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.
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Migraine patients deserve access to innovative therapies. Ready to get involved? Watch their story and join the fight for access now.
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Add migraine to the long list of battles faced by veterans of the United States Armed Services.
In a Tuesday policy panel sponsored by The Headache and Migraine Policy Forum, experts from across the health care and veterans support spectrum weighed in on how migraine and headache disorders impact veterans – and whether these women and men can access the treatment they need.
The conversation highlighted several issues:
“If you’ve seen one patient, you’ve seen one patient,” explained James R. Couch, Jr., MD, PhD, the acting medical director for the Comprehensive Inpatient Integrated Rehabilitation Program at Oklahoma City’s VA Medical Center. “Don’t try to mash them all together and say ‘this should work for everybody.’”
Iraq and Afghanistan’s Impact
“These soliders were changed while they were protecting us and our freedoms,” noted Alan Finkel, MD, who treats active-duty soliders at Fort Bragg. Calling affected veterans, “armies of one,” Dr. Finkel alluded to migraine comorbidities such as severe depression, PTSD, sleep disturbances and anxiety.
“I am amazed on a daily basis at the breadth of the services that are available and can be made availalbe to our veterans,” noted Donald S. Higgins, MD, the national program director for neurology at the Veterans Health Administration. Dr. Higgins noted that life-changing, cutting-edge therapies are available at the VA system, as are telehealth and teleneurology applications.
Panelists agreed on the need for more trained headache specialists. “We used to get no lectures on headache in medical school,” Dr. James Couch noted, adding, “Now we get two to three or more. Gradually, we’re improving. This should continue.”
Christopher Meek, co-founder and CEO of SoldierStrong Access, described the impact of stigma on veterans and active duty servicemembers. The “warrior effect” can keep veterans from acknowledging their disorder and seeking treatment. Having migraine or another headache disorder “makes them feel like a failure,” Meeks explained, “It takes them to a dark place.”
David Charles, MD, neurologist and chairman of the Alliance for Patient Access, moderated the panel.
The Headache & Migraine Policy Forum advances public policies that promote accelerated innovation and improved treatments for headache and migraine sufferers. Its policy forum coincided with more than 225 Capitol Hill meetings as part of the annual Headache on the Hill advocacy day, sponsored by the Alliance for Headache Disorders Advocacy.
Headache on the Hill brings health care 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. This marked the event’s 11th year.
Who feels the impact of headache disorders and migraine? More people than you may think, according to a new video from The Headache & Migraine Policy Forum.
Collectively, 39 million men, women and children in the United States and more than 1 billion people worldwide experience migraine, the third most prevalent illness in the world. As the video explains, migraine has emerged as a common problem for veterans, particularly those who have been deployed or have suffered a traumatic brain injury. While some headache disorders disproportionately affect women, others are genetic, afflicting a family one generation after another. Those who have experienced an injury or stroke are another affected group.
Read more at Institute for Patient Access.
What’s worse than battling a debilitating, painful and costly disease? Having to convince people that it’s real.
Yet that’s just what many of the 40 million Americans with migraine and headache disorders must do. In a panel discussion during the recent National Summit on Balanced Pain Management, advocates pinpointed several common myths– and described how stigma compounds the pain of headache disorders.
Read more at Institute for Patient Access.
Over the last few decades, improved body armor has helped protect America’s men and women in uniform from fatal complications such as those from close-proximity blasts. They’re surviving. They’re returning home to their spouses, partners, parents and children.
But many still have wounds – some visible, some invisible.
Read more at Institute for Patient Access.
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
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.