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Patient Welfare at Risk: HHS Proposed Rule Will Limit Applicability of Co-pay Assistance Programs

March 2, 2020

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This January, the Department of Health and Human Services (HHS) released a proposed rule that could drastically affect the affordability and accessibility of medications and treatments, especially for those with serious and chronic health conditions. This rule would give insurance companies permission to prevent co-pay assistance from contributing to an individual’s annual cost-sharing responsibility.

Furthermore, this rule would alter the definition of “cost sharing” itself to exclude payments made by such assistance programs. This proposal would have detrimental effects on individuals such as those with primary immunodeficiency (PI), who depend on co-pay assistance to help them receive life-sustaining medications and treatments. This is why the Immune Deficiency Foundation (IDF) is committed to opposing this proposal and helping maintain the affordability and accessibility of care for those with PI.

Individuals all across the country rely on co-pay assistance programs to help them afford their high-cost medications and treatments. If this HHS rule is finalized, these individuals, including those with PI, will face a tremendous financial burden that they likely cannot endure. The high costs of treatments and medications for those with PI make the applicability of co-pay assistance towards cost-sharing requirements a central issue to the PI community and IDF. The surge in the cost responsibility of medications and treatments that would result from this proposal could lead to the postponement or even discontinuation of patients’ treatments, likely at the cost of the individual’s health and wellbeing. Additionally, the lack of generic alternatives for treatments regarding PI means that these individuals will be hurt even more by the loss of these assistance programs. 

Policies that limit the aid provided by co-pay assistance programs are often referred to as co-pay accumulator programs, and are thankfully are beginning to be addressed by legislation introduced in state legislatures.  IDF continues to track co-pay accumulator measures occurring across all 50 states, and has been working to ensure that co-pay assistance can benefit those with PI and other chronic health conditions. To address this specific proposal by HHS, IDF has worked in many ways to secure the affordability and accessibility of medications and treatments to those with PI. By joining numerous coalitions, as well as assisting in the authoring and submitting of comment letters to HHS, IDF is continually battling this policy and the detrimental effects it would certainly create. Please stay tuned for IDF action alerts and other calls to action at the state and federal level where IDF is engaging in efforts to enact policies to end co-pay accumulator programs found in health insurance policies nationwide.

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