138 Patient Groups Oppose HHS Proposal to Scale Back Future Essential Health Benefits

Washington, DC– Today, the I Am Essential coalition sent comments, signed by 138 patient groups, to the U.S. Department of Health and Human Services (HHS) in opposition to its proposal to allow states to scale back essential health benefits insurers must offer to their beneficiaries in the future. The patient groups also voiced concerns with HHS’ proposal to establish a future “national prescription drug benefit standard.” They commended HHS for maintaining the many critical patient protections previously promulgated in regulation, but urged them to take steps to ensure that they are adequately enforced.

The comments were submitted in response to HHS’ Notice of Benefit and Payment Parameters for 2019 Proposed Rule.

“Increasing state flexibility cannot be used as an excuse to allow insurers to scale back the essential health benefits that patients need,” commented Carl Schmid, Deputy Executive Director, The AIDS Institute.  “Since any benefit not deemed ‘essential’ would have to be paid for by the beneficiary, HHS’ proposal would also increase patient costs. We urge HHS to abandon its proposal and retain the current process states use for selecting their essential health benefit package.”

In their comments, the patient groups wrote, “Allowing states to select benchmark plans from other states, or to select a benefit category from another state’s benchmark plan runs counter to meeting the needs of beneficiaries in that state. Constructing the benchmark plan by cherry picking benefit categories will create a plan that does not resemble any existing plan in the marketplace today. These options would allow states to reduce or weaken beneficiary benefits because states can find plans – and categories — anywhere in the country and select the least comprehensive suite of benefits to create scaled back coverage requirements.”

In the Proposed Rule, HHS indicated it is considering a “Federal default definition of essential health benefits,” which could include a “national benchmark plan standard for prescription drugs.”

In reaction, the patient groups wrote, “Since we have no information on how these national standards would be developed, we are concerned that this would lead to limits in beneficiary benefits and increased patient cost-sharing.”

“Developing a ‘Federal default plan,’ which ironically would be the antithesis of providing state flexibility, raises red flags because it most likely would not be expansive and meet the needs of people living with serious and chronic conditions,” said Beatriz Duque Long, Senior Director of Government Relations for the Epilepsy Foundation. “It also could lead to the creation of a national drug formulary, which we strongly oppose because it would limit access to only a select list of drugs and fail to meet individual patients’ healthcare needs.”

While the groups objected to other proposals in the Proposed Rule, including abandoning the “standardized plan options” and the “meaningful difference” standard, the groups did commend HHS for maintaining important patient protections that are in current regulation.

“Patient protections are meaningless without proper enforcement,” commented Andrew Sperling, Director of Federal Legislative Advocacy at the National Alliance on Mental Illness. “We continue to hear from patients that their drugs are not covered, all drugs to treat a certain condition are on the highest cost-sharing tier with co-insurance that can only be attained after meeting a high deductible, and plans institute excessive utilization management techniques including prior authorizations and step therapy requirements. Turning some oversight and enforcement powers over to the states compounds the situation. States must have the regulations in place and the necessary resources to fully address patients’ protections, including discrimination in plan benefit design.”

Current regulations require every plan to cover at least the greater of one drug per class or the same number of drugs in each category and class as the state’s benchmark plan. There are also regulations that requires plans to be transparent in their coverage of benefits and costs, utilize Pharmacy and Therapeutic Committees, and consider newly approved medications and treatment guidelines.

Signatories to the letter included The AIDS Institute, American Lung Association, Arthritis Foundation, American Autoimmune Related Diseases Association, Cancer Support Community, Epilepsy Foundation, Lupus Foundation of America, Mental Health America, The Michael J. Fox Foundation for Parkinson’s Research, National Alliance on Mental Illness, The National Multiple Sclerosis Society, National Organization for Rare Disorders (NORD), National Patient Advocate Foundation, and Susan G. Komen.

The full text of the comment letter and list of 138 signers can be viewed here.


The “I Am Essential” Coalition is a broad group of patient and community organizations representing millions of patients and their families. The Coalition strongly supports access and coverage for the healthcare needs of individuals living with chronic conditions and disabilities. I Am Essential works to ensure health plans provide quality and affordable Essential Health Benefits and to strengthen patient protections in the evolving health care landscape.

Media Contact
Carl Schmid(202) 669-8267

For Media Inquiries, please contact Carl Schmid of The AIDS Institute.



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