Exchange Plans Disrupt Rx Access for Rare Disease Patients, New Study Reveals

By Amanda Conschafter, blog editor

New research suggests that rare disease patients purchasing health coverage through a state or federal exchange face an all-too-common challenge: access to so-called orphan drugs. According to an article from October’s Journal of Managed Care and Specialty Pharmacy, many exchange plans obstruct access to therapies for rare diseases through prior authorization requirements or step therapy – or they exclude these therapies from their drug formularies altogether.

The study surveyed 11 therapies across seven rare diseases, considering how exchange plan formularies list these drugs throughout the 15 states with the highest expected enrollment. As reported by The Hill, the group of orphaned drugs surveyed was covered 65 percent of the time.

Some drugs, however, frequently fell subject to utilization management techniques such as prior authorization or step therapy, also known as “fail first.” Access to the therapy most often prescribed for Huntington’s disease, for instance, involved these techniques in 75 percent of plans. Designed to contain costs, these techniques can also hinder timely access to vital medications.

Prior authorization requirements have long troubled patient advocates as a roadblock to medical access. In her oft-cited article, “Prescription for Prior Authorizations: A Better Way,” author Leah Krieger offers alternatives to the prior authorization quandary – giving physicians a set number of prior authorizations “to use at their discretion” before requiring formal prior authorizations, for example, or allowing for instant approval, whereby physicians can simply record their patient’s medical criteria on the prescription.

Krieger also suggests implementing on the federal level several state Medicaid initiatives such as including limiting formulary changes to open enrollment periods or paying pharmacists an increased professional fee per authorization. Meanwhile, several states have implemented laws to streamline the process by standardizing prior authorization forms and allowing for electronic submission.

Step therapy, or so-called “fail first” policies, also represents a long-running challenge for rare disease patients. By requiring rare disease patients to take less expensive medications before gaining access to name-brand therapies, this mechanism can prolong patient suffering unnecessarily.

To address the lack of coverage and access for orphan drugs, researchers at Avalere Health suggest clearer information about exchange plans. Patients, they argue, should understand which plans cover the therapies they need – and, likewise, where utilization management strategies may hamper access.


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