Sebelius Unscripted

My expectations for the Interagency Autism Coordinating Committee (IACC) meeting on July 10, 2012 were really low, given their past performance, and I didn’t hold out much hope that the attendance of the Secretary of the Department of Health and Human Services (HHS) Secretary, Kathleen Sebelius, was going to add much. I watched the meeting while chatting online with an autism parent group, and I was in very good company in my disgust. We are all so fed up with the IACC’s inaction. I was pleased to see members of the Canary Party stand with their backs to Sebelius during her remarks, I only wish there had been 4,000 of us there to drive the point home more deeply.

Here are Kathleen Sebelius’s opening remarks at the 7/10/12 IACC meeting. Thank you to Lyn Redwood for pointing out the importance of looking at Sebelius’s off-the-cuff remarks and for her tireless representation of our community’s point of view as an IACC member. My critical comments about the IACC have nothing to do with you. Thank you also to Anne Dachel for transcribing the meeting for all of us.

Following Secretary Sebelius’s speech, Lyn Redwood, RN, MSN, who has served as a public member of the IACC since 2007, commented to Sebelius “we are in a crisis mode” and “we desperately need your help.” Geraldine Dawson, PhD, the Chief Science Officer for Autism Speaks, told her ‘‘We need to move from an academic exercise to one where we start seeing these real issues that I’ve just outlined, changed over the next course of our work together.”

In response to Redwood and Dawson, Sebelius remarked:

“Well, let me just say that I appreciate the sense of urgency and the sense of crisis. I don’t have the personal experience that many of you have as either a diagnosed person with autism or a family member, so I don’t pretend to share that personal expertise. I will tell you there is a sense of urgency, and I’m a believer that often an individual office is more isolating than having a range of services that are focused on NIH, CDC, HRSA. Out of our 11 agencies, the FDA, we have individuals in all those who really are working on this day in and day out. We do not have enough research going on at this point. We don’t have the kind of screening at an early enough level, trying to ramp up those priorities. But I do think that having a focus, having a major health care framework that is in place and moving forward for the first time ever in the country, and the kind of impact that will make, not only for people who lack insurance but anyone with a preexisting health condition, will have a situation where they will not ever be able to be denied health coverage in the future. That is a step forward that has been talked about in this country for 70 years but never realized. So I do think that there is progress. That’s not to deny that there needs to be a sense of urgency and more needs to be made. But you have identified a national plan and it is updated and there is a great deal of focus throughout our department, not in one office or one entity, but throughout agencies in our department to try and leverage whether it’s CMS or at NIH or with the health work force or with public health folks to bring those assets together and figure out what we can do. So we look forward to it. I am eager to have your specific input about where, where those priorities should be, and I know that Tom and Francis will again keep me posted. And, frankly, this is a good time to be meeting, because we are having the preliminary discussions about the next budget cycle and where funds should be identified. So your timing is very good. Those discussions are underway. Of course, we don’t have last year’s budget yet. We are beginning to talk about next year’s budget, and maybe Congress will catch up with the fiscal year one of these times, and we’ll figure out exactly where we are. But thank you, really, for what you’re doing, for the work that you’re doing and the kind of passion that you bring to this effort and for the information you give us. Thank you.”

Thank you for what? What passion? She says she is interested in the committee’s input yet leaves the meeting after she concludes her own remarks. She was there for maybe 20 minutes. What meeting did she have to go to next? Name another health crisis growing at the same proportion as autism? Leverage? Assets? What is she talking about? Who are the individuals working “day in and day out”? The only people I know doing that are autism parents. Show me the sense of urgency? I don’t see it coming from this committee. We know Autism isn’t an urgent priority for her — this is the first IACC meeting she has thought to attend.

I was completely unimpressed with Sebelius’s performance. She was a perfect fit for the IACC committee, though. She talks a good game, but her words are empty. There is a total disconnect between her patronizing comments and glad-handing of bureaucrats and the minute-to-minute drama in the real life of an autism family and the autism tidal wave unfolding in our country. The last shred of hope I held that Kathleen Sebelius would take autism seriously was dashed at this meeting. Unfortunately I feel the same way about Tom Insel and the IACC.

If I were married to the IACC, I would have divorced them by now. I would have been urged to by every friend, relative, and health provider, because it is clear that the IACC is not interested, willing or capable of meeting my needs as the parent of a sick autistic child. Tom Insel has been the director for almost exactly the same length of time that Nick has had autism: six years. In that time, $6 billion dollars has been spent, yet he has not accomplished one thing that has had any impact on my autistic child or my family. I wish I could ask for a refund.

So Tom Insel and the IACC are a bad match for me, and we need to part company. To expect change from the IACC at this point would be masochistic and a waste of energy. We can’t say that we need the IACC because they haven’t done a damn thing for us anyway. The only change that has been initiated in the lives of sick autistic children has come from the parents.

Autism has torn the emotional vibrance right out of my family and left us gutted unnecessarily. This tragedy, which continues, like quicksand, to suck our nation’s children down into sickness and neurological chaos, could have been avoided. Autism could have been stopped, or still could be, if we had decent political and medical leadership. We don’t have it because the depth of integrity that it will take to turn this catastrophe around is not at the helm. Instead we have the caliber of Tom Insel and Kathleen Sebelius.

If you would like to tune in and see if there is a meaningful response to the vital public comments made in the July 10th IACC meeting here is how:

Interagency Autism Coordinating Committee (IACC) Conference Call

• Conference call and webinar of the IACC on Friday July 27, 2012 from 10:00a.m. to 2:00p.m. ET.
• The committee will discuss and vote on the establishment of subcommittees, as well as discuss future IACC activities and public comments that were received at the July 10, 2012 IACC meeting.
• Conference Call Access: USA/Canada 800-857-7423
• Access code: 8875622
• Webinar Access: https://www2.gotomeeting.com/register/732043378

I am going to try to go to the beach!

~ Alison MacNeil a.k.a. Mama Mac

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