The Alliance for Patient Access / IfPA’s Patient Access Policy Blog / HHS’ Proposed Non-discrimination Rule Leaves Chronic Disease Patients in the Lurch

HHS’ Proposed Non-discrimination Rule Leaves Chronic Disease Patients in the Lurch

by Amanda Conschafter, blog editor

Patients battling chronic disease may find little consolation in the Department of Health and Human Services’ newly proposed rule on non-discrimination under the Affordable Care Act. The rule interprets Section 1557 of the law to protect against sex discrimination and to ensure communication capabilities for disabled and non-English speaking patients. Yet it fails to protect chronic disease patients against health plans that place insurmountable barriers to the prescription medications they need.

Section 1557 has been in effect since the 2010 passage of the Affordable Care Act and, HHS reports, the department’s Office for Civil Rights has enforced it since that time. Patients with chronic disease might disagree. In the years since the law’s passage, patients covered by a health plan purchased through the federal or a state exchange have discovered certain trends:

  • Narrowing health care provider networks
  • Increased placement of prescription medications for chronic disease on specialty tiers with high cost-sharing
  • Enhanced use of management tools such as prior authorization and step therapy to minimize plan costs by restricting patients’ access to costly medications.

Because patients with chronic diseases often depend upon prescription medications to maintain their daily lives, insurance barriers can impact them severely. For example, patients battling hepatitis C who cannot access new curative treatments because of restrictive plan designs may see their liver advance into late-stage fibrosis.

It’s little surprise, therefore, that several patient groups have characterized such plans as discriminatory. Insurers, they argued, were attempting to reduce their expenses by deterring patients with high-cost chronic disease from purchasing coverage. Hundreds of patient groups, including the AIDS Institute, the American Lung Association, Easter Seals, the Epilepsy Foundation, the Leukemia & Lymphoma Society, and the National Alliance on Mental Illness, submitted complaints to HHS.

But HHS’ proposed rule is a far cry from the clarification that beleaguered chronic disease patients had envisioned. Patient groups responded in a recent letter to HHS that:

  • The rule should define “disabled” patients to include those impacted by chronic disease, not just those covered by the Americans with Disabilities Act
  • The rule should explicitly characterize discriminatory design features as such, specifically:
    • Not covering certain medications that chronic disease patients need
    • Not following treatment guidelines
    • Placing all medications for certain disease on the specialty tier with a burdensome cost-sharing requirement
    • Imposing excessive management tools targeted at specific patient populations.

HHS is accepting comments on its proposed rule until November 9.


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The Alliance for Patient Access is a national network of physicians dedicated to ensuring patient access to approved therapies and appropriate clinical care.
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