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.
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.