(USA TODAY) -- As if migraine weren't bad enough (it can be disabling) or widespread enough (it afflicts nearly one in five Americans), it also comes with a stigma that often renders it invisible.
That's a social stigma that somehow even extends
to the medical research community, which largely has overlooked this
neurological disease for years - to the public detriment.
goes the plaint of Robert Shapiro, professor of neurology at the
University of Vermont, practicing neurologist and headache specialist.
Shapiro just published a study, based partly on research on a
Vermont family with a history of migraines, that identified a gene
mutation associated with the condition. It was the eighth gene that's
been pinpointed as connected to unusual forms of migraines. Most of the
others were found by researchers in Europe, which Shapiro said is way
ahead of the United States in this field.
Shapiro is a leading advocate for more funding of migraine and headache research in the U.S.
Migraine is a brain disorder that shows up as a syndrome. In the
absence of biomarkers, or physical signs that can be measured, doctors
have come up with diagnostic criteria, based on symptoms patients
describe. Headache is the best known symptom and one of the most common,
but it's possible to have migraine without one. Other common symptoms
include nausea and sensitivity to light, sound and touch and aura
Shapiro said migraine affects up to 60 million
Americans with "enormous disability consequences" and an economic cost
of $30 billion a year. Migraine headaches can last from four to 72 hours
and vary in intensity.
According to Migraine Research
Foundation, about 2 percent of the population suffer from "chronic
migraine," that is, migraines that occur 15 days or more a month.
"What happens if you have this problem and can't afford to
acknowledge it or you lose your job or you lose your family?" Shapiro
said. "Lost work is measured as absenteeism. It's also measured by a
condition called presenteeism, when people come to work because they're
capable of passing. If you look at the lost work productivity as a
consequence of headache disorders, 80 percent is presenteeism. These are
people who heroically soldier on, but they're ineffective. They don't
have any choice."
Shapiro, is one of only about 400
physicians certified as headache specialists by the United Council for
Migraines, Shapiro said, are "extremely individual, idiosyncratic.
What one person experiences is often quite distinctly theirs," and the
sufferer's same symptoms tend to recur from one attack to the next.
Infantile colic has been hypothesized to be a form of migraine,
Shapiro said. Research tracking people who had colic as infants found a
high prevalence of migraines among them in adolescence. The peak age for
migraines to appear is late adolescence/early adulthood.
One of the risk factors is heredity - migraine runs in families. Other
risks are believed to be environmental or substance exposures. Many
medical conditions also increase risk, including hormonal changes
(estrogen, for example), obesity, epilepsy, head trauma, sleep and
"Searching for genes is potentially a
very productive angle to understanding what causes this brain state and
therefore what might lead to potential therapies," Shapiro said.
Shapiro's recent research focused partly on a Vermont family with a
history of both of migraine and a rare sleep disorder. Family members
had a mutated gene that Shapiro and his colleagues were able to identify
and that they suspected might be linked to both conditions. When that
mutated gene was implanted in a line of mice, the mice litters exhibited
features associated both with migraine and the sleep disorder.
Might this gene discovery lead to development of treatment or prevention?
"We're quite a ways from that. How far away it's hard to say,"
Shapiro said, "but the advantage here is, this is the first gene among
the genes that have been found for migraine that isn't a code for a
structural protein ... it's actually a regulator of other proteins."
Just one class of FDA-approved drugs, including sumatriptan, has
been developed specifically to treat acute migraine, he said, but
medications used for prevention were all developed for other purposes.
One reason there aren't more targeted medications, he said, is that most
drug development by pharmaceutical companies is sparked by findings of
publicly funded research - research that is sorely lacking in the case
Six years ago, Shapiro
founded Alliance for Headache Disorders Advocacy, a consortium of 12
nonprofit organizations concerned with headache disorders. The aim is to
push for policies that will lead to improved treatment - more funding
for research from the National Institutes of Health, for example.
That has been a major thrust of an event the alliance has staged in
Washington every year, known as Headache on the Hill, which brings
doctors, other caregivers and headache sufferers from all around the
country to lobby Congress.
"I know a lot of members of
Congress have migraine," he said. "You cannot be very public about it."
Why? Admitting you have a disabling condition can be "a career-killer."
Rep. Michele Bachmann's campaign last year for the Republican
presidential nomination, whatever its other challenges, was not enhanced
by her acknowledgment that she suffered from migraine.
believe there will come a point, hopefully soon, when it will dawn on
enough members of Congress where they will realize they can be a hero by
pushing on an open door and saying, we have a problem that we can help
Migraine isn't the only neglected condition, he said.
"Cluster headache is a good case in point," he said. "Cluster
headache is widely regarded as the most severe pain a human can
experience - that's not hyperbole. It has a population prevalence that's
approximately the same as multiple sclerosis."
past decade, Shapiro said, NIH has directed $1.872 billion to multiple
sclerosis research, which he said is warranted. By contrast, less than
$2 million has gone to cluster headaches over the last 25 years. "It's
completely invisible," he said.
The advocacy campaign has
yet to bear much fruit at NIH. True, funding for headache research rose
26 percent from 2010 to 2012, to $24 million, but that's still less than
0.1 percent of NIH's budget and below what it should be, in Shapiro's
In a phone interview, Linda Porter, pain policy
adviser at NIH, pointed to the increase in headache research funding but
added that "we totally recognize that headaches need more funding." The
challenges are, she said, that NIH budgets have been flat and the
headache research community is a small one.
First Coast News