“Other than people diagnosed with cluster headaches, I have never heard anyone admit honest disappointment with an MRI that ruled out a brain tumor.”
Headache on the Hill
The Alliance for Headache Disorders Advocacy was formed by the top neurologists, headache specialist and advocacy organizations to lobby in Washington DC for additional research funding for these disabling disorders. To make the people that make the decisions on funding accountable for the chasm between the appropriate amounts and actual.
Each year we gather together to meet with our senators, representatives and appropriate agencies for a day of advocacy, education and awareness in Washington D.C.
Our goals are to educate those that are responsible for addressing the needs of over 36 million people in the US with headache disorders. We point out the deficiencies in current treatments, the impact upon society in both the suffering and financial burden, and the disgraceful amount of research funding that is allocated each year to alleviate these shortfalls.
We attempt to meet with representatives from as many states as possible and pay particular attention to those members of congress that sit on committees that can positively affect our objectives.
We carefully construct a specific set of “asks” which we bring to these meetings which outline what we are hoping to improve. Whether it be increased funding, improved targeting of available funds or changes in policies that can produce positive effects upon millions of lives.
Many times we are able to team up physicians that can explain the medical aspects of our “asks” with patients that can explain the personal impact these conditions have upon not only the individual but the entire family.
Through these efforts we have already been able to achieve very real improvements within the system that have and will continue to translate to improvements in the lives of millions.
We are currently involved in battling the SSA and CMS (Centers for Medical Services) in an attempt to get Medicare and Medicaid to cover oxygen. We will get this done. It takes a lot of people to connect the chain of events that will make the change happen. Will you be the link that makes this happen?
We travel each year to DC to advocate for improving the lives of people living with headache disorders.
We team top headache specialists with patients to meet with our representatives.
We point out the need for policy changes and increased research funding.
We make clear the positive impact these changes can have upon not only their constituents but the positive financial impact these changes can have upon the economy by cutting health care costs and allowing people to lead more productive lives.
Some Issues facing cluster headache sufferers
Because the pain is so severe, sufferers have spent much of their time with condition, hiding it and themselves from family, friends and society.
Because of this we have an enormous job ahead in education, awareness and advocacy.
An example of a neglected condition is that even though clusters are nicknamed the suicide headache, the agency running the National Suicide hotline hadn’t even heard of them. Because of our work in DC, not only do they now know about us, the operators are now trained on how to handle calls from cluster headache sufferers. They won’t be met with, “yes I get migraines so I know how you feel.”
Cluster Headaches are easily diagnosed if done so by a knowledgeable physician.
Unfortunately, besides many other misdiagnosis and mistreatments, over 40% of people with clusters end up having dental work done such as root canals and tooth extraction prior to a proper diagnosis.
Reducing the diagnosis time will eliminate years of suffering and unnecessary surgeries and medical treatments.
Awareness and education directed toward:
- Government agencies that budget research dollars that need to be directed toward such a disabling condition.
- Governmental agencies that handle disability and health care.
- Doctors to decrease diagnosis times
- Sufferers themselves as to available treatment options
- Emergency rooms to offer better treatments. Often treated like migraines and care is completely different.
- Families to help them understand the seriousness of the condition
- Employers to help people be able to maintain gainful employment.
There is much to be done in Washington DC. Please join us next year on February 8 & 9, 2016 along with the AHDA (Alliance for Headache Disorders Advocacy) as we keep the pressure on those that have the power to help us.