How to Become a Patient Advocate

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

The Value of Research and Prevention in Addressing the Societal Burden of Migraine

Jaime Sanders has suffered from migraines since she was eight-years-old. Despite her chronic pain, she has “always managed to find the strength and will to move forward in life.” Sanders, a patient advocate and blogger, was joined by experts in different areas of migraine research and treatment to discuss the societal burden of this debilitating disease during a Research!America Capitol Hill briefing on June 15, 2017.

Walter Koroshetz, M.D., director of the National Institute of Neurological Disorders and Stroke (NINDS), emphasized how the BRAIN initiative and current research have made significant progress in identifying causes of migraines. The research has led to a treatment currently under review at the Food and Drug Administration, he said. However, more research is needed not only to understand the molecular causes, but to learn and address disparities associated with this condition. “African American women have 27% more frequent headaches than Caucasian women,” he noted.

Amaal Starling, M.D., an associate professor and physician at the Mayo Clinic, noted the lack of funding for migraine research and physicians to treat patients. While 40 million Americans suffer from migraines, there are only 520 headache specialists in the U.S., she said.

“We need to get that word out and encourage new physicians to go into headache medicine," added Mary Franklin, executive director of the National Headache Foundation who moderated the panel.

Dr. Starling said lack of funding leads to gaps in care. “Migraine is not just a headache. Migraine is a neurologic disease that deserves funding based on disease burden,” Starling said. More funding, she added, will give scientists and physicians the opportunity to research new treatment options.

As an adult, Sanders said she still suffers from the stigma associated with migraine which affects women disproportionately as well as veterans and children. "Migraine is as diverse a disorder as the people who occupy this planet. Not one migraine patient looks the same as the other," she stressed.

Brian Gifford, Ph.D., a researcher at the Integrated Benefits Institute, discussed the burden of migraine in the workplace. He estimates there is a $20 billion loss to employers on health care spending and productivity due to migraine.

The condition is not adequately addressed in the workplace, he said, further complicating efforts for migraine sufferers to effectively treat and manage their illness.

For photos of the event, click here(link is external).

Caitlin Grzeskowiak is a Research!America Communications Intern.

Learn more here.

Migraines Found to Be More Common in Concussed College Athletes The Reason for the Association Is Unclear

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.

Research on Preventive Drugs Raises Hopes in the Migraine Community

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.

Symptoms Of Migraine Headaches And Feeling Anxious: Risk For Anxiety Disorder Doubles In Lonely Men With Chronic Pain

It's likely we know someone who suffers from the debilitating pain of migraines. Symptoms of the headaches, such as sensitivity to sound, light, or touch, tingling or numbness, or vision changes, can make going to work, spending time with family, or even eating nearly impossible. Now, researchers at the University of Toronto, Canada, found migraine attacks double the risk of developing generalized anxiety disorders in men.

Read more at Medical Daily.

Light and Headache Disorders: Understanding Light Triggers and Photophobia

“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. 

The American Migraine Foundation Launches Initiative to Mobilize the 36 Million Americans Living with Migraine, A Disabling Neurological Disease

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.[1]

Read More at American Migraine Foundation. 

Why Impact & Cost of Chronic Migraine Comorbidities Justify “Whole-Person” Care

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.

Read the full paper here or review key findings in the Headache & Migraine Policy Forum’s new infographic.

Prevalence, Health Care Spending and Comorbidities Associated with Chronic Migraine Patients

The paper extends the current body of research in several directions:

• First, we provide more recent prevalence estimates of chronic migraine.

• Second, we examine the medical treatment costs by source of care and the prevalence of the use of different sources of care.

• Third, we examine the prevalence of comorbid conditions and their financial treatment and workplace productivity implications.

• Finally, we examine the impact that chronic migraine has on the treatment costs of patients with both chronic migraine and other comorbid conditions.

Read the full paper here. 

The Heroism of Incremental Care

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


White Paper Defines Balanced Pain Management as Better Way on Pain, Opioids

Balanced pain management offers an opportunity to better manage pain, control rising costs and reduce the potential for opioid abuse, explains a new white paper from the Alliance for Balanced Pain Management.   But realizing the benefits of a balanced approach requires policymakers and insurers to first expand access to more personalized, comprehensive treatments.

More at Institute for Patient Access

Congress Urged to Prioritize Headache Research, Treatments

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