This year’s World Brain Day, July 22, is aimed at raising awareness of the most common brain disease in the world: migraine. It affects more than 38 million Americans and is the second leading cause of disability worldwide.
Patients shouldn’t have to endure debilitating symptoms day after day when there is a medication that could help them. Yet that’s what’s happening in Mississippi to people with migraine.
“It was so bad. It just wouldn’t quit.” Sara, a new patient, was sitting in my office describing a migraine attack that had led to a recent hospitalization. Except it wasn’t exactly the migraine that led to hospitalization. It was, I found out, an attempted suicide, prompted by the relentless impact of chronic migraine.
Migraine disease exists on a spectrum, presenting patients with different frequencies of attacks, whose duration and effect vary from person to person. Treating migraine disease is, therefore, an exercise in mixing and matching, trial and error.
During the past year, there’s been a clear shift in how patient organizations are engaging with the Institute for Clinical and Economic Review (ICER) and its value assessments of new, and often first-of-their-kind, medicines.
Insurance coverage of triptan medications varied widely between health plans and imposed quantity limits, step therapy, prior authorization requirements, and multiple co-payment tiers, according to findings published in the July 9 online issue of Headache.
"The complexity and convolution of finding and understanding much of the insurance information was a bit dismaying," first author Mia T. Minen, MD, chief of headache research in the division of headache medicine at New York University Langone Medical Center, told Neurology Today in an interview.
Dr. Minen noted that given the overuse of opioids in the US, "key players might realize that they should work on improving access to non-opioid therapies… In addition, with the increasing likelihood of more expensive migraine medications coming to the market, such as the calcitonin gene-related peptide antagonists, insurance companies might decide to lower the barriers of these cheaper alternatives," she said.
Read more at Neurology Today.
Of the 37 million Americans who suffer from migraines, a few million progress to a chronic stage of having them more often than not. Stanford investigators hope to find out why.
Read more at Stanford Medicine News Center.
On July 4, my husband handed me the front page of the New Haven Register and said, “You could have written this.” It contained the article concerning the hidden challenges of suffering from migraine.
Read more of this letter to the editor from the New Haven Register.
Some wore shades, others “showed purple.” But advocates across the board used June’s Migraine & Headache Awareness Month to draw attention to a condition whose patients face debilitating symptoms and far too few treatment options.
Their efforts revealed several common themes.
More at Institute for Patient Access
In the past few months, I’ve had so many wonderful opportunities to be part of events or have discussions about the trials and tribulations of those who have migraine or cluster disease. The word patient advocate kept coming up and I’ve been asked how I became a voice in our community.
When I became chronic, I didn’t start out thinking that a big part of the energy that I do have would be in patient advocacy. I just needed a purpose and I found it in writing. That opened up some doors for me to become even more engaged. I think I’ve also been in the right place at the right time. When I lived in DC, several events and conferences were held there, so it was easier for me to attend. Now I look forward to those events each year and try to travel to attend.
Read more from Katie Golden at Migraine.com
Among collegiate student-athletes with a history of concussion, almost one in three males and nearly one half of females reported having a history of migraine, according to a new report. But the researchers cautioned that the data are insufficient to support any relationship between sport-related concussions and migraines or other headaches.
Read more at Neurology Today.
For chronic migraine patients, the only thing better than making a headache stop is preventing it altogether. And new research suggests that patients may soon have new options for doing just that.
Phase III clinical trials for a biologic drug called “fremanezumab” show promising results, the pharmaceutical manufacturer Teva announced last week. The therapy provided a statistically significant reduction in the number of headache days that trial participants experienced during the month following initial dosing. Patients also demonstrated improvement in response rate and efficacy. Responses were compared against placebo.
The drug targets calcitonin gene-related peptide, or CGRP, which is involved in the experience of migraine pain. Several other variations of CGRP inhibitor drugs are also in development, though fremanezumab is the first to demonstrate efficacy for quarterly dosing.
Migraine is most often experienced as a severe, throbbing headache accompanied by vision disturbances and, for some, vomiting, nausea, and sensitivity to light and sound. Nearly one in every four U.S. households includes someone with migraine. The disease disproportionately affects women and is number one cause of neurological disability in the United States.
“CGRP drugs could allow patients to reclaim control over their day-to-day lives, limiting migraine’s ability to disrupt their work and interfere with their family responsibilities,” noted Lindsay Videnieks, director of the Headache and Migraine Policy Forum. “We urge regulators to give these therapies their full consideration in a timely manner.”
The drug’s manufacturer plans to submit a Biologics License Application to the U.S. Food and Drug Administration later this year.
BOSTON — More than 1,000 migraine and headache specialists from around the world will gather in Boston this week to present the latest data on new therapies for headache disorders.
The American Headache Society's 59th annual scientific meeting will be held Thursday through Sunday at the Westin Boston Waterfront Hotel.
Read more at The Boston Herald.
“Wearing sunglasses indoors is increasing your sensitivity to light.” My wife and I were floored when her headache specialist made this statement. Chronic migraine had made her so sensitive to light that she had to wear sunglasses indoors. During an attack, photophobia increased her misery. Sunlight, light from computer monitors and TVs, and fluorescent lights triggered even more attacks.
Read more at National Headache Foundation.
Move Against Migraine illustrates the hidden truth about migraine
FOR IMMEDIATE RELEASE: [MOUNT ROYAL, NJ, March 20, 2017] – The American Migraine Foundation (AMF) announced today that it is launching an initiative – Move Against Migraine – to empower the more than 36 million Americans living with migraine to advocate for themselves to find the support and treatment they need. Given the lack of awareness of the varied symptoms that can occur during migraine attacks and the long-standing stigma associated with this disease, less than 5% of those with the most debilitating form of migraine have sought help, received a diagnosis, and been treated.
Read More at American Migraine Foundation.
Chronic migraine is seldom a lone condition, explains a new white paper from the Headache & Migraine Policy Forum. And when chronic migraine patients suffer from common comorbidities such as depression or hypertension, their medical costs rise while their productivity suffers.
Authored by former Department of Health and Human Services official Kenneth E. Thorpe, Ph.D., the paper is entitled “Prevalence, Health Care Spending and Comorbidities Associated with Chronic Migraine Patients.” It captures analysis of 2008-2013 Medical Expenditure Panel Surveys, which are conducted by the Agency for Healthcare Research and Quality.
Key findings include:
Prevalence. Chronic migraine sufferers are predominantly urban, white and female – working full time and living in the South.
Comorbidities. Nearly 90 percent of chronic migraine patients have at least one other chronic condition. The most common include depression and anxiety; hypertension; and arthritis.
Cost. The cost of treating patients with chronic migraine and additional chronic diseases is eight times higher than the cost of treating patients with only chronic migraine. Likewise, the cost of treating conditions such as arthritis, depression, anxiety and diabetes is higher if the patient being treated also suffers from chronic migraine.
Productivity. More than 20 percent of chronic migraine sufferers are disabled. That figure rises as the number of comorbid conditions increases.
The paper argues that these findings justify “whole-person care,” a point that Dr. Thorpe reiterated at Tuesday’s Capitol Hill policy forum sponsored by the Headache & Migraine Policy Forum. “If you’re really treating these conditions simultaneously and interactively,” Dr. Thorpe explained, “you’re going to get better outcomes across the board.” The approach could yield “substantial health dividends,” the paper notes.
The Headache & Migraine Policy Forum advances public policies that promote accelerated innovation and improved treatments for headache and migraine sufferers.
The event coincided with the 10th annual Headache on the Hill, an advocacy effort organized by the Alliance for Headache Disorders Advocacy. Headache on the Hill brings more than 125 health professionals, migraine advocates and patients to Capitol Hill to raise awareness about the impact of headache and migraine disorders and to seek increased research funding.
We devote vast resources to intensive, one-off procedures, while starving the kind of steady, intimate care that often helps people more.
By 2010, Bill Haynes had spent almost four decades under attack from the inside of his skull. He was fifty-seven years old, and he suffered from severe migraines that felt as if a drill were working behind his eyes, across his forehead, and down the back of his head and neck. They left him nauseated, causing him to vomit every half hour for up to eighteen hours. He’d spend a day and a half in bed, and then another day stumbling through sentences. The pain would gradually subside, but often not entirely. And after a few days a new attack would begin....
He saw all kinds of doctors—primary-care physicians, neurologists, psychiatrists—who told him what he already knew: he had chronic migraine headaches. And what little the doctors had to offer didn’t do him much good. Headaches rank among the most common reasons for doctor visits worldwide. A small number are due to secondary causes, such as a brain tumor, cerebral aneurysm, head injury, or infection. Most are tension headaches—diffuse, muscle-related head pain with a tightening, non-pulsating quality—that generally respond to analgesics, sleep, neck exercises, and time. Migraines afflict about ten per cent of people with headaches, but a much larger percentage of those who see doctors, because migraines are difficult to control.
Read more at the New Yorker
During today’s annual Headache on the Hill event, patients, physicians and advocates from the Alliance for Headache Disorders Advocacy will once again brief members of Congress on the impact of headache – and how better funding, more research and improved access to treatments could mitigate the conditions’ impact on patients.
Headache disorders affect an estimated 90 percent of Americans, while migraine plagues 36 million Americans each year. Cluster headaches, characterized by their severe pain, are now as prevalent as multiple sclerosis.
More at Institute for Patient Access