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Update: Autism, ‘Essential Benefits,’ and the New Federal Health Care Law

October 12, 2011 3 comments

By Stuart Spielman

Since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) last year, the impact on coverage for autism benefits has slowly begun to take shape. As federal agencies implement the new law, three U.S. Courts of Appeals have ruled on theconstitutionality of the ACA.The U.S. Supreme Court is expected to weigh in by next summer.

Last week, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, proposed a set of guidelines for the U.S. Department of Health and Human Services (HHS) to follow in deciding what benefits should gain coverage.The IOM report does not define an autism benefit, but rather lays the groundwork for HHS to issue regulations that may determine autism coverage for affected individuals. Entitled “Essential Health Benefits: Balancing Coverage and Cost,” the report was requested by HHS.

As noted in an earlier blog, words do matter in implementing the ACA. HHS should not ignore congressional intent that the ACA make effective, evidence-based care available to people with autism. Nor should HHS ignore the difficulties families have experienced in accessing proper treatment and the consequences of inadequate care.

The ACA requires certain insurance plans to cover an “essential health benefits” package — a set of services, treatments, and care defined by HHS.The essential benefits package must include at least 10 general categories of benefits, including “behavioral health treatment” and “habilitative services and devices,” and it must be equal to the scope of benefits provided under a typical employer plan.

The IOM recommends that HHS use the following process to establish the initial essential health benefits package:

1. Start with the scope of benefits provided under a typical small employer plan in today’s market, then modify those benefits to reflect the ACA’s 10 general categories of benefits and a framework developed by the IOM that accounts for economics, ethics, evidence-based practice, and population health

2. Adjust this preliminary package by a cost target based on what small employers and their employees can afford

3. Weigh possible trade-offs through public discussion of benefit costs

4. Define the essential health benefits package as specifically as possible. If a service can reasonably be construed to fall into any general category and is not expressly excluded, it should be considered eligible for coverage as long as judged medically necessary for a particular patient

The IOM concluded that state-mandated benefits should not receive any special treatment in the definition of the essential health benefits, but rather be evaluated by this process.Implementation will begin in 2014, and by 2016 the essential health benefits are expected to apply to 68 million people.

With the release of the report, it is now up to HHS to act upon the IOM’s recommendations. In doing so, HHS should bear in mind these findings from the 2005/06 National Survey of Children with Special Health Care Needs:

  • 48.6% of children with autism have inadequate insurance (as compared to 32% of children with special health care needs other than autism)
  • 31.1% of children with autism have an unmet need for a specific health care service (14.8%)
  • 38.6% of families who have a child with autism have financial problems (16.7%)
  • 57.2% of families who have a child with autism cut back or stop working (21.7%)

As the IOM recommends, HHS should be guided by a duty to protect the most vulnerable members of society.HHS Secretary Kathleen Sebelius has promised to issue regulations soon.

“But before we put forward a proposal, it is critical that we hear from the American people,” Sebelius said. “To accomplish this goal, HHS will initiate a series of listening sessions where Americans from across the country will have the chance to share their thoughts on these issues. These conversations will help us ensure that every American can access quality, affordable health coverage they can rely on.”

Autism Speaks will announce the listening sessions once they are scheduled. It will be critical to make your voice heard.

Message from the Chief Science Officer regarding the Institute of Medicine’s report on Adverse Effects of Vaccines

August 26, 2011 58 comments

Geraldine Dawson, Ph.D., Autism Speaks Chief Science Officer

On Thursday, August 25, the Institute of Medicine’s Committee to Review Adverse Effects of Vaccines Board on Population Health and Public Health Practice released its report on the scientific evidence related to adverse effects of vaccines. The Institute of Medicine (IOM) is a non-profit, non-governmental organization which is part of the National Academy of Sciences. IOM members are scientific and medical experts who serve as pro bono as advisors to the U.S. Congress and other policy-makers. They are periodically asked to provide a review of the evidence on matters of public concern and welfare.

Among several other topics, the IOM committee specifically reviewed the evidence regarding whether the MMR vaccine or the DTaP vaccine is causally linked to autism. In addition to reviewing epidemiological evidence, they reviewed case studies and research on biological mechanisms that might explain a connection between a vaccine and an adverse outcome, such as autism. They specifically assessed the evidence that vaccines could alter neuronal development resulting in autism symptoms, arising from chronic encephalopathy, mitochondrial disorders or other underlying disorders. The committee reviewed 22 epidemiological studies that evaluated the connection between risk for autism and the MMR vaccine and concluded that the evidence does not support a causal link between the MMR vaccine and autism. The committee only found one study on the relationship between the DTaP vaccine and autism and concluded that the data were insufficient to assess an association.

The committee noted that reports of case studies linking the onset of autism to infectious diseases such as encephalitis and malaria suggest that infection or inflammation may underlie some cases of autism. Furthermore, evidence from postmortem brain tissue suggests that autism may involve inflammatory processes affecting the brain. The authors argue that, at a minimum, prior to ascribing autism to vaccination it would be important to rule out chromosomal and single-gene defects, including a variety of metabolic (e.g. mitochondrial disorder) and inflammatory or infectious diseases that may exist prior to vaccination.

The IOM report is consistent with Autism Speaks’ policy statement on vaccines. Given the present state of the science, the proven benefits of vaccinating a child to protect them against serious diseases outweigh the hypothesized risk that vaccinations might cause autism. Autism Speaks continues to support research that explores the relationship between innate or acquired metabolic, inflammatory, or infectious diseases that may play a role in the etiology of autism.

In Healthcare Reform, Words Do Matter

January 20, 2011 2 comments

This guest post is by Stuart Spielman, Senior Policy Advisor & Counsel for Autism Speaks.

On January 13 and 14, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, held a public workshop on a critical part of the new healthcare reform law, the essential health benefits package.  The law describes as essential the following general categories of items and services:

  1. Ambulatory patient services
  2. Emergency services
  3. Hospitalization
  4. Maternity and newborn care
  5. Mental health and substance use disorder services, including behavioral health treatment
  6. Prescription drugs
  7. Rehabilitative and habilitative services and devices
  8. Laboratory services
  9. Preventive and wellness services and chronic disease management
  10. Pediatric services, including oral and vision care

The task of the IOM, and ultimately the Secretary of Health and Human Services, whom the IOM is advising, is to develop the rules for using this list in designing health plans that will be offered beginning in 2014 through state insurance marketplaces.

For families affected by autism spectrum disorders(ASD), the fifth item on the list holds a special meaning.  The words “including behavioral health treatment” do not appear by accident; on the contrary, these words are part of the law because of amendments offered by Representative Mike Doyle, co-chair of the Congressional Autism Caucus, and Senator Robert Menendez.  As Senator Menendez pointed out at the time he offered his amendment.

Behavioral health treatments help to reinforce wanted behaviors and reduce unwanted behaviors, and the treatments are critical for individuals affected by autism and a variety of other disorders.

They can help a child to communicate and care for themselves; they can help that child from — stop him from hitting himself and those around him; they can enable a child to attend regular education classes, rather than special education classes; they can enable a child to live at home, rather than an institution.

Representative Doyle and Senator Menendez (joined by Senator Richard Durban and Senator Robert Casey) have separately written the IOM, urging that the behavioral health needs of people with autism spectrum disorders be addressed and that applied behavior analysis be included in all health plans.  The IOM and the Secretary should accept this counsel.

On January 18, the Interagency Autism Coordinating Committee (IACC) considered health care reform and insurance coverage issues as part of its meeting agenda.  These issues are likely to be further considered at the next full meeting of the committee on April 11.  The focus on health care reform at the IOM and the IACC present a critical opportunity to correct a decades-long pattern of discrimination against people with ASD.

See Stuart Spielman’s presentation to the IOM

State Autism Health Insurance Laws Should Be a Part of a National Benefit Package

January 12, 2011 8 comments

This blog post is by Stuart Spielman, Senior Policy Advisor & Counsel for Autism Speaks.

At the request of the Secretary of Health and Human Services, the Institute of Medicine (IOM) is undertaking a study on “essential health benefits” – the benefits that must be provided by insurance purchased through the competitive marketplaces created under the new healthcare reform law.  The IOM will be holding public hearings in Washington on January 13th and 14th to consider the policy principles that should be taken into account in defining specific elements of the benefits package.  The IOM has sought comment on a number of questions, including the methods the Secretary should use in evaluating state health insurance coverage laws for inclusion in the national benefit package.  Autism Speaks has recommended that the Secretary judge these laws by the following principles:

  • Efficacy in improving benefits and services to populations at risk of poor health outcomes. For individuals with disabilities, state health insurance coverage laws can remedy coverage determinations that reflect bad health policy.  Arbitrary decisions regarding medical necessity, denials based on artificial distinctions between habilitation and rehabilitation, and faulty judgments that specific treatments are experimental can entirely shut out vulnerable populations from access to health care.
  • The benefit of a law relative to its cost. Market decisions regarding coverage may place undue emphasis on short-term economic costs rather than longer-term gains.  A broad-based calculus should be used when evaluating state health insurance coverage laws: extended life, reduced disability, and improved community integration should all be considered when evaluating laws that affect people with disabilities.  A required benefit that enhances a child’s ability to live safely at home and diminishes special education and social services costs pays for itself.
  • Continuity of care. Americans, particularly disabled Americans, make fundamental choices based on health care.  They decide where to live and for whom to work with an eye on benefits and services.  State health insurance coverage laws influence their decisions.  These laws, which are often the result of years-long efforts by mothers and fathers and children, deserve deference, as people continue to rely upon them.  Failure by the Secretary to include in a national essential benefits package laws that protect people with disabilities would reduce their coverage and jeopardize their health.

These principles underscore the value of state autism health insurance coverage laws.  The burdens of autism are exacerbated by gaps in insurance coverage that result from the denial of benefits for proven treatments.  Children with autism are more likely than other special needs children to delay or forego care entirely.  Their families have greater out-of-pocket costs, diminished work hours and lost income, and more negative health plan experiences.

Twenty-three states have responded to the challenges faced by individuals with autism and their families by requiring comprehensive coverage.  Cost analyses suggest that the long-term benefits of autism health insurance laws will be substantial relative to their modest cost, which is often estimated at less than .5% of premiums.  Millions of Americans now rely on these laws to establish a standard of care.

Existing state autism insurance coverage laws remedy the failure of the market to provide effective coverage for a significant public health challenge.  Judged by any standard – justice, cost to benefit, or maintaining quality care for a vulnerable population –these laws should be integral to a national essential benefit package.

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