A Headache On Stolen Land is the topic of this blog article. This year marked number 15 of Alliance for Headache Disorder Advocacy’s Headache on The Hill, 200+ advocates from 48 states visited close to 300 Congressional offices.
As a person living with never-ending intractable/ chronic / daily traumatic brain injury related pain for over two decades, it has been an honor to lobby at this event for multiple years– during that time, we’ve continued to see progresses such as; increased funding for research, expansive options for symptom management, obtained access to oxygen therapy, ignited the HEAL initiative and implemented VA Headache Centers of Excellence which are all meaningful strides in the world that is Healthcare reform– however- I have never been more proud to be a part of this occasion prior to now.
The 2022 Asks present an opportunity for our legislators to prioritize their Revolutionary work by:
- ASK 1 – Supporting investment into Indian Health Service Headache Disorders Centers of Excellence– with $5 million per year in Appropriations (not INSTEAD of other funds but in ADDITION to) the goal would be that Human Services Secretary designates 6 sites across the U.S.A, specifically to rural/reservation areas- with the ultimate belief it’ll lead to more health / well-being– providing these establishments with an emphasis on non-white staffing would demonstrate cultural competency, as well as help to ensure proper accessibility to including but not limited to options for TELEHEALTH, so that wherever one may be located they are able to connect with and consult with a medical professional.
- ASK 2 – Providing transparency via the General Accountability Office (GAO) report on NIH funding as it relates to the burden of disease, specifically for headache disorders. We are aware that Migraine impacts roughly 40 million Americans but despite Migraine being the 2nd leading cause of all global disability and it being the main cause of disability for women under 50, it still receives some of the least amount of funding by the National Institutions of Health, even though NIH has expressed a strategic plan to consider the “burden of individual diseases”. .
In order to alleviate the pressing need for more headache-specific related providers, if we are to learn breakthrough options for symptom management, to ever understand origin/invest in viable solutions– there is a severe need for increased funding for research. Thus we are in need of Headache/Migraine disorders being prioritized- not above or before any other cause but also and alongside.
GOVERNMENT ACCOUNTABILITY is a part of PUBLIC SERVICE, the questions are: in what ways are we moving forward, where’s the proof, how is money being spent?
Navigating the healthcare system at any rate, for any reason- can prove challenging. I cannot begin to keep track of the amount of countless hours I’ve devoted to sitting in waiting rooms at clinics, fighting for insurance coverage, begging for referrals to receive care, convincing providers that my ailments are REAL, not to mention attempting MANY treatment options in desperation for relief .
But as horrendous as my experiences have been at times, nothing compares to the malpractice and neglect that is experienced by patients who are of other than European descent.
It has been documented that American Indian / Alaskan Native have THE HIGHEST burden/prevalence of Migraine/Headache… 40% higher than other races. . With a particularly high impact on men- we are in need of more research but the suggestion is the rate of [untreated] concussion is higher thereby resulting in more unaddressed pain.
This is why health that is caring, regardless of specific cause, condition- serves as an INVESTMENT into The People. We have huge disparities regarding equitable care. Indigenous & marginalized people of color are underserved- this is reflected in statistics like: Having only 1 neurologist per 125,000 people!
Why is it that the communities with the biggest needs–Â have the fewest resources?
It is my belief that in our Country, there is no more of a pressing issue than the need for Freedom/Liberation for all, most especially those who’ve experienced oppression for much of if not the entirety of their existence. . . Diversity; inclusivity, humility + the use of our privilege to make the world a better place is our responsibility– thereby these conscious efforts should be happening IN CONJUNCTION TO any / all other work, these are proposed steps forward in effort to propel our Nation into an active state of healing and recovery, an opportunity to create, rewrite and make history.
Author:Â M. Mays
Creator:Â Â https://peace-love.life/
Founder:Â Â https://keepinourheadsup.com/
Practitioner: https://www.bewellcommunitycollective.com/member-directory Â
Publisher: International Pain Foundation, iPain Blog
