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The Autism Treatment Acceleration Act

Healthcare tag By Julie Obradovic

Recently we had the opportunity to read a draft of a U.S. Senate Bill titled, “The Autism Treatment Acceleration Act” co-sponsored by Illinois Senator Dick Durbin and at the time Senator, now President-elect Obama from Illinois.  Unfortunately, upon reading many of us were incredibly disappointed to think that our lawmakers would see this as the answer to accelerate treatments for autism.

Now, not all of the proposed language in the bill was bad; there was insurance coverage for treatments like speech, OT and ABA, psychopharmacology and medication management.  This section had some merit and could be made more acceptable with some additional language and slight changes.  Not all bad.

But more prominently, the federal bill highlighted the establishment of a new movement in health-care reform: the Medical Home Model. It’s a network of approved providers that work together in a virtual home to coordinate medical services. Essentially, rather than having to coordinate what’s happening with your ST, OT, PT, ABA Therapist, Pediatrician and so forth, they do it for you all with the help of a Primary Care Coordinator. They call it “patient-centric”. 

Wanting to know exactly what the implications of this model could be, some of us Illinois constituents decided we better get up-to-speed on its details. Given its prominence in a federal bill sponsored by our Illinois Senator and endorsed by our Present-Elect, as well as the possibility of it being the model for future healthcare treatment for the chronically ill and disabled, it is imperative we understood it thoroughly.

Which brings us to our most important concern.

Under the MHM those who dictate medical care and standards of treatment for Autism, the gatekeepers of all medically necessary care if you will, could very well be those who have fought against evaluating and treating the underlying pathologies associated with autism.  Provided so many feel “Autism is all in the head”, treatment options may indeed strictly reflect that philosophy; regardless of the fact not all of us agree that psychopharmacology should be the primary standard of care. It’s a frightening thought.

So just where did this Medical Home Model idea come from? Who has been working to influence our Illinois Senator and President- Elect that the MHM is the answer to save money and reform healthcare, particularly for the treatment of Autism?

They call themselves the Patient Centered Primary Care Collaborative, an organization with well over 250 participating members representing the pharmaceutical industry, doctor groups, large employers, and insurance companies. Here are the 34 members of the Executive Committee:

Aetna; Alere Medical; American Academy of Family Physicians; American Academy of Pediatrics; American College of Physicians; American Osteopathic Association; Blue Cross Blue Shield; The Capital District Physicians’ Health Plan, Inc.; CIGNA; CVS Caremark; DMAA: Care Continuum Alliance; the Dow Chemical Company; EHE International; GlaxoSmithKline; Health Care Services Corporation; Humana, Inc.; IBM; Kaiser Permanente; McKesson Corporation; Medco; Merck; Microsoft; Novartis; Pfizer; Priority Health; Sanofi-Aventis; Taconic IPA, Inc.; TransforMED; UnitedHealthcare; Universal American Financial Corp.; Walgreens; Wal-Mart; WedMD; and Wellpoint.

Upon further investigation, it seems while being portrayed as a “patient-centric-model of care” the MHM is indeed a provider directed model of services, not a consumer directed one. In fact, one description presents the care as being physician directed care with input from the patient. This definition then begs the questions:

• What happens if you, the patient, have a differing opinion of your Primary Care physician?
• Is participation in the MHM then voluntary?  If not, isn’t requiring persons with a specific disease or disability discriminatory? 
• Will patients have the freedom to seek out differing medical opinions outside of the Medical Home should they disagree? 
• Could insurance coverage eventually be exclusively rewarded to only MHM providers?

The implication of the establishment of a MHM for accessing appropriate medical care for our children greatly concerns many of us. It is no secret much of the traditional medical community has ignored many of the treatments we have seen to be most promising for our children.

Thus far, it seems glaringly obvious many of the “stakeholders” promoting the Medical Home Model are not the patients themselves.

Now, we’re not saying we believe Senator Durbin and President-Elect Obama don’t indeed believe they are trying to do right by persons with Autism.  It is for that reason that we believe it is imperative to share that we strongly feel that this bill in its current form doesn’t come close to achieving their objective.

In fact, we fear that this bill truly “accelerates” nothing but the status quo and quite frankly scares the hell out of most of us who have unfortunately sat with too many physicians and insurers, who denied our children medical care for issues related to gastrointestinal, immunological, endocrinogical and other pathological features with which our children suffer.  As parents and family members, we must seek out to educate them on their significant medical needs; the present “standard of care” for autism does not reflect what our children experience.

What we strongly endorse however, and had hoped this bill reflected more of, is the language which appears on Senator Dick Durbin’s web page with regard to the Combating Autism Act.  Senator Durbin supported the Combating Autism Act which allocated millions of dollars to the research and treatment of Autism.

Even better, Senator Durbin criticized the Bush Administration with regard to finding treatments for Autism citing some of the same reasons we have;

“While the Senate’s passage of the Combating Autism Act is a significant step in the right direction, Durbin said he has been disappointed with the Bush Administration’s overall lack of commitment to biomedical research – including research which has the potential to cure autism and other conditions and diseases.”

In the same article he describes Autism as a “public health threat” and informs us of letters he has written to the CDC and NIH urging them to act more quickly.

http://durbin.senate.gov/showRelease.cfm?releaseId=261424

Now those are positions we can get behind, but unfortunately none of that is presently reflected in the bill’s proposed language. As such, members of Durbin’s health care staff were given a copy of a new version of the bill that many of us living with autism think would better reflect an, “Autism Treatment Acceleration Act”. 

It is our sincerest hope he and our new President Elect will consider how much more his previous sentiments are reflected in this version and give our children a voice in legislation that has the power to determine their medical care.

Julie Obradovic is the mom of a recovered child.

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Julie,
Thank you for all your help and support!!! Please post and let us know if there is anything we as parents can do to help push for passage of the revised bill. As parents, we have a voice and it's imperative that we ALL use our voices to let Durbin and President Elect Obama know that we are the voices of our children and we are informed and determined.

As parents, we are powerful and if we work together, we CAN make a difference!!!!

Pat


Hey Kim and Twyla-

I have been busy and am just seeing your comments. I figured the ND agenda was pushing the envelope here--too bad they use so much negative energy and spin their wheels--they accomplish nothing for kids with autism.

BOHICA -
And what are you doing that is so great?

How you could sit there and criticize Julie, who is working very hard on behalf of people with autism, is beyond me.

I rarely say this, but your comment is incredibly stupid.

Julie, Thanks for the summary of this bill. And thanks to all for working so hard to make this bill better.

Teresa, here's your answer: ..."Of course, as with the bogus Combating Autistics Act passage..."

You see how this commenter calls it the Combatting Autistics act instead of autism? This is likely a member of the neurodiversity community in for a quick visit. Sometimes it's good to let them show their true colors here and so I'll slip them a entry ticket.... Typically one use only.

Kim

Bohica,

Why the sarcasm and blatant attack to Julie? On the surface, this bill had merit until one digs deeper. Your comments do nothing to help this situation or the larger picture in the autism community.

This statement-

"Maybe if your kid is really recovered you should just buzz off or at least mind your own business?".....

really is about as mean as mean could be. Thank goodness there are concerned parents of recovered and unrecovered kids who are looking out for ALL our kids.

Bohica, Julie has chosen to help other families to help their own kids, even though she could selfishly walk away, as you so politely suggest....

Kim

It sounds like a few lobbyists aren't exactly fired up about their prospective bed-fellows.

Try donning a paper bag. (They're free, ya know!)

Bottom line: Any parent of an autistic kid already knows you can't legislate treatment decisions. Those decisions don't require an Act of Congress.

Of course, as with the bogus Combating Autistics Act passage, by the time it becomes visible it's already too late.

You can't flatten the tire on a steam-roller, can you? It hasn't got any.

Maybe if your kid is really recovered you should just buzz off or at least mind your own business?

The queer part is the author knew about this bill BEFORE the election ever took place and said nothing until now.

Wow Julie, awesome article. Just one thing I'd add, how about the medical community recognizing heavy metals poisoning! Obama seems to care about it:

http://obama.senate.gov/press/070718-senator_obama_a/

I said it before and I'll say it again, nobody wanted to deal with my son's high lead...and I mean nobody. Washington Department of Health wouldn't even do a test for us and is of the belief that lead poisoning is "rare"...wow, I think they just don't want to deal with it.

http://seattletimes.nwsource.com/html/localnews/2004085648_leadkids21m.html

Elizabeth Soliday

Thank you so much, Kelli Ann and Julie, for your work on this! This work must be very frustrating. But keep on pushing against that big stone, and surely it will start to roll!

"They call themselves the Patient Centered Primary Care Collaborative, an organization with well over 250 participating members representing the pharmaceutical industry, doctor groups, large employers, and insurance companies."

It boggles my mind that this "collaborative" seemingly includes everyone but the actual patients. Shouldn't one put on board parents who actually have recovered children to see what treatments ought to be included? And that a single treatment might not work for all.

And that there might be alternatives out there for treatment that might not fall under this current collaborative umbrella? I mean alternative treatments that actually *work* not medications that are band-aids or palliatives. I know a lot of parents that would be bumped out of that fish net, and back to square one.

I need a system that will support my child and my family. He not only has autism but he has many other medical issues that affect his health.

We have been let down by many doctors who can only see their particular point of view on my child's autism and do not look past that diagnosis to the other medical conditions that contribute to his health.

I shudder to think that we would have to rely on an HMO type decision makers.

I do think that there are effective treatments that should be accessible. Insurance coverage should cover treatments that do help!

Thanks Julie for the awareness and advocacy!
Does anyone have a side by side comparison of 'their' version of the bill and the 'revised' one that was submitted to his office? I would love to see that if anyone has it...
Thanks!
Angie
Mom to Ethan, Alex, and Megan

Julie thanks for your insight and constructive criticisms. Excellent points, all!

Lin

Getting ABA paid for would be nice, particularly if this includes getting the provider of choice.

As for psychopharmacology-- bleah. I don't have to ask why this approach is always displayed so blatantly in the conclusions of IACC and so many bills regarding autism, despite the fact that the research backing the drugs is just more tobacco science peddled by pharmaceutical companies to sell wares and hide adverse events.

It's time for reality based medicine. So far, the "evidence" in evidence based medicine has been left up to the subjective judgement of financial interests. Reality based medicine would include the treatments which thousands of parents have seen work and would include prevention. None of that is going to happen as long as pharma's influential fingerprints are all over relevant legislation.

Just goes to show you that any committee can take a good idea and turn it to crap (but tell you it's the next best thing!)

For truly innovative practice models, the work of Dr. Eby should be looked at:

http://www.innovativecaremodels.com/uploads/File/values/scf.pdf

A system that is patient driven and marks its success on healthy outcomes rather than tests ordered or prescriptions written is an idea I can stand behind.

"Evidence-based medical approaches."

Love that one. It's their way of saying since HBOT, MB12, ST, OT, Floortime, etc are not "approved" evidence based medical approach to adding value in the care, well, then, we just won't pay for it. I already have a MHM here with BCBS in Florida and they are not paying for anything now, what's going to change in the Federal Future?

3 words - More denial paperwork.

These are the red flags for me in the brochure on PCPCC (Medical Home Model):

"Utilize the latest health information technology and evidence-based medical approaches, as well as maintain updated electronic personal health records"

"Payment recognizing the value added"

"Rewards for higher value"

"Performance based incentives and compensation for achieving measurable and continuous patient health improvements"

Which brings me to the most glaring question: WHO gets to decide what "higher value" is and how it is measured??

Is it the number of shots?? Number of baby well visits?? Number of prescriptions written??

My guess is AAP along with Pharma will be on the top of the list.

We certainly KNOW WHO gets to determine "evidence-based medicine" in the ORIGINAL bill -- HRSA and CDC.

Bottom Line: Generation Rescue is supporting the revised bill which was presented to Durbin's office late last week and we will continue to work closely with Illinois constituents (Julie Obradovic, Laura Cellini and Christina Blakey) to *push* for passage of the *REVISED* bill.

Kelli Ann Davis
DC Political Liaison for Generation Rescue

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