Thirty-six million Americans have migraine disease. One hundred million Americans have chronic pain[i]. Research for both diseases are severely underfunded through the National Institutes of Health (NIH). However, the effects of these diseases significantly impact the U.S. economy. Migraine costs the U.S. economy $31B[ii] a year in lost productivity, while chronic pain costs upwards of $600B[iii].
The economic burden
Chronic pain disease places a huge burden on society, yet is overlooked during budget planning. In 2015, the NIH funded $463[iv] million for pain research, which equates to $4.63 per person who suffers from chronic pain. At first glance, close to a half a billion dollars might sound like a lot, but remember that relative to the societal costs of the individual diseases, they funded 5 times more than that for research on heart disease, 6.5 time more than that for research on diabetes and 26 times more than that for research on cancer[v]. This is not enough when taking into account not only the economic burden, but also the opioid epidemic, in which 91 people a day die from opioid or heroin overdose[vi].
The societal burden of pain is not being addressed through allocation of NIH funding. If new therapies reduced US pain costs by just 1%, it could save the U.S. $6B annually[vii]. More importantly finding alternatives to opioids would help reduce the potential for lost lives and stimulate the economy with new jobs, higher productivity and new products. To me, this boils down to an improved quality of life.
These statistics were the backbone of the message given to the offices of members of Congress at the 10th Annual Headache on the Hill on February 14, 2017. In years past, headache disorders were the main focus of our message to Congress. By discussing the larger population of chronic pain sufferers, it allows a broader population to potentially benefit, which includes those with headache disorders.
This year’s specific task
Last year the Comprehensive Addiction and Recovery Act (CARA) was passed to focus on addressing the opioid epidemic. Through the past efforts of Headache on the Hill, CARA included language that directed research funds to be allocated based on the burden a disease places on the US economy (thank you Dr. Shapiro!). Our specific ask this year was to fund this provision of the CARA law.
Congressman Peter Welch (D-VT) and Senator Brian Schatz (D-HI) agreed to lead the working group for this proposed appropriations bill to fund research for chronic pain. During Headache on the Hill, every group made their representatives aware of this proposed bill and asked them to join the working group to move it forward. This is referred to as our “ask” of our representatives, an actionable item to support our cause.
Training to be an advocate
Is your head spinning from trying to digest the stats, understanding the purpose of the CARA law and figuring out how to ask those in power to support our cause? You’re not alone. That’s why all participants in Headache on the Hill attend a training session that gives an overview of the current political climate, an explanation of how bills are passed, a breakdown of this year’s “asks”, and an opportunity to strategize with members from your state before hitting the Hill.
According to the American Academy of Neurology (AAN), the most effective way to contact your representatives is either in person, by phone or through mail. The thought of speaking to lawmakers can be intimidating, until you realize that you will be the expert in the room. Your story about how daily life is dramatically affected will compel congressional staffers to make time for our issue. Presenter Mike Amery of AAN told us to “transfer your pain onto the staff so they understand.”
Walking the halls
This year our group represented 33 states and had a collective 158 meetings with staff members in both the Senate and the House. My group covered delegates from Virginia and DC. Two of us were HOH veterans, happy to let the others jump in when comfortable to share their stories. Of the six of us, two have chronic migraine, one has cluster headache, one is a headache specialist and two are caregivers (including my best friend who has only experienced one migraine in her life and just wanted to come and support me!)
We got into a groove of changing up who lead each meeting and jumping in to further explain certain topics. In some offices, the health legislative assistants were the same from the previous two years, making it easier to cement a long-term relationship with those offices. Some meetings were really short while others lasted as long as 20 minutes, with lots of questions about our condition. The initial response was positive. Follow-up efforts have shown that many offices had reviewed the material and planned to get involved in the cause!
The most gratifying moment for our group was a potential diagnosis given to a staff member. I was not present for this meeting, having run over to Senate Minority Leader Chuck Schumer’s office, where I have ties. When I rejoined my group, they recounted how the staffer they met with listened intently to the patient stories and was very interested in getting involved in the working group efforts to fund the CARA provision. Then he began telling his own story of how he had suffered from what he thought were sinus headaches, but they were accompanied by a list of migraine symptoms. Lucky to have a headache specialist in our group, they pointed out that it sounded like he had migraine and not allergies. The staffer got her contact information and was going to make an appointment to explore the possibility of having migraine disease! That’s an instant success story!
How can I participate?
I can’t stress how important it is for us to use our voice to let our representatives know what issues are important to their constituents. We are our own best advocates, no one else is going to do it for us. The best part about the “ask” from Headache on the Hill is that it’s a bi-partisan issue. There’s no reason for Democrats or Republicans to feel confined by party lines. Our issue doesn’t discriminate based on political affiliation, geographic region, race, gender or age.
To find the information we left with each office that includes statistics, CARA law provisions and our “ask” of each representative, you can view the documents here:
If you want the opportunity to help us with upcoming action alerts or join us in DC next year, follow the AHDA on Facebook at http://www.facebook.com/AHDAorg check their website for updates: http://allianceforheadacheadvocacy.org/. And thanks to Katie MacDonald for helping craft this post!
[i] Todd J. Schwedt, MD, MSCI; Robert E. Shapiro, MD, PhD. Funding of Research on Headache Disorders by the National Institutes of Health. 2009. Headache. doi: 10.1111/j.1526-4610.2008.01323.x
[ii] Todd J. Schwedt, MD, MSCI; Robert E. Shapiro, MD, PhD. Funding of Research on Headache Disorders by the National Institutes of Health. 2009. Headache. doi: 10.1111/j.1526-4610.2008.01323.x
[iii] Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Institute of Medicine (US) Committee on Advancing Pain Research, Care, and Education. Washington (DC): National Academies Press (US); 2011. http://www.ncbi.nlm.nih.gov/books/NBK91497/
[iv] NIH. Estimates of Funding for Various Research, Condition, and Disease Categories. February 10, 2016. https://report.nih.gov/categorical_spending.aspx
Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Institute of Medicine (US) Committee on Advancing Pain Research, Care, and Education. Washington (DC): National Academies Press (US); 2011. http://www.ncbi.nlm.nih.gov/books/NBK91497/
[vi] Rudd RA, Seth P, David F, Scholl L. Increases in Drug and Opioid-Involved Overdose Deaths — United States, 2010–2015. MMWR Morb Mortal Wkly Rep 2016;65:1445–1452. http://dx.doi.org/10.15585/mmwr.mm655051e1