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Friday, November 17, 2017

The Autism Treatment Market

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.

Autism treatment is a business.  There are many good providers, with dedicated therapists who can help autistic people achieve remarkable outcomes. But there are a lot of substandard providers and outright scamsters, too.  It is extremely difficult for parents to find reliable, standardized information about providers and the quality of the services they offer.

A release from Marketdata:
Marketdata LLC, a leading independent market research publisher since 1979, has released a new study, a 50-page report entitled: The U.S. Autism Treatment Market . The study traces the market from 2009-2022 Forecast, examining programs and medications used to treat children with autism. This is a little-researched, but growth niche market.
According to Research Director, John LaRosa: “Applied behavior analysis (ABA) has become widely accepted among health care professionals and is used in many schools and autism treatment clinics. Occupational and speech therapy are also used.”
Major Findings:
Market Value… The U.S. autism treatment market was estimated to be valued at $1.85 billion as of 2016, growing to $1.87 billion in the current year. Marketdata forecasts 3.9% average yearly growth, to $2.23 billion by 2022. This could be conservative, as insurance coverage is improving.
ABA (applied behavioral analysis) programs are estimated to generate $1.07 billion in revenues this year, and prescription drugs for autism symptoms account for $800 million.
Patient Demographics…. Based on new government data that finds that 1 in 45 children in the United States, aged 3-17, have autism, Marketdata analysts estimate that there are 1.4 million children with autism. Another 700,000 adults have autism, having “aged out” of childrens’ programs. 81% of autistic children are male.
The total annual costs for children with ASD (autism spectrum disorder) in the United States were estimated to be between $11.5 billion and $60.9 billion -- a significant economic burden.
There are basically three types of ABA program providers: brick & mortar centers, community providers, and In-home therapists.
The “average” ABA center grosses about $821,000. Many are non-profit organizations. Many now have waiting lists and there is a shortage of qualified supervisors.
Insurance coverage is a problem, but the share of children with access to insurance coverage is expected to increase from the 36% level today. In addition, the number of self-funded private employers covering autism treatment continues to grow.
Venture capital firms are starting to take notice of investment opportunities in this market.
Data suggest that approximately 58 percent of patients with a diagnosis of childhood autism receive some type of pharmaceutical treatment. However, this segment of the market has been shrinking in value as concerns continue over side effects of drugs such as Risperdal. These drugs also face competition from cheaper generics, as patents have expired.
Nine large multi-site ABA program providers operate an estimated 296 brick and mortar centers and employ thousands of therapists. Together, they account for about $390 million in revenues—a 38% market share of ABA programs.

"Many autism treatment organizations, and some of the largest competitors, are located in California. This is due to the fact that funding for treatment programs has been in place there since the 1990s, prior to the insurance mandates that were later put into place.”, according to John LaRosa.
As for the last point, note that Lovaas worked at UCLA and many of his students work in the region.

Many self-advocate object to "economic cost" analysis, arguing that it treats autistic people as burdens rather than contributors to society.

Finally, note the emphasis on children.  Autistic youths grow into autistic adults, and they continue to need services.  We know a good deal less about the fate of autistic adults.


Thursday, November 16, 2017

Nominee to Head Special Education Office

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

From the White House:
From Johnny Collett of Kentucky, to be the Assistant Secretary of Education for Special Education and Rehabilitative Services. Mr. Collett is the Director of Special Education Outcomes at the Council of Chief State School Officers. In this role, he supports states in their work to raise expectations and improve outcomes for children and youth with disabilities. He previously served as Director of the Division of Learning Services and State Director of Special Education at the Kentucky Department of Education. In this role, he provided oversight to a division that included special education, as well as other program areas such as English Learners, gifted and talented, response to intervention, the Kentucky School for the Blind, and the Kentucky School for the Deaf. He also served on the board of directors of the National Association of State Directors of Special Education, serving a partial term as secretary-treasurer of the board. Mr. Collett also served in various other roles, including exceptional children consultant, assistant division director, and acting division director. Prior to working at the Kentucky Department of Education, he was a high school special education teacher. Mr. Collett is a graduate of the University of Kentucky, and Georgetown College (KY).
From an April interview with Collett: 
The same reason that academic success for any student is important to me. While it is true that much progress has been made over the last 40 years since the passage of the Individuals with Disabilities Education Act (IDEA), it is also true that there is still much work to do to ensure that all children, including students with disabilities, are prepared for success. For example, states have learned that a focus on compliance under IDEA, while necessary, is not sufficient by itself to improve achievement and outcomes for SWD. States are not content to maintain environments where the achievement of compliance alone is viewed as success. As a result, the focus has expanded beyond compliance to include intentional focus around results and to improving achievement and outcomes for SWD, as well as associated staff development and school improvement toward that end.
 At his confirmation hearing, senators should ask him about reports that DeVos wants to change rules concerning minority enrollment in special education.

Wednesday, November 15, 2017

Senate Tax Bill Would Repeal the ACA Individual Mandate


From the Autistic Self Advocacy Network:
ASAN remains strongly opposed to the elimination of the individual mandate to purchase health insurance under the Affordable Care Act (ACA), and condemns the inclusion of repeal within the latest versions of the tax bills.
The individual mandate helps make insurance more affordable, especially for people with disabilities. The bipartisan Congressional Budget Office has shown that 13 million people could lose access to affordable coverage if the mandate is repealed, with premiums rising an average of 10%. The American people have strongly rejected such proposals three times in this year alone. Taken in conjunction with the Budget resolution which cut $5 trillion dollars over the next decade from Medicaid, Social Security, and other essential services that allow people with disabilities to live good lives in our communities, the tax bill and the repeal of the individual mandate amount to a full-scale attack on people with disabilities.
It is reprehensible and immoral to take health care away from 13 million people in order to let corporations and the wealthiest Americans avoid paying their fair share of taxes. The lives and liberty of people with disabilities are worth more than this. ASAN urges Congress to heed the clear voice of the disability community–and many others–and abandon this umpteenth attempt to force a destructive and partisan agenda.

Tuesday, November 14, 2017

Trump Names Drug Company Guy to Head HHS

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Trump promoted that idea, but stiffed antivax activists in his appointments to FDA and CDC.

Now he is nominating a drug company guy to head HHS.

From the White House:
Alex Michael Azar II of Indiana, to be the Secretary of Health & Human Services. Mr. Azar is currently the chairman of Seraphim Strategies, LLC. Mr. Azar has led a notable career by serving in several senior roles in both the public and private sectors. As President of Lilly USA, LLC, the largest affiliate of global biopharmaceutical leader Eli Lilly and Company, he directly led the U.S. Biomedicines business unit, the affiliate’s largest division, encompassing the areas of neuroscience, cardiovascular health, men’s health, musculoskeletal, autoimmune disease, Alzheimer’s disease, and pain, as well as the sales, marketing, and payer operations of the company’s U.S. commercial business. Prior to his time at Lilly USA, Mr. Azar was the Deputy Secretary of the U.S. Department of Health and Human Services immediately after serving as its General Counsel, where the Senate confirmed him for both Presidential appointments by voice vote. He received his bachelor’s degree from Dartmouth College and his juris doctorate from Yale University.
Eli Lilly is not only a major manufacturer of vaccines, it is the company that developed thimerosal.

Antivax Rep. Dan Burton represented the Indiana district where Lilly is located. He attacked the company, and its executives (though not Azar personally) contributed to his primary opponents in 2010.

The antivax people are probably unhappy.

Trump betrays everybody.

In this case, good!

Monday, November 13, 2017

Hyping Research

In The Politics of Autism, I discuss various ideas about what causes the condition.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "  

 A release from the University of Nebraska-Lincoln:
A breakthrough in finding the mechanism and a possible therapeutic fix for autism and intellectual disability has been made by a University of Nebraska Medical Center researcher and his team at the Munroe-Meyer Institute (MMI).

Woo-Yang Kim, Ph.D., associate professor, developmental neuroscience, led a team of researchers from UNMC and Creighton University into a deeper exploration of a genetic mutation that reduces the function of certain neurons in the brain.
Dr. Kim's findings were published in this week's online issue of Nature Neuroscience.
"This is an exciting development because we have identified the pathological mechanism for a certain type of autism and intellectual disability," Dr. Kim said.
Recent studies have shown that the disorder occurs when a first-time mutation causes only one copy of the human AT-rich interactive domain 1B (ARID1B) gene to remain functional, but it was unknown how it led to abnormal cognitive and social behaviors.
Autism spectrum disorder (ASD) impairs the ability of individuals to communicate and interact with others. About 75 percent of individuals with ASD also have intellectual disability, which is characterized by significant limitations in cognitive functions and adaptive behaviors.
There are no drugs or genetic treatments to prevent ASD or intellectual disability; the only treatment options focus on behavioral management and educational and physical therapies.
The team created and analyzed a genetically modified mouse and found that a mutated Arid1b gene impairs GABA neurons, the 'downer' neurotransmitter, leading to an imbalance of communication in the brain.
... 
"We showed that cognitive and social deficits induced by an Arid1b mutation in mice are reversed by pharmacological treatment with a GABA receptor modulating drug. And, now we have a designer mouse that can be used for future studies."
The study may well be very good neuroscience, but any connection between a mouse study and intervetnions that will help autistic people will encompass many years and countless other studies. Autism affects behaviors (e.g., speech) that mice cannot perform in the first place.  It is pure hype to use a headline such as "Breakthrough research suggests potential treatment for autism, intellectual disability."

Sunday, November 12, 2017

House Tax Bill Would Hurt People with Autism and Other Disabilities


At The Daily Beast, Elizabeth Picciuto explains why the House tax bill would hurt people with disabilities.
The provision that will have the most catastrophic effect on disabled people is the removal of the deduction for out-of-pocket medical expenses. Currently, if your out-of-pocket medical expenses exceed 10 percent of your adjusted gross income, you can deduct that from your tax bill. In the Jobs and Tax Cuts Bill, that provision is excised completely.
Depending on individual circumstances, people who pay out-of-pocket for personal care assistants and durable medical equipment would be among those experiencing the most calamitous repercussions. Someone who needs a new power wheelchair to get to work and recreational events may have to fork over tens of thousands of dollars. A caregiver who can only maintain a full-time career if she hires a personal care assistant to provide care for an aging parent may be forced to quit her job. A disabled person who can live independently in the community so long as he has a personal care assistant may have to live in a nursing home instead.
“[Disabled people are] a group at a disadvantage that’s been targeted to raise revenue,” says Thomas Cooke, a professor specializing in tax law at Georgetown University. “The broad sweep of this bill is to cut corporate taxes significantly. Somebody’s got to pay for that reduction. And I’m afraid it’s being paid on the backs of individual taxpayers, including taxpayers with disabilities and medical expenses.”
...
Another provision that specifically affects disabled people is the elimination of a tax credit granted to businesses to comply with the Americans with Disabilities Act, or ADA. Businesses that, for example, wish to build a ramp, hire a sign language interpreter, or make their website more accessible can no longer claim this exemption. “It’s disastrous,” Cooke said.
Concurrently, there is a bill pending in the House, H.R. 620, designed to make it harder for disabled people to sue businesses that do not comply with the ADA. Suing is the primary current enforcement mechanism for failures to comply with the ADA.
In tandem, the tax bill and H.R. 620 would make it more expensive to comply with ADA and less risky to violate it.

Saturday, November 11, 2017

Insurance Mandates Mean Autistic Kids Get More Services

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.

Brendan Saloner and Colleen L Barry have an article at Autism titled "Changes in Spending and Service Use after a State Autism Insurance Mandate." The abstract:
Almost all states have insurance coverage mandates for childhood autism spectrum disorder treatment, yet little is known about how mandates affect spending and service use. We evaluated a 2011 Kansas law mandating comprehensive coverage of autism spectrum disorder treatments in the State Employee Health Plan. Data were extracted from the Kansas All-Payer Claims Database from 2009 to 2013 for enrollees of State Employee Health Plan and private health plans. The sample included children aged 0–18 years with >2 claims with an autism spectrum disorder diagnosis insured through State Employee Health Plan or a comparison group enrolled through private health plans. We estimated differences-in-differences regression models to compare trends among State Employee Health Plan to privately insured children. Average annual total spending on autism spectrum disorder services increased by US$912 (95% confidence interval: US$331–US$1492) and average annual out-of-pocket spending on autism spectrum disorder services increased by US$138 (95% confidence interval: US$53–US$223) among diagnosed children in the State Employee Health Plan relative to the comparison group following the mandate, representing 92% and 75% increases over baseline total and out-of-pocket autism spectrum disorder spending, respectively. Average annual quantity of outpatient autism spectrum disorder services increased by 15.0 services (95% confidence interval: 8.4–21.6) among children in the State Employee Health Plan, more than doubling the baseline average. Implementation of a comprehensive autism spectrum disorder mandate in the Kansas State Employee Health Plan was associated with substantial increases in service use and spending for autism spectrum disorder treatment among autism spectrum disorder–diagnosed children.
From the study:
It is unclear what factors drive increased utilization. One likely possibility is that increasing the spending cap led families with children who were previously constrained
to use more services. Another possibility is that some of the increase in spending and service use with an ASD diagnosis code may be related to reclassification of services
that were already being provided to children prior to the mandate. For example, a child previously receiving counseling with an intellectual disability diagnosis may be classified with an ASD diagnosis after the mandate in order to take advantage of better coverage. We found large, but not statistically significant, reductions in non-ASD spending and prescription drug spending after the mandate. Finally, better access to services for ASD-diagnosed youth may reduce spending in other areas due to improved medical management (e.g. reduced visits to the emergency department). Identifying the contribution of these factors is important for further research.
...
The Kansas SEHP experience demonstrates that coverage mandates can be effective in increasing receipt of services among youth with diagnosed ASD. With a growing number
of states implementing these mandates, experiences may differ depending upon factors such as the scope and enforcement of the mandate, the response of insurance companies to new requirements, and the level of awareness among physicians, patients, and parents of children with ASD. As was found in Kansas, new mandates may create opportunities for children to take advantage of a broader array of services. Whether these policies lead to better quality of care and improved outcomes among these children will be an important benchmark for future evaluation.