a dialogue to discuss how that could happen.

When a new drug is developed, the Federal government (via the FDA) reviews test results and approves it to treat certain conditions.  We’ve all heard how vital FDA approval is to the success of drugs.  That’s because the FDA stamp of approval means the drug will be accepted as a legitimate treatment for the conditions it’s approved for anywhere in the US.  An insurer cannot decline it as experimental unless it’s prescribed for something outside the range of its FDA approval.

I was shocked to hear that there is no analogous mechanism for approving behavioral therapies in this country.  As NIMH Director Tom Insel explained, in the absence of a government approval system insurers look to the professional organizations themselves.  What do they find?  There is a good national program (BCBA certification) to train and certify ABA practitioners.  The result – ABA is the most (indeed, the only) broadly approved behavioral intervention for autism.

Why?  Because it’s the only one with uniform delivery standards nationwide.  I know – many of you will tell me the quality of ABA varies widely and I agree – but the BCBA training standard is indeed uniform and it’s the all we have.

However, as someone who is working to get new therapies developed and deployed, that state of affairs is totally unacceptable.   

I’ve written about new therapies on this blog, and indeed many show great promise.  Their effectiveness has been shown in many studies, yet they are not widely available, and rarely covered by insurance.  Why?  Because there is no way for an insurer to know that the intervention being delivered in North Dakota is the one designed and vetted at UCLA (for example).

University research centers develop these therapies and even do training to propagate them in the field.  Important as those efforts are, they cannot roll out a new intervention on a national scale to augment ABA.  It’s just not realistic for any single group to undertake that except over a period of decades, which we do not have.

So what do we do about this?

I think we need Federal action that mandates insurance coverage for a much wider array of behavioral intervention.  Valuable as ABA is, is it not a path that works for every kid, and frankly, it is “old news.”   We need to get our insurers covering the deployment of new therapies that will help a broader range of kids.

Dr. Insel and I talked about that after the meeting.  He shared my concerns, and suggested this is a problem we could address but it would require legislation that would be resisted vigorously by the insurance industry.  He told me there are groups working on this very question is other fields, like depression.  His comment made me wonder if we need to band together to solve this as one lobbying group.

The fact is, many behavioral interventions have been developed and proven to work for depression, autism, and other conditions, but they are seldom covered by insurance because they are not classified as medical treatments and they lack any equivalent of FDA approval.

I want to thank Peter Bell, his group, and everyone else who has worked so hard to get the insurance coverage we have today.  And I want to thank him for opening our eyes to the true nature of the next obstacle we must surmount – the development of a mechanism by which new autism therapies can be delivered and covered by insurance.  Without that, all the intervention in the world will be worthless to most people, because they will have no way to pay for it it.

And that is wrong.

Note:

John Elder Robison is a member of the IACC, but the opinions expressed here are strictly his own.