Why Some Sufferers Don’t Get Better–The Psychosocial Barriers–Part III- Professional Stigma

As I mentioned in previous posts, one of the reasons that patients don’t get better is that the present treatments are generally mediocre.  This is due to lack of research over the past century. Things are getting better in that regard and the future looks bright.  But, the most relevant reason why sufferers aren’t getting better is that they don’t have the good care that is available now because the specialists, who know the most current treatments, are few and far between, and it is only getting worse.

Dr. Keith Campbell, a really smart and compassionate neurologist, (now retired), started the headache program at Mayo Clinic.  I only got to know him briefly as he was retiring as I was coming aboard.  Back in the early 90’s, (or late 80s as I can’t remember), he made the decision to devote his career to the headache sufferer.  When he did, his colleagues at Mayo Clinic called him to the side and said something like, “Dr. Campbell, have you gone mad?  You are throwing away a brilliant career.”

If you were visiting from another planet and were not under the influence of our present culture, Dr. Campbell’s choice would make perfect sense.  After all, migraine and the other headache disorders are as real, (speaking from a neuro-physiological standpoint), as MS, Parkinson’s disease, stroke or dementia.  However, headache disorders cause more disability than all the other aforementioned conditions combined. They are also more complex neurologically. However, in or present culture, headache disorders have a stigma because you cannot see them, or at least see them easily. I don’t mean to digress, but this attitude is based in the empiricism movement of the eighteenth and nineteenth centuries, where a conclusion was made that if you cannot measure something, then it is not real.

So how does this influence your chances of getting better?

The Demise of the Headache Clinic

Just a few years ago, there were five headache specialty clinics in the metro-Seattle area.  In just four years, that has dropped to one.  We are one of only four board certified headache specialist in the state, and only one of five in the entire Pacific Northwest.  The state of Washington is third from the bottom for the US in the ratio of headache specialists to people, 1:2,200,000.

There are two major headache research meetings in the US each year and one world-wide meeting every two years. I tried to attend all of these.  At each of the previous meetings I’ve heard of headache clinics closing or being reduced in size.  So, if the demand is so high and the need so great, why are specialist becoming harder to find?

There are two major controlling players in the delivery of medical care in America right now and that is the insurance companies and the federal government. The highest priority for both groups is cutting costs and providing the cheapest care.  The federal government also has some incentive to better the over-all health of it citizens.  The first steps of this process have many merits, such as cutting the fat by eliminating unnecessary tests and using cheaper generic medications. The problem for headache sufferers is that they, (and us, the headache specialists), have inadvertently been swept up in their nets of austerity.

Both the insurance companies and the US government agencies use a legally defined lexicon of words that were established many years ago.  Because of the decades of discrimination against headache sufferers, this lexicon does not contain “headache” as a medical specialty.  It is assumed that neurologists and pain specialists are the ones who take care of headache problems at all levels.

In reality, most headache problems are the result of complex neurological problems. It is also true that 70% of headache specialists are neurologists.  However, it is also true that less than 5% of neurologists are headache specialists, as defined by; 1) being board certified in headache medicine, 2) members of the American and International Headache Societies, 3) attended the major headache research meetings and 4) read the major headache research journals on a monthly basis.  Very few pain specialists, actually just a handful in the whole country, would qualify as a headache specialist.

However, because the legal lexicon that the government and private payers use, they do not recognize headache as a serious disorder or recognize headache clinics as legitimate, and therefore do not pay us well and often not at all.  It is for this reason that Group Health (GH)–HMO, our largest regional insurer, does not allow their patients to see us.  We have support from the brightest minds in headache that GH-HMO does not adequately care for the needs of complex headache patients in our region and that we are the only ones who offer this level of care.  It is estimated that there are 4,000 GH-subscribers who need our level of competency but are denied that care because the lexicon of words does not list “headache medicine” as significant, giving GH executives the false impression that the needs are being met.

This directly influences patients’ care, and certainly not just Group Health HMO subscribers, because it is very hard for headache clinics to survive when they are not reimbursed for the work they do.  Headache specialists, and we can personally vouch for that, are some of the lowest paid providers in the country and most of us do it out of compassion.  It is a constant struggle to avoid bankruptcy, even with full schedules. For this same reason large institutions, which used to have headache programs, are closing or reducing their size. They are not money-makers.

What Can the Patient Do?

I don’t want to steal from a popular slogan this year, but headache sufferers do matter.  By numbers and suffering they far exceed “warts” as a medical problem, but get less respect from insurance companies.  As an insurance subscriber, you should write your insurance company and demand that they give you the care you need.  They should stop having non-headache specialist, like their staff pediatrician, decide which treatments you are allowed to have and which ones you are not allowed to have.  They wouldn’t allow their staff pediatrician make such decisions for their cardiac subscribers or their cancer subscribers. They each MUST have board-certified headache specialist to advise them.  They must recognize headache clinics and pay for the treatments we provide, or all headache clinics will eventually go out of business during the age of the Healthcare Affordability Act.  Write your senators and congressmen/women.  I’ve been on the phone many times to Rick Larsen’s office advocating for my headache patients.

In the end, it is the patient who bears the brunt of this stigma, which is directed towards the provider.  Without access to the up-to-date care they deserve, it might as well be the 1950s when it comes to headache care.

J. Michael Jones, MPAS-C