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New York Autism Insurance Bill: Protects and Serves Whom?

Sausage By Chris Petrosino

Alison Singer is going rogue. First, she admits that S7000B was drafted by Manatt, the powerful lobbying firm that represents insurance companies. Then, she attempts to torpedo the NYS Assembly campaign of Hon. Thomas Abinanti. We love it. But why would the president of an autism research foundation weigh in on a legislative matter that involves health insurance? Why would the president of that research foundation publicly chastise an Assembly candidate? There's always an end game.

In her irrelevant, but fear mongering talking points, Singer indicates that S7000B will protect parents from using unproven therapies that may be associated with autism, such as chelation (removal of heavy metals from a patient). In reality, there is no proposal on the table, by anyone, to fund chelation or any other unproven therapy. For the purposes of correcting the record, the singular chelation case to which Ms. Singer refers, involved blatant malpractice by a licensed medical professional. Ms. Singer also fails to communicate that chelation, if necessary for any individual, is prescribed by a physician (usually an endocrinologist), after rigorous blood testing uncovers high levels of heavy metals in their system.

In any event, it is odd Ms. Singer worries about anyone getting necessary, physician-prescribed insurance coverage. If insurance costs rise because a generation of defenseless, disabled children need coverage for mainstream treatments, society just has to deal with it.
We cannot take away our children's rights by a vote that is stimulated by the fear mongering talking point of “rising costs” for proven, necessary therapies. S7000B discriminates against those affected by autism by posing insurance coverage standards never before used for any illness or disability. It should not be stated that S7000B is scared of parents. All of us are scared of S7000B. Basically, we are fearful that our children will not continue to receive insurance coverage for mainstream therapies such as speech therapy and occupational therapy. And so is the Occupation Therapist Association of New York. They are on the record, asking Governor Paterson to veto S7000B. Alarmingly, a proponent of the bill, Paige Pierce, of Families Together (more on Families Together later), is reticent about the prospects for continued insurance coverage for proven therapies: "Those are all things we think will be covered," said Paige Pierce, executive director of Families Together in New York State” (HERE)


The operative words here are, “we think.” Want another interesting quote, a curve ball no less? Senator Breslin, the chair of the Senate Insurance Committee, was recently taken to task, by the Albany Times Union, for taking hundreds of thousands of dollars of donations from insurance companies. They wonder if this funding could skew him towards helping out the insurance industry. He stated, “ … If I'm not being influenced by them, I see no reason why I should give back money from insurance companies... " (HERE)

 The key word here is “If.” As far as Abinanti, he is known to be an honest, respected politician. He is a fresh voice of reason and not beholden to anybody. He “tells it like it is,” and errs on the side of the average citizen. Mr. Abinanti is merely advocating non-discriminatory health insurance coverage for disabled individuals, many of whom do not have a voice. Is it possible that Singer was instructed to do a hatchet job on Abinanti's campaign because he is ruffling some feathers? It might be suggested that Ms. Singer worry more about her old boss at Autism Speaks, Peter Bell. Mr. Bell once led the charge for marketing Risperdal to all children affected by autism - those deemed irritable - in other words, all children. His bio, from the Autism Speaks website, states: “Peter joined Cure Autism Now in 2004 following a successful 12-year marketing career at McNeil Consumer & Specialty Pharmaceuticals, a member of the Johnson & Johnson family of companies.” Right around the time that Cure Autism Now merged with National Alliance for Autism Research and Autism Speaks, the FDA (with Johnson and Johnson research on hand), approved Risperdal to be used in the treatment of autism. The corporate-type mergers and acquisitions of research orgs that had previously refused to consider an environmental trigger for autism became big business, and, for some reason, made many in our community, giddy. But, just as many heard the ominous theme song from Star Wars. The day of pharmaceutical companies and multi-national planet polluters controlling autism research, and redirecting it from environmental to genetic/pharmaceutical was upon us.

Risperdal, and other atypical antipsychotics, unfortunately, are known to have insidious side affects in toddlers. Included in those side affects are male breasts (gynecomastia), life-long involuntary shakes, (dyskinesia), severe weight gain, onset of juvenile diabetes, and death. As a matter of fact, Johnson and Johnson, the manufacturer, is being sued by the Attorney Generals in several states, for fraudulently marketing this drug. The suit by the state of Texas alleges that, “Johnson and Johnson overstated Risperdal's effectiveness in treating patients with schizophrenia and downplayed the drug's side effects” ((HERE)  ).

An article from the Wall Street Journal indicates that Johnson and Johnson has also been accused of paying off a Harvard psychiatrist who led studies concerning the efficacy of Risperdal, by funding his research center. (HERE)  While you're at the site, click on the link to the emails that discuss meetings and how the “Risperdal Brand Team” agreed to fund the research center. Risperdal has helped some, but has also caused more pain and suffering than anyone could imagine. Will Ms. Singer, the President of The Autism Science Foundation, come out with a science-based scribe against Risperdal, or Johnson and Johnson? I think not. Will Ms. Singer, who is not a scientist, ever promote research into looking at the potential of environmental causes of autism? The answer, quite probably, is no.

In a move that looked to be preordained, she once quit her position at Autism Speaks rather than attend a federal government sponsored meeting to discuss the need to look at vaccines as a potential cause for the onset of autism. This gave the group a planned, much needed PR boost. They could say, “Look at us, we are losing good people in our quest to investigate vaccines.” Sure. Nevertheless, it always was, and always will be, about getting your bread buttered here. It is much easier (and profitable) to please big business by attacking Abinanti. It is much easier (and profitable) to redirect research away from corporations and pharmaceutical companies that have pumped toxins into our environment or into our children's veins, than to bite the corporate hands that feed you.

If big business insurance companies want S7000B, heck, let's take off our research hats and go to our lobbying for insurance company hats, or go to our lobbying against candidates for insurance reform hats. A gunslinger with a pop gun, but a gun nevertheless. It is because of people like Abinanti that we may get the Governor to veto S7000B. This would enable our community to get a good insurance bill, a solid bill, for our children next year. It is because of people aforementioned that the following paradox exists: A football player who abuses dogs creates a national media storm. He is reprimanded by society and the courts. He is held up as the description of despicable and depraved. He is, rightfully, shipped off to jail, so he may contemplate the serious effects of his actions.

Meanwhile, corporations, or leaders of those corporations that may cause disfigurement, pain, suffering, injury and death to human beings - to seniors – to the disabled - are never exposed or brought to book. Undoubtedly, Ms. Singer, and everyone in a leadership position at the organizations that support S7000B are merely protecting the huge corporations that fund and will continue to fund their groups, and their salaries (up to 600 thousand dollars a year). And oh, did you know that Families Together, the one NYS based disability group that is rallying support of S7000B, received a $75,000 dollar grant from bill sponsor and obvious insurance company advocate, Senator Neil Breslin? They did. See: (HERE)  It is about a bold group that we write here. The wolves are guarding the hen house. We have heard that the legislative process has been compared to watching someone make sausage. We don't mind that. We just don't want to see our disabled children's guts in the mix. We don't want people who are more pro industry than pro children involved with making the sausage, or, for that matter, “speaking” for our children – in any capacity.

Chris Petrosino, father of Chris, a 17 year old boy affected by autism Dad is a part time nursing student, part time investigator, and full time (non paid) advocate for individuals touched by autism...his email is nypaac@yahoo.com

Comments

Autism Custody Battles

Chris, they don't want to hear from us. We know too much and they are trying to shut us up. Personally, I raise the stickiest of subjects: Autism and Custody battles. And they want to shut us up. I won't. http://autismcustodybattles.wordpress.com

Marcia Roth

This is not a little story. I made several calls to legislators to find out the source of the "we have to protect the children from the parents" rant. No one would say. Now we have one person and friends as a a possible source that was given credibility by the cultural cloud of suspicion surrounding parents of children with disabilities. The AP did a story today on a group of Alzheimer researchers meeting to evaluate their progress. The big A was seen first as a normal part of the aging process and only given disease status in the late 1980's. The big A now joins our big A as being unstoppable with no known cause. The meeting highlighted the issue doctor's face in treating a disease with no cause or treatment. To date the best advice is to recommend better diets, exercise, and stimulating the mind to keep the body in the best shape possible. Sound familiar?
Psychotropic drugs do not address the medical condition of autism but do attempt to treat aggression which is the result of the autism. An aggressive person in a forest with no one else around would not be noticed. Add people and then you have aggression as a social issue. New York State embraced psychotropic drugs as a way to close the great institutions. Insurance companies embraced psychotropic drugs as a way to control mental health treatment payments. The result was an increase in the homeless populations and the creation of state funded housing that the courts found to be worse than the institutions. Individuals are now suing because the psychotropic drugs caused significant injuries making employment and independent living impossible. Now there is an organization urging the use of psychotropic drugs as an autism treatment. As long as New York State is spending $2.7 billion a year for group residences, there will not be funding for the needed in home support services for the autism community. We can not allow psychotropic drugs to use as a cheap shortcut to controlling the autism population. OPWDD needs to be reformed to end the money pit of group residences which have too high an injury rate and do not meet the positive support needs of the autism community.
The New York Health Plan Association has called for the veto of S7000B. This shows that the lobbyists are paying attention to what we have been saying and recognized we have a common interest. We live in a world where an organization self labeled as autism friendly has no common cause with us while the insurance industry as a former opponent has now joined our side at this point in time. We have no simple answers or simple path to take to protect and support our children and ourselves. We can go forward no matter how difficult the path.

Arthur Welser

A few have already resigned under investigation, but in January 2010 there were 20 State Senator-attorneys both practicing and writing NYS Law.
Breslin is just the tip of the ice burg!
Statewide I've been following the following State Senate Candidates: Martland; Anna Lewis, Manhattan-Bronx (31st); Didi Barrett, Columbia & Dutchess Counties, (41st); Kathleen Joy, Syracuse (50th); Pamela Mackesey, Ithaca-Elmira ( Ed O’Shea, Oswego (54th); Marc Coppola, WNY (61st) AND Cynthia Appleton, Buffalo (59th)

Susan Goewey

"Risperdal has helped some, but has also caused more pain and suffering than anyone could imagine."
Risperdal? You could say the same thing about insurance companies pushing (and happily funding/reimbursing w/out the hassel they give you for virtually ANY other medical treatment) mass vaccination of infant/toddlers ... I don't think they are deliberately evil. Just stupid, closed minded. And blinded to the great evidence of harm (see our kids) by their profit motives.

Samsdad

Great article, Chris! And to think I used to be empathetic to Ms. Singer after all the abuse she took after the "Autism Every Day" video. Now she goes out of her way to screw over the people she is supposed to empathetic towards. She is truly an evil, selfish woman.

My previous entry was full of typos. :0

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