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Some people living with migraine disease and movement disorders are finding it takes longer to get treatment, if they can even access it at all.

That’s because a new rule requires health care providers to get insurers’ approval before treating Medicare patients with a botulinum toxin. Typically injected in a health care provider’s office, botulinum toxins treat overactive muscle movement or hyperactive nerves, such as those that cause spasticity and cervical dystonia. They are also commonly used for blepharospasm, a condition that causes involuntary blinking and eyelid spasms, as well as chronic migraine. 

Left untreated, these conditions can significantly impact patients’ lives and livelihoods.  And that is what has happened since July 1, when the Centers for Medicare and Medicaid’s rule took effect. 

Getting prior authorization is a time-consuming process, and providers report that patients are suffering while they wait.

“We have begun seeing delays in access to an appropriate, FDA-approved therapy for our patients,” reads a letter signed by nearly 20 neurology and movement disorders specialists from the Alliance for Patient Access. “When patients cannot access continued botulinum toxin therapy,” the health care providers explain, “they are subject to symptom re-emergence, causing unneeded and avoidable pain and disability.” 

The rule has also strained health care providers. They and their staff are completing throngs of paperwork to prove the injection is medically appropriate for each and every patient. Yet, despite providers’ efforts, many requests are denied. Every denial requires an appeal – and still more paperwork. Some offices have repurposed staff, while others have hired more. Health care providers, too, are spending more time at their desks and less time on patient care. 

The chain of access barriers stems, ironically, from an increased use of botulinum toxin in recent years. While no evidence has been provided, the Centers for Medicare and Medicaid Services interpreted the increased use as fraud. 

The migraine community disagrees. Patients and advocates see increased use as evidence that diagnostics and treatment options have improved, and that fewer people are suffering from untreated migraine disease. 

“Thanks to increased public awareness and a significant effort by the migraine community to reduce stigma, migraine disease is now more accurately diagnosed and treated than in years past,” said Lindsay Videnieks, executive director of The Headache & Migraine Policy Forum. These changes have led to “a reasonable and necessary increase in botulinum toxin injections for Medicare patients,” she added.

The new rule’s timing is especially problematic. 

COVID-19 has strained patients and providers in previously unimagined ways. The pandemic has complicated access to health care facilities, transportation and even some patients’ financial stability. The new prior authorization requirement compounds these challenges. 

Policymakers can right this wrong by suspending the rule for more thorough review. Patients and providers have higher-than-normal stress levels right now, without this rule’s additional burden.

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