Migraine World Summit 2020 Replay

The Migraine World Summit is a virtual event that broadcasts interviews from over 30 leading experts, including doctors and specialists, to share about treatments, research, and strategies to help you manage and improve your headache disorder. 

The 2020 event took place in March. Due to the significant challenges we’re facing in the midst of the Covid-19 pandemic, the event is being offered again from June 10-19. 

The event is FREE: the interviews will be open according to the event schedule (4 per day, plus 1 webinar), changing each day at 6pm ET. You can access the interviews directly on the website free for 24 hours. If you’d like to have lifetime access to the interviews, you can purchase the Summit All-Access Pass (affiliate link).

Register for free: Migraine World Summit 2020 Replay

Tune in June 9 at 5pm ET for a Live Pre-Summit Q&A with Hosts, Carl Cincinnato and Paula Dumas. They’ll explain why the Summit is being replayed, what’s new about the June Replay, and answer other questions. It’s free to join, but you must register beforehand. Click the link to register (no sign up required) for the Live Pre-Summit Q&A.

Headache on the Hill 2019: The Asks

In my previous post, Headache on the Hill 2019: My Experience, I shared about my personal experience at the annual advocacy event. Below is what I wrote at the end of my time in DC. The majority of this post, however, will speak to our 'asks' for 2019.

"The last few days have been an amazing, exhausting, powerful experience. I joined a wonderful group of patients, advocates, headache specialists, and other supporters in Washington, DC for the 12th annual Headache on the Hill. We met with lawmakers to raise awareness, request increased research funding commensurate to the burden of headache disorders, and demand equal protection and just coverage under Social Security Disability Insurance. I was honored to participate - it was especially rewarding to be working alongside my headache specialist. I will continue advocating for all those affected by headache disorders, and look forward to future visits to the Hill."

This year, we asked our members of Congress to support increased research funding for headache disorders from the National Institutes of Health (NIH), and to support requests directing the Social Security Administration (SSA) to revise disease listings for determination of disability benefits for those disabled by migraine and other headache disorders.

Our 'ask' for the National Institutes of Health (NIH) was to prioritize research funding commensurate to the burden of headache disorders. Congress has already appropriated funds for the HEAL (Helping to End Addiction Long-term) Initiative to address the need for non-opioid therapies for chronic pain. Some of those funds have been set aside for research in specific areas (back pain and hemodialysis pain). Our request was that some of the appropriated funds be allocated specifically for headache disorders, in proportion to the disease burden.

• Migraine is the 2nd leading cause of all global disability (1).
• Headache disorders are the least funded NIH research area among the most burdensome US diseases (2).
• Migraine research comprises just 0.6% of all NINDS extramural funding (3).

Our 'ask' for the Security Administration (SSA) was to seek equal protection and just coverage under Social Security Disability Insurance (SSDI). When a person applies for SSDI benefits, they are faced with an unfairly arduous process. When that person is filing a claim for benefits due to a headache disorder, they are often initially denied. What I didn't know until Headache on the Hill is why...

The SSA uses a "Blue Book" listing of impairments, when making decisions for disability benefits. If one's impairments meet or exceed the listing, benefits are granted. However, there are NO listings for any headache disorder!

When a person applies for disability due to a headache disorder, the claim is compared to impairment listings for epilepsy. There is no guidance on how to apply an epilepsy listing to headache disorder impairments, and the two aren't sufficiently comparable.

This is unacceptable, given the prevalence and impact of headache disorders:

• 1 in 7 Americans will experience a migraine attack this year (4).
• Active migraine attacks disable with impacts comparable to severe dementia or amputation of both legs (5).
• Only 37% of Americans with chronic migraine are employed full time (6).
• Socioeconomic status decreases as migraine prevalence increases (7).

Our 'ask' was to reform the Social Security Administration (SSA) Blue Book for fair adjudication of headache disorder claims. We requested that the SSA offer clarification for how SSDI claimants with headache disorders should apply current Blue Book listings, ensure that all listings are updated at least every five years (it was last updated in 2016, but before that was 1985), and add a listing for headache disorders at the earliest opportunity.

UPDATE: On August 26th, the SSA released a new Ruling or SSR with guidance specific for "Evaluating Cases Involving Primary Headache Disorders."

More information about Headache on the Hill 2019:

• Alliance for Headache Advocacy HOH 2019
• American Migraine Foundation HOH 2019

Sources:
(1) GBD 2016. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990-2016: a systemic analysis for the Global Burden of Disease Study 2016. Lancet 2019;390:1211-59, https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)32154-2/fulltext
(2) https://report.nih.gov/info_disease_burden.aspx 
(3) https://report.nih.gov/categorical_spending.aspx
(4) Global Burden of Disease study, 2016, https://www.ncbi.nlm.nih.gov/pubmed/28919117.
(5) Salomon JA, et al. Disability weights for the Global Burden of Disease 2013 study. Lancet Glob Health 2015;3:e712-23, https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(15)00069-8/fulltext.
(6) Stewart WF, et al. Employment and work impact of chronic migraine and episodic migraine. JOEM. 2010;52:8-14, https://www.ncbi.nlm.nih.gov/pubmed/20042889. 
(7) Stewart WF, et al. Migraine prevalence, socioeconomic status, and social causation. Neurology. 2013;81:948-55, https://www.ncbi.nlm.nih.gov/pubmed/23990405.

Sharing Resource: Migraine Links

I've found many fantastic resources that can be helpful for anyone, regardless of where in their journey with Migraine they are. If you're newly diagnosed, these can help you better understand your new diagnosis. If you've been living with Migraine for years, these might offer different information than you've previously come across. And, sometimes, it's just nice to have a refresher course.

Here's my MIGRAINE LINKS.

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Migraine Awareness Month Blogging Challenge #23: Mild Head Trauma

I just read an article that was very interesting and applicable to me - Headaches Worse With Mild Head Trauma Than More Severe Trauma: Researchers say even seemingly mild head injury should be taken seriously.

The study found that "those with mild injury were more likely to report new or worse headaches than those with moderate to severe injury."

The study is to be presented this week at an American Headache Society meeting - the data and conclusions of this study should be viewed as preliminary until they're published in a peer-reviewed journal.

This really struck a chord with me because my auto accident didn't result in a "severe" head injury. And, yet, here we are approaching 4 years since my accident, and I'm still trying to get my chronic, debilitating Migraines under some kind of control.

Please take all brain trauma very seriously, regardless of whether it seems mild, moderate, or severe.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #18: The Price is Right

In 2011, the National Institute of Health (NIH) only designated 0.07% of NIH funding to headache disorders! The great reach of Migraine disease and other headache disorders (there are over 100!) isn't being acknowledged and dealt with. Headache and Migraine are an enormous drain on society - costing us more money than epilepsy, asthma, and ovarian cancer combined. Yet, funding doesn't accurately reflect this.

If money were no issue, there are a lot of things I would do for the Migraine community - I'd make sure that everyone was able to get the medical treatment they deserve, I'd ensure that doctors receive more Migraine and headache centered training in school, and I'd increase awareness of Migraine and headache disorders.

But, if I had to choose ONE thing, it would probably be to expand research opportunities to learn more about Migraine and other headache disorders. Research into the epidemiology, pathophysiology, and treatment of Migraine is greatly needed to help dispel all of the myths, misconceptions, and stigma that surround Migraine. We know so little about what's happening in the brain during a Migraine attack, which leaves diagnosis and treatment greatly lacking.

And, since money is not issue, I'd help increase funds for Teri Robert's idea to create an endowment fund, which would permanently fund research for Migraine.

Image by Kate Chapell

I believe that funding research will give Migraineurs some much-needed HOPE. And, that is what will help us keep taking the next step, and the next step...

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #16: Migraine Genes (Migraine Without Aura)

The other day, I wrote about new research regarding a possible genetic link explaining the prevalence of Migraine in Women - Migraine Genes (Prevalence in Women).

More new research offers us valuable information about the genetic underpinnings of Migraine attacks, specifically Migraine without aura (which is the most common variety of Migraine).

Please take a few minutes to take a look at these two articles that discuss this important new research - Migraine Genes: X Marks the Spot - and - New hope for migraine sufferers. The researchers identified four genes (and additional genetic variations - blood vessels and blood flow as key parts of Migraine attacks) related to Migraine disease, thus reinforcing the notion that there is a strong genetic component of Migraine.


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #15: Migraine Genes (Prevalence in Women)

New research has identified a specific region on the X chromosome as playing a role in Migraine. Please take a few minutes to take a look at these two articles that discuss this important new research - Migraine Genes: X Marks the Spot - and - New hope for migraine sufferers.

Here is an excerpt from the first article that helps outline the significance of this type of research:

"Finding these genetic links to Migraine is especially important because we don’t entirely understand the pathophysiology of Migraine and there have been precious few studies to help us figure it out. Learning more about how and why Migraine attacks occur will help researchers find or design specially targeted treatments for those of us who suffer Migraine. It may also be the smoking gun we need to finally turn Migraine disease into something we can diagnose by testing for something instead of simply excluding everything else we can think of to reach a diagnosis. This is called a diagnosis of exclusion and is currently the only way physicians have to determine if a patient truly suffers from Migraine disease" (Migraine Genes: X Marks the Spot).

If you remember from high school biology, all females have two X chromosomes, while males have an X and a Y chromosome. "'These results provide more support for the role of the X chromosome in migraine and may explain why so many more females suffer from the disorder,' said Professor Griffiths" (New hope for migraine sufferers).

This research is a very important step in moving forward in Migraine diagnosis and treatment - "the research provides compelling evidence for a new migraine susceptibility gene involved in migraine. The study also indicated that there may be more than one X chromosomal gene involved and implicated a gene involved in iron regulation in the brain" (New hope for migraine sufferers).


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).