Headache on the Hill Lobbying Event

Headache on the Hill Lobbying Event

By Katie M. Golden

Katie Golden

No matter what side of the political aisle you prefer, many in the pain community are concerned about the future of healthcare. Since the surprise ending of the presidential election, I’ve decided to focus my anxiety into a cause that is near and dear to my heart, while being a part of the political process.

I have chronic migraine disease, meaning that I experience 15 or more migraine days a month. On Feb 13 & 14th, I will be attending Headache on the Hill for the third time to have my voice heard on the importance of funding and research for the 36 million Americans who have some form of migraine.

This event is celebrating its 10th year and is sponsored by the Alliance for Headache Disorders Advocacy (AHDA). This year over 115 patients and headache specialists will gather. The night before going to Capitol Hill, the group will be briefed at an advocacy training meeting on the items (called “asks”) that should be discussed in every meeting with a state representative or their health legislative assistant in Congress. These asks are important in trying to further the agenda of AHDA, which ultimately wants to see more funding allocated for migraine.

In previous years, the “asks” have been:

  • NIH Should Account for Disease Burden in Funding Decisions:
  • The Veterans Association Should Prepare for the Wave of Post-Traumatic Headache and Chronic Migraine Patients:
  • Renew and Support Funding for Research on Chronic Migraine and Post-Traumatic Headaches:

The first ask listed above relates to diseases and conditions that affect fewer citizens sometimes receive more funding than those that are affected more. Migraine is the 6th highest disabling illness in the world, yet only receives less than .10% of funding in America.

In 2016, the CARA Act (Comprehensive Addiction and Recovery Act) was signed into law. A provision was included in the CARA law that directs NIH to consider the relative burden of pain in prioritizing the overall NIH research portfolio. With this provision, the NIH will consider the burden of pain when directing funds, which should directly benefit migraine research.

Another win related to the Headache on the Hill ask was that the Senate Appropriations report language call for the (1) eligibility of headache disorders research proposals for Defense Dept funding, and (2) increase NIH attention to chronic pain research relative to its impact.

Of course, Headache on the Hill did not do accomplish this on their own, as the whole law-making process is quite complicated. However it shows that our voices are being heard, along with other advocacy groups and even individuals. It’s too late to join us this year, but we’ll let you know how it went and information about the 2018 event when available.

Katie Golden lives in Southern California. She is a member of the American Headache and Migraine Alliance (AHMA), the National Headache Foundation and the US Pain Foundation and community moderator for Migraine.com.

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Authored by: Katie Golden

There are 7 comments for this article
  1. Ben Aiken Longfellow at 2:06 pm

    Some chronic pain patients are in such a poor health condition that even if they had sufficient funds to go lobby, the enormous energy it would take while fighting their pain may make it very difficult to do. I write politicians nearly daily but, just one letter occasionally doesn’t mean much to politicians with huge agendas. One would think that with 100 million Americans in some degree of chronic pain would be significant to the politicians though! If one at a time writing on behalf of chronic pain folks won’t help rescind the CDC “guideline”, The CDC guideline is in print and states that it is JUST a recommendation for opioid medication prescribers, however, the penalty for doctors to not adhere to the “guideline” is WELL known by our doctors and they know it will cause their license recvocation. Therefore the physicians DO NOT have the authority to prescribe to their patients even the dosage that they were prescribing just a few months ago. I do not believe that our doctors are reducing dosage just to watch their patients suffer, go mentally downhill, lose they jobs if employed, and sit in their clinicians office all but crying because of the insufficient amount of opioid medication being prescribed. Just am idea. Petition?

  2. Katie Golden at 2:09 pm

    Sara,
    The US Pain Foundation is planning on doing a similar event to lobby on behalf of all pain patients later this year. I encourage you to get involved in this group!!
    -Katie

  3. sara patterson at 9:13 am

    ATTENTION:
    What we need to do is organized pain patients from 50 states to meet in Washington DC

    It may take a year for people to save money and have buses leave from populated areas

    This is what the American Disability ACt was passed overnight. I will try to find someone who may be able to help arrange this.

  4. Katie Golden at 5:46 pm

    Thank you all for your comments. Your points are all valid. However this non-profit who has lead the discussion in the past 10 years was founded for migraine funding and research.

    No one can truly understand each other’s pain. The purpose of Headache on the Hill is not to divide or separate those with chronic pain.

    If you want to get involved with an organization that covers all chronic pain issues, consider checking out the US Pain Foundation.

    The bottom line is to get involved in whatever level of government on topics that matters to you.

  5. Doug at 10:44 am

    This post share comes from a member in my Leadership Commission group and I truly believe that all this information can be used in a productive way.
    Also, the Chronic Pain Community can take a few pointers from the Women’s March and start protesting at their Representatives state offices. We can’t afford to keep using our diseases as excuses. By using these Supreme Court cases on our protest signs & demanding our Civil Rights, the chronic pain community can start bringing the Press into the conversation. Right Now is our opertune moment to take action because every single protest is getting media coverage. I PICK A SIDE,,, THE CHRONIC PAIN SUFFERERS SIDE!!!

    Good news!!! I have found several Supreme Court cases directly pertaining to our case of holding the VA, the CDC, the DEA and even members of Congress responsible for the cruel and inhumane treatment of veterans and private citizens for the policies they put forth or supported depriving individuals their Constitutional Rights under the Fourth and Fifth Amendments. In fact in Wheeldin v. Wheeler, 373 U. S. 647 (1963) the judges state clearly that if petitioner “can demonstrate an injury consequent upon the violation by federal agents of his Fourth Amendment rights, is entitled to redress his injury.” The Supreme Court additionally states “[t]he very essence of civil liberty certainly consists in the right of every individual to claim the protection of the laws, whenever he receives an injury.”

    PLEASE seek out the families of the sixteen veterans who committed suicide on VA properties since 2015 and share this information (or any other family who has suffered such a loss due to being denied quality healthcare). In fact if you know of other veterans or civilians currently being denied quality healthcare advise them to get attorneys and investigate these cases in more depth. This is even better than going to the Unites Nations as individual families, veterans and civilians could actually be compensated for the insufferable torture that has become our lives. Our suffering is about to be their suffering as we hit them where it hurts – their pockets! Robert D. Rose Jr., BSW, MEd., USMC — “Teufelshunde”

    Supreme Court case Bivens v. Six Unknown Named Agents, 403 U.S. 388 (1971)

    Wheeldin v. Wheeler, 373 U. S. 647 (1963)

    Cf. J. I. Case Co. v. Borak, 377 U. S. 426, 377 U. S. 433 (1964)

    Jacobs v. United States, 290 U. S. 13, 290 U. S. 16 (1933).

  6. Gotto Change at 8:26 am

    I can understand that out of control pain regardless of cause is unbearable. Headache being the 6th highest disabling illness in the world is significant however, ANY chronic pain that can be treated, and the medication IS available but, not prescribed sufficiently, is nothing but discrimination. Discrimination against those who are and have been treated albeit with opioid medication, sufficiently, and successfully, for years or decades to achieve what is necessary to provide……life. Life that may be basic such as feeding ourselves, bathing, or being self sufficient in our homes. In millions of chronic pain patients, sufficient medication providing the ability to stay employed which may be a necessity for very survival. Millions of us can not lobby personally as the chronic pain grip is so bad that it may have us confined to our homes. Lobbying CAN be done by writing our state politicians, writing our state medical board, writing our state governors, writing Congress as a governing entity, writing the President even with the pleasant “surprise” ending election. Tell your/our narrative of the effect the CDC “guideline” is having and the unnecessary added hardship it is causing.

  7. Danny at 6:18 am

    While you focus your “anxiety, I’ll focus my” excitement “. Either way, getting Washington to recognize head pain is very important. By the way, soldiers aren’t the only ones who suffer from traumatic brain injury and PTSD. I’ve been diagnosed with both from an electrical accident almost 26 years ago. And the brain damage has caused daily pain of #7 or higher, which is at least equal to, if not worse than, the worst Migraine conditions.