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« The Truth Behind The Lies Play By Play from IACC Meeting | Main | Best of AofA: The Others. Siblings and Autism »

HHS Secretary Sebelius' Disconnect With Reality of Autism Clear at IACC

IACC autismBy Anne Dachel from AnneDachel.com.

Here are HHS Sec. Kathleen Sebelius’s opening words at IACC on July 10, 2012

HERE

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.

It would be far better for us as a country to admit we’re doing nothing about autism Disconnected than to have people like Thomas Insel and Kathleen Sebelius pretend to address this national disaster.

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.

HERE

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

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The truth is that Obamacare will only cause an increase in Autism. We will all be treated in a "one size fits all" fashion because that is all the system will be able to accomodate. I am sure more vacinations will be mandated... As usual the Pharmacueticals will be the only winner... not the people, not our children. And yes, when 50% of our children have Autism, then it will be the new normal. The politicians just need to keep saying this is so until the day it is the reality. God Bless Us All, God Bless The Children!

As someone who has written speeches for federal government and corporate officers, Sebelius sounds like she rolled out of bed and droned off the most generic policy language as if she was still asleep. This language shows how poorly prepared she was, and how not informed she is at all. It reveals how autism is not a priority---and is not really on the agenda at all. That's pretty much what I have come to see over the past few years but this lousy non-speech shows it for sure. I hoped Obama would do better with autism than Bush but since he has normal kids, I guess he doesn't get it either. I'm not partisan on this issue. I just want someone to do something. AS my son would say, Total fail!

I didn't expect much from the beginning @ Sebelius' appointment considering that she has no problem with late term abortions.... she even celebrated the now deceased doctor in a party at her governors mansion... With such a low view of human life, why should we expect her to help with our kids?

If the IACC thinks that autism rates have been constant then they have no reason to exist. If there is no increase, there is no problem. Maybe this could be pointed out to congress.


@Doodle.

Exactly!

HHHHHAAAAA Too funny - reminds you of a lizard.

Like that really pretty lady - but a lizard under it --in the old television series "V"
Yeah, the top lady lizard was eating all the humans like beef cattle.

Apparently Sebelius and Insel don't know how much better they'd feel by admitting the truth... as if a giant weight had been lifted. One might conclude that they are in fact incapable of feeling at all.

Astounding and deliberate ignorance!
@ Heidi N
I couldn't agree more. They will never back down because there is simply so much to loose. Many American families with Autism are being BRAINWASHED by their local ped into thinking that there isn't anything to do to help their kid-except interventions offered by the state. I too have to admit that it looks bleak. All you can really do is spread the word on how to medically help your kids (and self) and if people listen- they listen, and if they don't- they don't. I use NOTHING that THEY offer and I mean nothing. I realize that everyone can not do what I am doing, but we just went rogue from the system. My kids are home schooled and I don't use insurance unless I absolutely have to. I want nothing from them anymore. I'm hurt, pissed, and aside of my concern that they are hurting innocent, newly diagnosed families with their total bullcrap, I don't care what they do. They are not the ones that are going to get my kids better-that is the one thing I can be sure of. I don't even want them counting my sons in the Autism numbers, because it is all justification to continue to overtax and under serve the American public for something they KNOW they are single handedly worsening. The number is so obviously alarming. This kind of deliberate doublespeak is appalling. There shouldn't have to be a meeting convincing these people that Autism numbers are troubling. This reminds me so much of a visit in my terribly dysfunctional extended family. We are talking and they are talking over us with unrelated, irrelevant information. The medical community here is clearly brought and paid for, and unless we come up with the money to buy them back, it is unlikely that they will change. They should be ashamed of themselves and instead, they deem themselves as hardworking benefactors to our community (and other chronically ill communities) that they study behind the scenes because they really do know the truth.

mind controlled puppet, disconnected and dead from the neck up. That to me defines Sebelius. and, unlike Lyn Redwood and Gerry Dawson and Sebelius offered nothing useful. She just babbled. Just a bobble headed puppet.

Sebelius's 465 words reflect the real 'callous disregard'.

There should be a new acronym for the Interagency Coordinating the Callous Disregard for the Autism Epidemic.

I don't think she lives under a rock. I think she is part of a larger entity that's killing us all. She's a part of the destruction of America, population control and bringing everyone under the New World Order. She knows exactly what's she's doing.

We have epidemics in cancer, MS, ALS, Lyme Disease, mental illness, diabetes, and of course autism, and much more. Mainstream medicine is failing in all of those areas. I went to alternative medicine to recover my family, and I think that we need to use what works and stop using what doesn't. Sorry, but I have no hope in mainstream medicine. It's just not working. If you want to get well, keep asking the successful people how they did it because that's what I did. I applaud you all trying to get greedy people to change, but I have no faith that they will.

If the IACC thinks that autism rates have been constant then they have no reason to exist. If there is no increase, there is no problem. Maybe this could be pointed out to congress.

really, as long as everyone has access to contraception and all the shots they are scheduled for, we should all just shut up and sing kum-bay-ah...

Sebelius is truly frightening. She appointed three new members who don't believe in treating autism and her goal is to make autism look normal. Unreal!

RE:
GERI DAWSON: 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.

Actually you could find all the effective treatments you need if you look in the right place. Talk to people who had success recovering their children. You got Lyn sitting right there. Ask her about Will.

Unlike "Jerry's Kids" where they have been looking for a "cause and a cure" for 50 years...

Autism has long ago been declared, a "no cause, no cure, no treatments, please give up, disease."

Should a parent or a doctor find anything that works with this vaccine induced disaster, it will be fought by the insurance companies and government because they do not want to have to pay for any new procedures that treat the vaccine mess they have created.

Perhaps Ms. Sebelius could try to dictate a few simple items.

1) Such as FDA testing of Thimerosal "from 1930 standards to modern standards" to see if it is a proper vaccine preservative for....infants in 43 states.... at six months of age.

2) A second item which might help Autism families, would be a coupon for $10 off your next dental visit with the often required anestioligist.

3) A simple vax / unvaxed study to see if their Autism rates are the SAME.

The most frightening part of Sebelius' speech was the opening where she said scientists once thought autism was rare - 1 in 2000 - but now we know it's 1 in 88. She clearly denies that autism is truly on the rise and is trying to normalize it, as is the CDC director who said "autism is common" when 1 in 88 was announced.

This administration is the first to attempt to normalize autism. Sebelius did not mention prevention or environmental causes of any kind, even though prevention is one of the stated goals of the Combating Autism Act. Sebelius is spending over $600 million taxpayer dollars pretending to combat autism, but she's doing no such thing. It's normal now, and she's appointed 4 IACC members to back this up.

This link to her speech works:
http://www.hhs.gov/secretary/about/speeches/sp20120710.html

I always think Sebelius resembles a lizard. Now I know why. She lives under a rock. Hey Kathy -- health insurance doesn't help autism families. That's because CDC, NIH, HHS, IOM, AS, IACC, ACIP, CBER, and the rest of the alphabet have apparently made a blood pact NOT to address the underlying medical issues of autism out of fear of where such facts might lead. They have ceded control of the "epidemic" to shrinks on the pharma payroll. As a result, the testing and treatments, as demonstrated in the post below, are often considered experimental and THEY AREN"T COVERED. Dingbat. Get out of your terrarium and get testing and treatment out of "experiment" land and into the mainstream before you brag about how great Obamacare is.

Health insurance is balking already at treating our kids. I just got a letter from BC/BS challenging a recent ER visit that involved an incident with my son. The insurance companies are going to fight us not help us. They'll send their lobbyists to Washington to protest any expansions of coverage for autism.

Sebelius' particpating in the IACC meeting was a political maneuver in an election year. She'll go back to ignoring us once the election is over.

In other words, "We don't know much about autism. And we're doing a pretty crappy job with this whole thing, but we look forward to continuing to do a really crappy job and we thank you for the opportunity to continue to do a really crappy job. And a lot of people are gonna get health insurance. And once we get a look at next year's budget, we might be able to do something. Or maybe not. But thank you for so passionately pointing out how we are doing a really crappy job, and thank you again for this opportunity to do a really crappy job."

Unreal.

Thanks for posting. Amazing...they spoke of the lost wages from family members. They spoke of the lack of quality treatments. They spoke of the lack of jobs and housing for adults with autism. And Sebelius responded with the talking point that more people will have health insurance!

Health insurance only helps if it has quality treatments to deliver. Health insurance isn't going to get the parents back in the workforce who had to give up careers to care for their children with autism. And the adults with autism who have no jobs and very limited housing options already have Medicaid, so health insurance wasn't their big issue either. She simply didn't listen to the problem being put before her.

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