Health and Human Services Bulletin 12-16-11.pdf
Weekly PCIP Update 12-05-11.pdf
Weekly GR Health Reform Update 12-16-11.pdf
The Department of Health and Human Services (HHS) will
give states more flexibility to implement health reform.
Approach will help ensure consumers have quality,
affordable coverage starting in 2014.
HHS Informational Bulletin 12/16/2011
The Department of Health and Human Services today released a bulletin outlining proposed
policies that will give states more flexibility and freedom to implement the Affordable Care Act.
The Affordable Care Act ensures all Americans have access to quality, affordable health
insurance. To achieve this goal, the law ensures that health insurance plans offered in the
individual and small group markets, both inside and outside of the Affordable Insurance
Exchanges (Exchanges), offer a comprehensive package of items and services, known as
“essential health benefits.”
The bulletin released today describes an inclusive, affordable and flexible proposal and informs
stakeholders about the approach that HHS intends to pursue in rulemaking to define essential
health benefits. HHS is releasing this intended approach to give consumers, states, employers
and issuers timely information as they work toward establishing Exchanges and making
decisions for 2014. This approach was developed with significant input from the public, as well
as reports from the Department of Labor, the Institute of Medicine, and research conducted by
HHS.
“Under the Affordable Care Act, consumers and small businesses can be confident that the
insurance plans they choose and purchase will cover a comprehensive and affordable set of
health services,” said HHS Secretary Kathleen Sebelius. “Our approach will protect consumers
and give states the flexibility to design coverage options that meet their unique needs.”
Under the Department’s intended approach announced today, states would have the flexibility to
select an existing health plan to set the “benchmark” for the items and services included in the
essential health benefits package. States would choose one of the following health insurance
plans as a benchmark:
One of the three largest small group plans in the state;
One of the three largest state employee health plans;
One of the three largest federal employee health plan options;
The largest HMO plan offered in the state’s commercial market.
The benefits and services included in the health insurance plan selected by the state would be the
essential health benefits package. Plans could modify coverage within a benefit category so long
as they do not reduce the value of coverage. Consistent with the law, states must ensure the
essential health benefits package covers items and services in at least ten categories of care,
including preventive care, emergency services, maternity care, hospital and physician services,
and prescription drugs. If a state selects a plan that does not cover all ten categories of care, the
state will have the option to examine other benchmark insurance plans, including the Federal
Employee Health Benefits Plan, to determine the type of benefits that will be included in the
essential health benefits package.
The policy proposed today by HHS would give states the flexibility to select a plan that would be
equal in scope to the services covered by a typical employer plan in their state. States and
insurers would retain the flexibility to evolve the benefits package with the market as innovative
plan designs are developed and advancements in care become available, and meet the needs of
their citizens.
“More than 30 million Americans who newly have insurance coverage in 2014 will have a
comprehensive benefit package,” said Sherry Glied, PhD, assistant secretary for planning and
evaluation. “In addition to assuring comprehensive coverage for the newly insured, many
millions of Americans buying their own insurance today will gain valuable new coverage,
including more than 8 million Americans who currently do not have maternity coverage, and
more than 1 million who will gain prescription drug coverage.”
The bulletin issued today addresses only the services and items covered by a health plan, not the
cost sharing, such as deductibles, copayments, and coinsurance. The cost-sharing features will
be addressed in future bulletins and cost-sharing rules will determine the actuarial value of the
plan.
Public input on this proposal is encouraged. Comments are due by Jan 31, 2012 and can be sent
to: EssentialHealthBenefits@cms.hhs.gov.
For the essential health benefits bulletin, visit:
http://cciio.cms.gov/resources/regulations/index.html#hie
For a fact sheet on the essential health benefits bulletin, visit:
http://www.healthcare.gov/news/factsheets/2011/12/essential-health-benefits12162011a.html
For a summary of individual market coverage as it relates to essential health benefits, visit:
http://aspe.hhs.gov/health/reports/2011/IndividualMarket/ib.shtml
For information comparing benefits in small group products and state and Federal employee
plans, visit: http://aspe.hhs.gov/health/reports/2011/MarketComparison/rb.shtml
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Note: All HHS press releases, fact sheets and other press materials are available at
http://www.hhs.gov/news.
Last revised: December 16, 2011
HHS
11-8-11
Philadelphia
My name is Ann Rogers and I am the Executive Director of the Delaware Valley Chapter of the National Hemophilia Foundation, representing more than 2,000 patients with hemophilia in southeast Pennsylvania and Delaware. Our Chapter is one of 46 member Chapters of the National Hemophilia Foundation.
Hemophilia is a rare, chronic bleeding disorder affecting approximately 20,000 people in the US. Patients with chronic conditions, such as hemophilia, often require specialized care and services in order to live long and productive lives. People with hemophilia bleed internally, typically into their joints and muscles. Bleeding can be fatal depending upon where it occurs (in the brain, throat, chest, etc.) or when bleeding is untreated or improperly treated. Available treatments, called factor concentrates are life-saving and extremely effective, but come at a significant cost. The average annual cost of factor concentrate for a person with severe hemophilia is approximately $300,000; however that number increases significantly if surgery is needed or if a patient develops complications or a reaction to his clotting factor treatment. In these cases the costs may exceed a million dollars per year. (It goes without saying that insurers are familiar with this population!)
Concerns regarding Essential Health Benefits
The National Hemophilia Foundation, the leading organization representing thousands of people with hemophilia and other bleeding disorders, is committed to ensuring that individuals have access to the care and treatment they need. Because patients with chronic conditions, such as hemophilia, require specialized care and services throughout their lives what is considered "essential" for most Americans may not address the needs of this population. It is imperative that any benefit package recognize the unique circumstances of people with high-cost chronic conditions. The essential benefit package must ensure access to specialists and specialized treatments, and prescribed therapies.
For persons with hemophilia, access to specialists (and sub-specialists) and appropriate sites of service are critical to the management of their disorder. For example, most specialists in hematology treat patients with more common blood-related cancers and have limited to no experience in treating patients with hemophilia and other non-malignant bleeding disorders.
Hemophilia treatment centers were established by a federal act of Congress more than 35 years ago and in 1976 were recognized under Title V of the Social Security Act (MCHS Block Grant). These centers bring together a multi-disciplinary team of providers including hematologists, nurses, physical therapists, social workers and pharmacists to provide highly specialized care to assess and provide treatment to those affected. Because these individuals have the need for life-long treatment vs. episodic care, it is important to take into consideration the site of care most effective for the patient. For example, preventative treatment most often takes place in the home setting, while treatment for acute bleeds may be addressed in the physician’s office or the hospital either as an inpatient or outpatient.
Access to all FDA-approved factor concentrates (the medicine) is also crucial and there are only a few available choices. As factor concentrates are biologics, drug formularies imposed by insurers would put patients at extreme risk. The limited products available are expensive biologics that do not have generic equivalents and are not interchangeable with one another. Hemophilia is unique to each individual and it is vital that the decision regarding which treatment is most suitable be left to the hemophilia physician in consultation with the patient and not the insurer.
Question 1 – How can the Department best meet the dual goals of balancing the comprehensiveness of coverage included in EHBP and affordability?
While HHS will need to develop a plan establishing essential health benefits with the general population in mind, as advocates for those with hemophilia, a rare chronic condition, we ask that HHS recognize that there will be outliers, like hemophilia care, that may need to be handled differently. Health plans will need greater guidance than the 10 categories of health services included in the law. Additional guidance should be given to plans to determine within the categories what services should be covered (for example, we believe that for patients with rare chronic disease in need of life saving treatment, a separate process should be established for determining benefit coverage, cost-sharing and medical necessity).
Question 2 - How might the Department ensure that EHB reflect an appropriate balance among categories so that they are not unduly weighted toward any category?
Benefit packages must allow access to all categories so that patients can get the care most suitable for them. Individuals with hemophilia and other bleeding disorders, and other rare, chronic conditions, may require intensive care, and may rely heavily on specialists and prescription drugs. These are medical necessities and should not be limited or weighted in order to strike an arbitrary "balance." Moreover, utilization of specialized treatment facilities, such as the federally-recognized hemophilia treatment centers (HTCs), does not neatly fit into a particular category of services. HTCs provide comprehensive, multi-disciplinary services in a single setting, and have been shown to improve quality of life and reduce morbidity and mortality of individuals living with this chronic disease by 40% as well as costs of care, compared to patients with hemophilia who are treated outside this HTC system. Weighting certain services, even in order to provide "balance," could disrupt this highly efficient model of care. Allowing access to comprehensive care centers ensures that the most appropriate balance of care is provided to the patient by medical professionals.
Question 3 – What policy principles and criteria should be taken into account to prevent discrimination against individuals because of their age, disability status or expected length of life as the ACA requires?
The term "medical necessity" should not be defined by insurers, but should be determined by physicians in conjunction with the patient. People with rare and chronic disorders require specialized care, even when dealing with common ailments so as to prevent complications. Hemophilia patients, in particular, need access to therapies and medicines that may affect each individual differently. Only a properly trained medical professional who has an understanding of a rare condition like hemophilia should be able to determine what is medically necessary. A universal standard of "medical necessity" is not appropriate for people with rare and chronic conditions. We recommend that rare and orphan diseases, including hemophilia and other bleeding disorders, not be lumped together with common diseases and conditions when considering “medical necessity,” so as to better address the unique challenges those patients face.
Network adequacy – some guidance should be given on the concept of network adequacy, specifically as to the definition of “adequate.” Given that the meaning of the term can vary broadly from individual to individual, we would expect that it will also vary from state to state and a potential unintended consequence will be barriers to care. For example, if access to specialists is included as an essential health benefit, does that mean if one specialist from each specialty group is included, the network is adequate or does the plan have to offer sub-specialists? For example, many health plans will include a hematologist in their network, but may not include a hemophilia treatment center, yet most hematologists outside of the hemophilia treatment center network have no experience treating a patient with hemophilia. The majority of those with hemophilia are seen at an HTC, whose multi-disciplinary team is dedicated to the care and treatment of this unique and VERY EXPENSIVE population. One way a plan within the exchange could limit their “risk” would be to include a limited number of “specialists” but not include recognized centers of excellence or sub-specialists treating rare, chronic conditions. Hemophilia treatment centers must be included in plan networks for those plans to be adequate for people with bleeding disorders.
Appeals process – the EHB package should provide assurance that the insurer must confer with the patient’s physician to discuss possible denials and the grounds for rendering such a decision. All must be in writing with clearly understood reasons for denial.
Final thoughts
We expect that people with hemophilia will look to the exchanges across the United States as a way to purchase adequate, affordable health insurance. If the EHB does not provide some consideration of the unique needs of people with rare chronic diseases like hemophilia and if the insurance we are able to purchase does not pay for what we need, the coverage is useless.
