Shortage of headache specialists worse in some states

Currently there are 416 UCNS-certified headache specialists in the U.S. to treat over 36 million migraine patients. Simple math would say that’s 1 doctor for every 86,538 patients2.  Unfortunately for some patients, the math gets even worse. A recent study published in Headache2 revealed an uneven distribution of physicians, with more specialists available in higher income areas. The study determined the doctor to patient ratios in each state, plus the District of Columbia. It also revealed a number of states with two or fewer specialists.2

The big picture

Even in states with the best doctor-patient ratios, the shortage of qualified doctors is glaring.2

District of Columbia 1 doctor to 31,419 patients
New Hampshire 1 doctor to 33,482 patients
New York 1 doctor to 34,907 patients
Nebraska 1 doctor to 35,740 patients

It gets even worse in these states.2

Oregon 1 doctor to 384,232 patients
Mississippi 1 doctor to 290,761 patients
Arkansas 1 doctor to 287,856 patients
Kansas 1 doctor to 278,755 patients

States with the highest number of headache specialists2

New York 56   California 29
Ohio 29   Texas 25
Florida 24   Pennsylvania 23

States with the fewer than TWO headache specialists2

Alabama 2   District of Columbia 2
Maine 2   Nevada 2
Rhode Island 2   Arkansas 1
Idaho 1   Kansas 1
Mississippi 1   New Mexico 1
Oregon 1   South Dakota 1
Vermont 1   Alaska 0
Delaware 0   Montana 0
North Dakota 0   South Carolina 0
Wyoming 0  

Even states with higher doctor-patient ratios have few specialists.  For example, the District of Columbia has the highest doctor to patient ratio. Yet there are only two headache specialists serving an estimate of over 62,000 migraine patients. To make matters worse, there is no consensus on a plan to increase the number of neurology residency programs, let alone headache specialty residencies.

Prevalence

According to the 2007 AAMP study, nearly 12% of US population meets criteria for a diagnosis of migraine. Of the more than 36 million migraineurs in the U.S. most (62%) have 1-4 headache days per month and over half are bed-ridden for the duration of an attack.  Despite the fact that preventives may reduce the risk of progression to chronic migraine, 4.7 million (roughly 13%) of them currently take preventive medicine. Over 15 million people who suffer with migraine have never taken preventive medication.1

The AAMP study defined patients who should be offered preventives as those with the following criteria:1

  1. 6 or more headache days per month regardless of impairment
  2. 4 or more headache days per month with some impairment (able to function at reduced level)
  3. 3 or more headache days per month with severe impairment (cannot function, need bed rest)

Over 14 million (40%) migraineurs meet criteria for preventive treatment, yet only 4.7 million (13%) currently take preventives. Even fewer have a preventive regimen that is actually working to reduce the frequency and severity of their attacks.1 What the study does not reveal is that successful treatment is considered a 50% improvement in symptoms and all the drugs used to prevent migraine are hand-me-downs from other specialties. When the options are anti-epileptic drugs, antidepressants, or anti-hypertensives, people get nervous. All three classes have the potential for serious side effects. Perhaps if there were a migraine-specific preventive, more people would be willing to give it a try.

Only a fraction (10-15%) of migraineurs see a neurologist,  despite the fact that a headache specialist is the most qualified to treat them.1 Only 1.4 million (4%) actually see a headache specialist. That’s over 3,000 patients per current specialist! A typical wait time for an initial appointment is 90 days or more. Most established patients must wait 3-6 months between appointments.

As patients become better informed about migraine and its treatment, demand for neurologists is expected to grow faster than supply. With current specialists already over-worked, this new demand will make it even more difficult for migraineurs to access care.

Not all specialists are certified

Not every headache specialist is UCNS certified. Many doctors were headache experts long before the UCNS certification was created. 2 Many have chosen not to pursue certification, in part because there is no financial gain in obtaining certification. For an established doctor, the time and money involved in certification may or may not be worth it.

This can complicate matters for patients. With a shortage of certified headache specialists, millions of patients will be forced to look elsewhere for treatment. Many will seek help from their primary care doctors or general neurologists. Some will visit uncertified “headache and pain” clinics. The shortage creates an opportunity for ambitious doctors to claim a specialty in headache medicine without certification of their expertise.

The average patient cannot determine which of these doctors has sufficient expertise and which are ill-equipped to effectively treat migraine. The shortage and cost barriers open door for unscrupulous practitioners to claim headache expertise when they actually have none. They prey on desperate patients with false promises of a cure. In addition to the shortage of qualified doctors, there is a woeful lack of public information about migraine. Many people have false beliefs about the condition, its causes, and treatments.

One way to help is through patient education. By offering accurate, timely information direct to patients, they become empowered consumers of health care. An educated patient can then evaluate their health care options and make informed decisions on which providers are best suited to treat their migraine disorder.

What to do if you can’t get access to a true headache specialist

  • Get educated. Migraine.com is a great place to start.
  • Look for a doctor who is teachable and willing to collaborate with a specialist.
  • Look for a doctor who is an uncertified headache expert and test his or her knowledge.
  • Consider behavioral health with a specialty in pain management.
  • Consider traveling to a headache specialist for occasional consultations.
  • Keep a meticulous headache diary.
  • Identify and avoid your triggers where possible.
  • Limit acute medication to 2-3 times per week.
  • Avoid use of narcotics or opioids whenever possible as these pose a greater risk of causing Medication Overuse Headache.

Personal experience

My own doctor is not UCNS-certified. He is a neurologist and psychiatrist who really knows headache medicine. He’s also not afraid to make referrals, admit he was wrong, or doesn’t know the answer. He listens and he cares. Each appointment lasts for at least 30 minutes and he’s never double-booked. He is also a migraineur so he understands the everyday challenges we all face. Most importantly, I trust him.

In 40 years I have gone through 4 primary care doctors, 5 neurologists, 3 chiropractors, 4 massage therapists, 2 physical therapist, 2 respiratory specialists, 1 allergist, and 1 plastic surgeon in order to find my current specialist.

Be prepared to go through a lot of doctors before you find the right one. Just don’t give up and don’t settle for less than you deserve.


This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
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