Michael Okun, MD: Need for Expanded Insurance Coverage for Rare Diseases


The executive director of the Norman Fixel Institute for Neurological Diseases discussed the role insurance companies play within the system for approving neurological devices for rare diseases.

"They need to be pushed to say, ‘yes, you do have that burden.’ I would argue this is not necessarily a violation, but a direct conflict to the pre-existing conditions within the Affordable Care Act, because it appears to me that they’re not offering a treatment for a pre-existing condition.”

Insurance companies play a major role in the care process for patients with neurological disorders, mainly because they have the final say on whether to deny or accept coverage for treatments. Neurological therapies have traditionally been developed to appease the “many,” leaving those with rare diseases unable to reap the same benefits from the system. This can be applied to insurance coverage, which has typically favored larger patient populations instead of those with rare diseases, which are characterized by having less than 200,000 people with the same disorder.

The “right-to-try movement,” which essentially allows patients to attempt a new treatment strategy or procedure while having coverage, has been buried within the system. In a recent viewpoint paper, Michael Okun, MD, executive director, Norman Fixel Institute for Neurological Diseases, explains that insurance companies have some fault in the approval system for neurological devices for patients with rare diseases.

If insurance companies are not going to cover the costs associated with these devices, patients will be forced to make the decision to seek other options, and in some cases, there are no other options. Okun’s paper lays out a multitude of issues that lie within the system, including the unwillingness for these carriers to cover payments from humanitarian device exemptions (HDEs), modifications to the Patient Protection and Affordable Care Acts, and overall change of mindset from industry leaders who may be hesitant to invest money towards these devices.

NeurologyLive sat down with Okun to get his thoughts on whether insurance companies should take the brunt of the blame, how the system needs to change, and why multi-level cooperation is necessary for this change to come about.

Okun MS, Giordano J. Reforming the process for deep brain stimulation and neurologic device approval in rare diseases. JAMA Neurol. published online November 9, 2020. doi: 10.1001/jamaneurol.2020.4232
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