The Marginalization of the Headache Sufferer

Today I learned of yet another major headache clinic, this time in the Midwest, closing its doors for good. There are several reasons for this. From what I have heard, the director took a job with the pharmacological industry and he could not find any person willing to fill his shoes. The reason he left headache medicine, I am sure, has to do with the constant struggle to get services paid by insurance companies. The reason that no one wanted to fill his shoes are probably the same.

This is not about the headache specialist, but about the patient. There is a large chasm between what a general neurologist or pain specialist knows about headache and the headache specialist. For centuries, headache patients have been marginalized. However, headache disorders cause more disability than all other neurological diseases combined.

The problem is, the federal government is the one who recognizes medical specialty areas. While they have neurologists and interventional pain management specialists on the list, they do not have headache specialists on the list. They assume that headache is covered by the other two specialties. It is not at all.

Let’s compare headache care by a neurologist to that of epilepsy. In a neurology residency programs, at least three months are totally devoted to training in epilepsy. If a neurologist wants to go further, they can devote at least an additional year to that sub-specialty.  On the other hand, according to neurologists I’ve talked to, only 3-10 hours are spent discussing headache disorders in the entire three year program. Interventional pain specialists have virtually no training in headaches disorders in their training.

This is grossly unfair to the headache sufferer. When I came to western Washington fifteen years ago, there were 5-6 major headache centers. Now, there is barely two and each have waiting lists of 8-9 months.

There have been movements to bring this to the attention of society, but those movements have fallen on deaf ears. The insurance industry has NO interest in adding more care that they will have to pay for. Talking to the government is like talking to a convoluted dinosaur. I have reached out to legislators many times. I have had call backs from Rick Larsen’s office a couple of times, but we didn’t get very far.

Patients must demand from their insurance companies the right to see someone who takes them seriously and who knows what they are talking about. We need to get stories in the news. We need to get headache disorders in the media. Maybe, in time, we can change things. Headache sufferers deserve better.