By Anne Dachel from AnneDachel.com.
Here are HHS Sec. Kathleen Sebelius’s opening words at IACC on July 10, 2012
In her remarks there was no crisis. She praised IACC for all their accomplishments.
What followed in the comments by Lyn Redwood and Geraldine Dawson painted a far different picture of what autism is doing to America. It is clear that HHS and IACC are paralyzed by the autism epidemic. Both Lyn Redwood and Geraldine Dawson described a national health care emergency of unprecedented proportions. Sebelius responded as someone completely oblivious to the dire situation Redwood and Dawson had just talked about. She was clearly at a lost for words and could make only vague references to taking action.
Lyn Redwood’s comments to Sebelius start at 126.30 and end at 129.
Geri Dawson follows her comments and supports the same concerns, then
Sebelius responds which ends at 135.
Lyn Redwood: 126:30I want to share the concerns that Alison raised. I actually brought the two letters that we sent to your office. …If you could take those back and give us some guidance in terms of the next step with the recommendations that we’ve made. When I first started on the committee, in our strategic plan, we recognized that autism is an emerging national health crisis. In the last version of our strategic plan, we recognized that it is one. The new numbers out of CDC, of one in 88 children with autism, and when you look at specifically boys, it’s one in 50. The new study that was recently out of South Korea, which the numbers are much more recent, than the data we have here in the U.S., which is 12 years old, is one in 38. And that’s essentially what I have heard from experts on the ground who are serving younger children, is more what we’re seeing here today. Dr. Insel, at the meeting back in October, you recognized this as a crisis, but we have not had an official recognition as a national health crisis from the administration and we desperately need that to be able to mobilize the services and the resources that we need to address this that same way we would H1N1, or SARS, or AIDS. We function in an advisory capacity and as a member, it’s been somewhat frustrating because we cannot set policy, we cannot fund research, and we need a specific agency that is able to do that for us. RIght now, in my opinion, it’s a hodgepodge. We need an office under the director modeled after the office for AIDS, that can be there day in and day out and address these urgent issues. Because right now, we really don’t have that and we are in crisis mode. There is another recent study that just came out that looked at the estimated cost for autism, those have also increased since we last met. The new estimates are up to $126 billion a year. This new figure expands on previous estimates by including indirect cost such as lost family income and productivity in addition to the direct cost of autism associated services. We have a tsunami facing us because the majority of these children are still under the age of eighteen. And when they age out of the system, there’s no place for them to go. So we truly are in crisis mode and we desperately need your help.
Geri Dawson: 129I want to thank you for being here and thank you for reappointing me to the IACC. It’s certainly an honor. I think what you’re hearing here is a sense of impatience and frustration. I think the IACC in many ways has been a very effective group in setting a set of objectives. It’s literally a list of all the things we need to do to address the priorities that autism brings. But there is a sense that honestly, not much has changed. And in fact, if you look over the last several years, things have gotten worse. The prevalence has increased. In terms of treatments, we still don’t have effective treatments. There’s two FDA approved medical treatments, and they’re not for core autism symptoms. The age of diagnosis, the median age in the last CDC report was four years for autism and six years for Asperger’s Syndrome, and yet know that the age in which kids can be reliably diagnosed is 18-24 months. Kids don’t have access to early intervention. We have seen the costs of autism increase from $35 billion annually to $137 billion annually and we know that the adults, who are moving from adolescence to adulthood are unemployed and socially isolated and they’re facing tremendous health problems–heart disease, obesity, and other health problems. So I think that the frustration here is that we’ve all earnestly worked together to identify the priorities, but there is this real sense that things are not changing and that the government is not recognizing autism as a true public health crisis and emergency that needs some kind of national plan and top-down coordinated strategy, people working everyday to address what has become this true public health crisis. We hope that we can change this culture from one of an academic exercise to one where we can start seeing these real issues that I’ve just outlined, changed over the next course of our work together. So I hope that you can hear that and many of us express that.
Kathleen Sebelius: 131:34 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. 135