The Medicare Policy That Disrupts Care for Headache, Movement Disorders Patients

A new Medicare policy is having unintended consequences for people with migraine disease and movement disorders, recent survey findings reveal.

The national survey captured feedback from nearly 300 patients and health care providers about a requirement imposed by the Centers for Medicare and Medicaid Services. The agency implemented in 2020 to require prior authorization before each injection of a botulinum toxin, a treatment used for migraine disease and certain movement disorders.  

Survey findings reveal that, while the policy is meant to cut costs, it is limiting access, creating treatment delays, and causing both patients and providers to struggle unnecessarily.  

Survey Findings

Patients indicated that they are experiencing delays and disruptions to care as a result of the prior authorization policy. Patients reported:

  • 54% they had to seek additional visits with their provider
  • 29% they were forced to postpone appointments
  • 56% their condition worsened waiting for therapy.

Health care providers echoed patients’ concerns. They reported:

  • 78% patents who benefit from botulinum toxin injections can’t access them with the new rule
  • 82% patients have experienced additional headache days
  • 65% patients are going to the emergency room because they can’t receive timely treatment.

Health care providers’ survey responses also showed how the Centers for Medicare and Medicaid Services requirement was creating staffing and logistical problems in their clinics.

The survey was conducted October-December 2020 by The Headache & Migraine Policy Forum in partnership with the Movement Disorders Policy Coalition and the Alliance for Patient Access. 

Perspectives on Survey Findings

Advocates voiced their own concerns during a webinar hosted by the organizations that administered the survey.

Janet Hieshetter from the Dystonia Medical Research Foundation emphasized the rule’s impact on patients. “A patient who has been on botulinum toxin for years was denied access when the rule first took effect,” Janet recalled, adding “Now the doctor’s office can’t get her in until October.” 

William B. Young, MD, a headache specialist, said of the policy’s impact, “We’ve had to hospitalize patients and give them alternative therapies because their treatment was delayed for nearly a month.”

Lindsay Videnieks of The Headache & Migraine Policy Forum noted the difficult timing of the policy, saying, “Unfortunately, the rule was implemented in July 2020 at the peak of a global pandemic.”

About Botulinum Toxins

Botulinum toxins are an injectable biologic that have been used as the firstline treatment for certain movement disorders for decades. More recently, the medications were discovered to effectively treat migraine disease as well.  

Due to increased awareness of migraine disease, more people have sought diagnosis and treatment in recent years. The Centers for Medicare and Medicaid Services, however, interpreted the increased utilization as a sign of fraud. The agency then began requiring prior authorization before every individual injection. 

To learn more, read “Prior Authorization and Treatment Delays.”

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