Migraine and other severe headache disorders affect about a billion people worldwide each year, but awareness of these conditions is insufficient, and sufferers are often stigmatized by healthcare providers and by society in general. As a result, people often go years without a diagnosis or do not receive appropriate treatment. And, the personal preferences of patients are seldom considered in current treatment guidelines.
But in September of 2017, experts from around the world met in Vancouver, Canada, to put patients front and center when it comes to headache care. A report summarizing the initiatives that came out of the meeting was published June 8, 2018 in Cephalalgia, the official journal of the International Headache Society.
“This was the first time that stakeholders representing all aspects of migraine and headache disorders gathered to recognize our shared goal of improving outcomes for patients. This included leaders from the World Health Organization (WHO), the pharmaceutical industry, advocacy groups, medical professional societies, and health economists. It was an initial opportunity for everyone to say, ‘OK, we all understand this is a big problem and we ought to get organized to do something about it,’” says Robert Shapiro, a headache doctor and researcher who attended the meeting but was not an author of the report. (See RELIEF related podcast with Shapiro here).
The first step the meeting attendees took to address the gap in headache care was to form the International Headache Society Global Patient Advocacy Coalition (IHS-GPAC), a new entity whose primary goal will be to promote the interests of patients with headache disorders and to challenge the pervasive stigma against them. IHS-GPAC laid out four additional goals: to improve patients’ reliable access to competent care; for healthcare professionals to have access to appropriate training in headache care; to create standards to ensure that patients receive appropriate diagnosis and treatment; and to gather more patient-reported outcomes such as how they rate their quality of life.
Shapiro says that reducing stigma will be critical to achieving the other goals.
“Finding ways to permit people to advocate in this realm has been one of the principal barriers to ensuring access to care. So we are trying to understand why stigmatizing attitudes are so pervasive.”
The group also convened at a second meeting in January 2018 in London, UK.
A neurological disease
Everyone has experienced a headache at some time in their lives, be it from the flu, a head injury, or simply getting overheated. But those headaches—and the many other forms of headache that most of us are familiar with—bear little resemblance to so-called primary headache disorders. Primary headaches include severe headache disorders such as cluster headache and migraine. Migraine is a condition that also causes nausea, vomiting, severe fatigue and extreme sensitivity to light and sound.
Unlike secondary headaches, which result from infection, injury, cancer or other conditions, primary headaches have no identifiable underlying cause, but are increasingly thought of as diseases of the nervous system.
“They are neurological diseases in and of themselves,” says Elena Ruiz de la Torre, an author of the new report and a headache researcher based in Valencia, Spain. She is also executive director of the European Migraine & Headache Alliance, headquartered in Brussels, Belgium.
Ruiz de la Torre, who suffers from migraine herself, says that the nature of migraine and other primary headache disorders makes them invisible to society, which has contributed heavily to inadequate treatment.
“When you suffer an attack, you cannot move from your bed, not even to go to the doctor,” she says. “And nobody sees us in that situation—only people who are very, very close. So that makes it very difficult for society to understand the disease, because when they see us after an attack, we look fine again.”
For most people with migraine, attacks may happen only occasionally. But five percent of people with migraine have what is called chronic migraine, with headaches on 15 or more days per month.
“Because one attack can last four to 24 hours, if you have 15 per month, that’s the whole month. These people are completely disabled, they’re always suffering from an awful headache, but they are hidden. They can’t go out of their home to complain or live a normal life,” according to Ruiz de la Torre.
Now in her 50s, Ruiz de la Torre says, “I have survived the worst years of my migraines,” though she still has daily headaches. The disease is at its most debilitating from roughly age 20 to 40, “when you need your brain and your energy to live, to raise kids, to work,” she says. “Those years take all your energy, and that’s when migraine attacks you most aggressively.”
Women are affected by migraine at about three times the rate of men, whereas mainly men are affected by cluster headache, a condition that includes excruciatingly painful headaches that occur in “clusters” for about six to 12 weeks at a time.
Stigma prevents care
Because of the stigma towards headache sufferers, patients are often described as malingerers, or doctors may downplay the illness.
“They’re told it’s not a serious condition,” Shapiro says. As a result, people with primary headaches “often very quickly adopt a strategy of hiding them. They experience discriminatory barriers to obtaining disability insurance. They tend not to take time off from work because they are afraid of losing their job, and they also don’t seek care.”
“This has a vast implication for mobilizing grass roots advocacy movements,” he continues, “because the people most impacted are understandably most reluctant to be associated with the condition.” In addition, the illness prevents them from doing the advocacy work.
The aim of IHS-GPAC is to change that, says Ruiz de la Torre.
“Our main goal is to activate and motivate patients—to help them realize they have nothing to hide, so they can go to their own doctors and ask for the best treatment available.” That sort of advocacy will improve treatment that patients get, she says.
One way the IHS-GPAC is trying to break down stigma is to find a way to help people without headache relate to the issue, following the lead that other health-related movements have taken. For example, advocates for AIDS patients framed proper treatment and care of HIV as a human right. And advocates for breast cancer treatment and research framed breast cancer as a women’s issue.
So what should people understand about headache?
“My dream would be for people without headaches to have respect for those who do suffer from them, and to not always be questioning, ‘are they telling the truth, is it real or not?’ We need support, respect and flexibility,” Ruiz de la Torre says.
“The view in society is that we are complainers, we are weak, or that we use migraine as an excuse.” But in fact, she says, people with migraine “never leave something undone for tomorrow, because we know we might have pain.”
Migraine and other primary headache disorders are very debilitating, Ruiz de laTorre says, “but only temporarily. We are disabled only when we have an attack. When we are pain-free, we can move mountains.”
Headache around the world
Although some people have framed migraine and other primary headache disorders as a problem of the developed world that does not affect underdeveloped nations, Shapiro says, “that is not the case.” Public health studies suggest that people suffer from primary headaches worldwide at similar rates.
“There is some evidence that sub-Saharan Africa has a slightly lower prevalence and that it’s slightly higher on the Indian subcontinent” compared with the rest of the world, according to Shapiro. Genetics probably accounts for some of the regional variability, “but we don’t really understand that well enough yet,” he says.
“Patients’ needs are exactly the same” around the world, says Ruiz de la Torre. “The only thing that changes is their access to treatment. Some areas have older treatments, some have more advanced treatments.”
Treatments are particularly limited in developing countries. “So access is not the same, and we are working on that,” says Ruiz de la Torre.
“I’m obviously encouraged and optimistic that this issue has finally garnered international attention,” says Shapiro. “Time will tell over the next decade how much we achieve, but it’s really a long overdue direction.”
“I will do all I can to leave a better life to my grandchildren” should they develop migraine, Ruiz de la Torre says. What would that look like?
“A more friendly environment, better treatments, and better policies” to support people with headache. And if possible, she says, “a higher understanding of the causes of these neurological disorders.”
Stephani Sutherland, PhD, is a neuroscientist, yogi, and freelance writer in Southern California.
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