Patient Groups Object to Proposals to Increase Cost Sharing for Drugs

Proposals to Favor Generics Appear Sensible, but All Will Impede Access to Critical Medications

Washington, DC – Today, the I Am Essential coalition submitted comments, signed by 87 patient and consumer groups, to the Department of Health and Human Services (HHS) urging them to reject proposals that would increase patient cost-sharing as they access life-changing and sometimes, life-saving prescription drugs.

In response to the proposed 2020 Notice of Benefit and Payment Parameters, which dictates yearly changes in the individual and small group insurance market, the patient groups caution against efforts that seek to reduce healthcare costs that would actually increase cost-sharing for people with serious and/or chronic health conditions as they access their medications. Among the changes are proposals that restrict when copay assistance provided to individuals with high out-of-pocket costs would count towards their deductible when a generic equivalent exists, not consider patient spending on brand name drugs when a generic exists as part of essential health benefits, and allow for mid-year formulary changes.

“People with complex, expensive acute and chronic health conditions depend on manufacturer assistance to help pay for high out-of-pocket costs, which can reach as high as $7,900 for an individual or $15,800 for a family. Due to proliferation of high deductible plans, just because a generic is available doesn’t mean that it’s affordable,” commented Carl Schmid, Deputy Executive Director of The AIDS Institute.

Copay assistance has become critically important for patients to cover their out-of-pocket costs. A recent study concluded that 69 percent of patients who were faced with paying more than $250 for their prescription did not pick them up. “HHS seems to understand the importance of copay assistance programs for when there are only brand name drugs, which is significant,” added Schmid. “We hope that they will take steps to enforce this policy and inform plans and states that copay accumulator programs, which block copay assistance from counting toward an individual’s deductible, are prohibited.”

Under the proposed regulation, insurance companies could prohibit copay assistance from counting towards an individual’s total out-of-pocket costs for a brand drug if a generic option exists. While the vast majority of copay assistance is for brand name drugs that do not have a generic equivalent, the patient groups agree that such a proposal could be possible if the generic drug was truly a low-cost generic. The groups added, “But, at a time when insurance plan benefit design often includes high deductibles, it is also important to consider the beneficiary’s total costs… CMS’ proposal would be possible only in those instances when total patient cost-sharing for the generic is not greater than the brand drug.”

The I Am Essential coalition expresses concerns with the proposal that would change the definition of essential health benefits by only counting those costs by the patient for generic drugs if a brand was available. In the comment letter, the groups caution against such a significant change, and note that plans already have great latitude in favoring generics over brand drugs in their formulary design.

The coalition also came out against the proposal to allow mid-year formulary changes and discontinue coverage of the brand drug if a generic is approved. “People sign up for a plan based on the drugs on its formulary,” explained Laura Weidner, Vice President, Government Relations and Advocacy, Epilepsy Foundation.

“Many conditions are highly individualized and people respond to different drugs differently. Discontinuing coverage of a drug that a patient is stable on can lead to serious, life-altering or in some cases, life-ending consequences.”

I Am Essential also raised concerns with possible future proposals that would allow plans to implement reference pricing and permit therapeutic substitution, the practice of forcing patients away from the drug prescribed to them and onto another drug in the same therapeutic class. They also urged HHS to continue allowing the practice of auto-enrollment for beneficiaries and for states to implement “silver loading”.

Finally, Andrew Sperling, Director of Federal Legislative Advocacy of the National Alliance on Mental Illness, concluded, “We’re pleased that CMS is emphasizing to plans the important patient protections, including non-discrimination provisions, that all plans must abide by. However, since we continue to see plan benefit designs that violate these provisions, we urge HHS and the states to fully enforce them.”


Signatories to the letter include Cancer Support Community, Mental Health America, National Hemophilia Foundation, National Multiple Sclerosis Society, and The Arc of the United States. The full text of the comment letter and a list of all 87 signers can be viewed here.

Media Contact
Carl Schmid(202) 669-8267

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