Why the “Autism Policy Reform Coalition” was wrong

The Autism CARES Act has passed the Senate. Assuming it is signed by President Obama it will soon become law. This extends and expands the framework set up previously under Pub. Law No. 109-416. The only vocal opposition to this bill that I saw came from within the autism communities. (ASAN was neutral, I believe). In specific, a group of small organizations with a focus on vaccines as causing autism formed the Autism Policy Reform Coalition. Autism CARES had a lot of momentum and I think even a good alternative bill would have faced difficulty replacing Autism CARES. But the proposal by the Coalition was not good.

Let’s start with the current structure, as set out by Pub. Law No. 109-416. The government is advised on the research priorities–and other topics–by the Interagency Autism Coordinating Committee (IACC). The IACC has members representing the various federal agencies which fund autism research, representatives from private organizations funding autism research, researchers, autistics and family members of autistics. It does this through drafting and updating a Strategic Plan and an annual report to Congress on autism research advances.

It is important to keep in mind that the IACC policy as well as research mandates. Examples are the IACC Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder and the IACC Letter to Secretary Sebelius on Health Coverage. So it can advise on policy as well as research. There’s just a more clear structure to what is expected in terms of research advice (the Strategic Plan is required. Policy advice is not).

In order to make the current system work there is an Office of Autism Research Coordination (OARC). These are the dedicated people who do the hard work. For example, they plan the meetings, make them work (which takes a lot of people), put together the reports, and more. OARC are a lot of hard working people doing a thankless job, without whom this process would fall apart.

That’s where we are today (at least from my point of view). Autism CARES adds an additional duty–someone in Health and Human Services will be charged with being the point person on autism. Plus some specific projects (like a report on adults and transitioning youth).

The Secretary of Health and Human Services shall designate an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities

This official will “take into account” the Strategic Plan and make sure that research is not unnecessarily duplicative.

All these details sound like a lot but it’s fairly straightforward–there is the IACC advising the government, with support from OARC and now a point person in HHS overseeing the implementation of the government’s strategy. It’s simple, and it puts stakeholders (autistics, family members and researchers) directly in the stream drafting the Strategic Plan.

Some people suggest that no one listens to what the IACC has to say. To those people, I say, take a look at who the federal members are. That’s a lot of high level, decision making people who are involved with drafting the Strategic Plan and who listen to the public members every meeting. Again, the process puts stakeholders right in the mix with the decision makers. Also, most of the research being performed falls into the project areas the IACC set out in the Strategic Plan. Does the IACC have control? No. Influence? Yes.

Now consider the plan that was offered by the Autism Policy Reform Coalition. Who knows if anyone in the legislature seriously considered this proposal as a viable option to Autism CARES. Let’s start looking at why I, for one, didn’t see this as a viable option. In place of the IACC, they create two offices. The Office of Autism Spectrum Disorders Research and the Office of National Autism Policy Coordination. OK, see what they did there? They split the research and policy parts into two offices. Each will create separate Strategic Plans, each in their own area. Each Office will have need support staffs, like the IACC has OARC. So now you have four entities. Where are stakeholders in this? Well each new Office gets its own “advisory panel”. So you have six entities, assuming that the advisory panels share the support staff of the Offices they are attached to. If not, then you have eight entities.

Getting confusing?

More than just creating a lot of jobs (coming out of the autism budget), while these proposed stakeholder advisory panels have voting power in drafting the Plans put out by each office, these advisory panels are one step removed from the planning process. They are separate

Why would someone propose this? I can’t say. I can say that in this proposal the advisory groups would be majority or entirely stakeholders. So, within their own advisory panels, stakeholders would have more power to make statements without having to convince non-stakeholders to vote along.

Much as I write about autism politics, I’m no fan of politics. I would never trade the opportunity to work directly with the decision makers for the chance to make statements.

Oh, yeah, and about those stakeholders. Here’s one paragraph discussing an advisory panel:

An Advisory Panel of qualified parents or other relatives of persons with autism shall be established, modeled on the integration panel for this purpose existing within the Congressionally Directed Medical Research Program (CDMRP). As with the CDMRP panel, the integration panel to the OASDR shall have voting rights with respect to the drafting of the annual strategic plan for autism research, and with respect to grant requests presented to the OASDR for the award of autism research funds.

If your eyes glazed over with the alphabet soup, let me draw your attention to the role of autistics in the advisory panel. Or, to be more accurate, the fact that there isn’t a role for autistic adults. We are back to “the autism community is comprised of parents” philosophy.

The fairly minimal costs for the administrative overhead for this Office should be found in offsets from the existing CAA funding by redirecting non-priority dollars authorized to the NIH and HRSA under the prior versions of the CAA

“Minimal costs” and a new government entity are not terms I would put in the same sentence. More important to me, what are “non-priority dollars”? Not spelled out, but no priority is given in their document to, say, improving the lives of autistic adults. Yes, there would be money to move around since priorities would shift.

Which begs the question, what do they put as a priority?

The statute should redirect HRSA resources on autism towards research designed to create a medical model for autism management, a special patient population standard of care.

In my own opinion, a large fraction of research effort is already directed towards medical management. If we look at the autism research portfolio (here data from 2010):

2010 ASD Research Funding by IACC Strategic Plan Question – All Funders
(Total ASD funding = $408,577,276)

You might say, “treatments and interventions, that’s only 17%?”. Yeah, but you gotta include biology, and that’s another 22%. Without an understanding of the biology of autism, you will never get to effective therapies. Well, maybe in some sort of Edisonian approach. However that not only takes a long time, but it’s pretty obvious people aren’t light bulbs. Edison burned out a lot of light bulbs in his search to find a good filament. Groping around blindly for treatments can lead to disastrous results in humans. Perhaps the ARPC may feel they already know the biology of autism (vaccine injury, heavy metal poisoning, oxidative stress, neuroinflammation and more). That hasn’t always worked out so well.

At present the majority of federal autism research funds go to NIH. About 80% per an article in Congressional Quarterly that just came out. The Coalition’s proposal focuses primarily on NIH. Too much in my opinion. While one could say that might be justified given their large stake, in my opinion their proposal doesn’t do a good job of coordinating with the other federal funding agencies. And there little to no coordination with private funders. Private funders account for a large amount of autism research dollars. Simons Foundation, Autism Speaks, Autism Science Foundation and more private organizations contribute a great deal to autism research. In 2010, the Simons Foundation alone was the second largest funding agency after NIH. Yes, a larger contribution than any other federal agency than the NIH.

The Coalition further proposed assigning the funds for the NIH to their proposed Office of Autism Spectrum Disorders Research. It sounds like this would give more power to the advisory groups, but without some framework whereby this Office manages the funds, it’s just bookkeeping.

The Coalition presented themselves as wanting to delay Autism CARES to make some small but helpful changes. They were neither small nor helpful.

I had hoped to write something before Autism CARES passed. While it’s pretty much academic now (and likely was even before Autism CARES passed as I don’t think the Coalition had much traction), it’s worth reviewing their proposal.

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By Matt Carey

note: I serve as a public member to the IACC but all comments here and elsewhere are my own.