These days, I find myself using some of the same words to describe Parkinson’s as I do to describe the experience of physicians like me who treat patients with the disease. It’s a sad reflection on current health insurer practices.
The disease itself, for example, I would describe as progressive and debilitating. Early symptoms slowly progress into more crippling ones. Patients face tremor, speech and gait complications. Over time, they may also develop more severe comorbidities like Parkinson’s psychosis and blood pressure fluctuations. The disease robs patients of their autonomy, making them increasingly dependent on others for daily needs.
The irony? The clinicians who treat them are fighting for autonomy too, in their own way. At every stage of treatment, it is insufficient to use our knowledge and training to make a determination of what’s right for our patient. We have to convince the patient’s health insurer that our prescription is justified. We have to fight them when they disagree – appealing, arguing and appealing again.
I think of a Parkinson’s patient who qualified for deep-brain stimulation, a surgical procedure that uses electrical signals to the brain to decrease symptoms. The insurance company had approved the procedure. We implanted the lead in the patient’s brain. But when she came back in to get the battery placed? The insurer refused to authorize it.
We face similar barriers with medications. I can know with certainty that a particular medicine is right for my patient. But the insurer requires step therapy. So my patient must first take a less expensive drug, sometimes one that’s 20 or 30 years old and fraught with side effects.
We waste months on this exercise. The patient feels helpless. So do I. Perhaps that’s why I find myself using militaristic words such as “battle” and “fight” when describing the barriers that insurance companies place between patients and optimal treatment.
Keep in mind the progressive nature of the disease. Months wasted are months lost to disease progression. Also, keep in mind the multifaceted nature of this disease. Patients experience its effect on their mood, blood pressure, sleep, balance and agility, emotional well-being, even their bladder and bowels. Selecting the right medicine at the right time is an exact science, not a rote exercise in cost- cutting.
It doesn’t stop there. I have physical and speech therapists call to tell me they can’t see my patients. Why? The insurance company caps the number of sessions it will cover. So my patients’ time with therapy is up, regardless of whether or not they would benefit from continuing.
Like the progression of Parkinson’s, the slow creep of insurers’ interference to nearly every aspect of treatment feels relentless. I fight back, appealing insurers’ decisions, providing page after page of paperwork and records to defend my patient’s right to access. I take time for peer-to-peer reviews, even pleading my patient’s case to an administrative judge.
It doesn’t always work out. On those occasions I see my patients, many of whom are elderly and debilitated, struggle to learn that the treatment they need is out of reach.
Desperate to treat our desperate patients, we clinicians are struggling in our own way. I believe that the added burden of dealing with insurance barriers is a driving force in unprecedented rates of physician burnout. It’s no surprise that neurologists are high in the ranks of those buckling under the pressure.
Parkinson’s disease forces patients on a slow and painful decline. It seems insurers are bent on pushing the patient-provider relationship down a similar path. But there’s a critical difference. While we haven’t arrived at a cure for Parkinson’s, I do believe there’s a cure for insurance barriers. That cure is better policy. Policies that protect patients, respect doctors’ training and knowledge, prioritize patient’s access to necessary treatment and block insurers from trampling on the patient-doctor relationship.
This Parkinson’s Awareness Month, I will not retreat from this battle. I urge advocates and policymakers to find those solutions, to fight for them and to make them a reality.
Michael Rezak, M.D., Ph.D. is a member of the Alliance for Patient Access and director of the Movement Disorders Center at Vassar Brothers Medical Center in Poughkeepsie, New York.
This post is part of IfPA’s “By All Accounts” blog series. Each month, a different guest author – and a different story – adds a new piece to the common narrative of how insurance practices meant to control costs are instead hurting patients.