Alliance for Patient Access / IfPA’s Patient Access Policy Blog / Parkinson’s Patients Face Treatment Delays

Parkinson’s Patients Face Treatment Delays

A guest blog by Dr. Michael Rezak, M.D., Ph.D.

During a recent visit with one of my Parkinson’s patients, we decided he was a good candidate for deep brain stimulation. The treatment can help relieve severe tremors, stiffness and slowness, hallmarks of the disease. But when my patient’s health insurer got involved, what should have been a straightforward treatment got unnecessarily complicated.

Implanting the neurostimulator device and the battery typically involves two procedures. The first surgery to embed the device went well. But then the patient’s insurance company refused to approve second procedure to install the battery. My office made first one phone call, then another on this patient’s behalf. The insurer demanded additional written justification for the procedure. We complied.  Then, more phone calls.

Finally, the patient’s insurer relented. In the interim, however, my patient forfeited weeks of treatment that could have really improved his quality of life.

I’m telling you this story now because it’s Parkinson’s Awareness Month. We know this month is critical for disease state awareness. But this month, and every other month, we also should recognize how often treatment delays happen, not just with advanced treatment, but with medications that have been around for many years. This is a serious problem for people with this progressive neurodegenerative condition.

More than 1 million Americans live with Parkinson’s in the U.S., and each of them works with a physician to develop a unique plan of care. Yet for many patients, insurance companies interrupt this carefully crafted effort by injecting barriers like prior authorization and step therapy. These tactics prolong the time patients experience frustrating symptoms like slowed movement, muscle stiffness and slurred speech.

The story I shared involved overcoming a barrier for a surgical procedure, but as I noted insurers apply barriers to medications too. I recently had another patient who, despite taking the same medicine for 15 years, had his prescription withheld until I completed another prior authorization.

I pride myself on being a fierce advocate for my patients, so I am willing to submit endless forms on their behalf. Thankfully, I also have ample staff support. Last year, I asked my clinic nurses how much time they spend on pre-authorizations, denials and appeals. I was dismayed to learn they spend about 40 percent of their time on these activities, but I was not surprised. I am dismayed, though, to think how many hours and how much energy these tasks take away from patient care.

In addition to the work of my staff, I find myself waiting on the phone for hours to engage in a “peer to peer” call with an insurance company physician. Often, this physician may not even be a neurologist.  Yet I have to justify my treatment decision to gain his or her approval for my patient’s procedure or medication.

Sometimes, despite all my efforts, I am unsuccessful, and the insurance company keeps my patient from receiving the treatment I know they need. I imagine that thousands of Parkinson’s patients across the country face the same fate.

We cannot become discouraged. We must continue raising our voices, advocating for change and supporting ongoing research that can improve the lives of those with Parkinson’s.

In just the last year, the FDA approved two new medicines for treating Parkinson’s. These medications are helpful; one bridges patients to their next dose of medication when the most recent one begins wearing off, and the other minimizes side effects caused by long-term treatment. As patients benefit from these, researchers must continue searching for a medication that slows the progress of the disease, or even cures it.

And we must continue supporting patients’ access to treatments and medications. People who have Parkinson’s deserve the opportunity to maintain their highest quality of life for as long as they possibly can.

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Dr. Rezak is the Director of the Movement Disorders and Neurodegenerative Diseases Center at Central DuPage Hospital and a member of the Movement Disorders Policy Coalition

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