Jump to content
ClusterBusters
Sign in to follow this  
Psiloscribe

Call to Action

Recommended Posts

Dear friends of Clusterbusters,

People with all severe and disabling headache disorders urgently need your help. 

If you think that this topic may not affect you or someone you care about, consider that the SSA has not changed their guidelines in almost 30 years. If not you, someone you know will certainly appreciate a level playing field some time in the next 30 years.

Cluster Headaches, also known as “suicide headaches” and Migraine, which  is the 7th leading cause of all disability are just two of these disorders. Yet, the US Social Security Administration does not list headache disorders as disabilities in their Blue Book – the official list of criteria for how to qualify for Social Security benefits.

Consequently, people disabled by headache disorders struggle unfairly to prove their legitimate disabilities. This situation is baffling, baseless, and grossly unjust.

The Social Security Administration has recently been revising the neurological disorders Blue Book listings for the first time since 1985. Accordingly, Clusterbusters, the Alliance for Headache Disorders Advocacy (AHDA) and certain members of Congress proposed that they finally add a headache disorders listing.  Unfortunately and without explanation, they have just refused to do, perpetuating a huge mistake.

But there is still a brief window of time until April 28, 2014 for you to tell the Social Security Administration to change course.

Write Social Security today supporting inclusion of a headache disorders listing, including Cluster Headaches, for fair determination of Social Security benefits for Americans truly disabled by headache disorders.

Please submit your comment to them here:  http://1.usa.gov/1gQS89a.

Once you submit your comment, you will be issued a confirmation tracking number, though it may take up to a week for your comment to appear on-line. Please donÂ’t submit the same comment multiple times.

Also, please forward this message immediately to everyone you know that cares about someone disabled by migraine, cluster headache, concussion headache, or other headache disorders.

How this non-listing affects people with cluster headaches:

Included in the listing of impairments as proposed by the Alliance for Headache Disorders Advocacy (AHDA), are trigeminal autonomic cephalalgias (TACs).

One of these TACs, known as cluster headaches, can be extremely disabling.

Commonly called suicide headaches as the suicide rate is in excess of 20 times the national average, these attacks are among the most painful conditions known.

Unrelenting pain of this magnitude leaves many people disabled for extended periods of time. Although there are no FDA approved medications specific to cluster headaches to prevent the attacks, often the medications prescribed attempting to mediate this pain, leave the patient unable to perform their current job responsibilities.

Leaving this condition unlisted is grossly unfair and leaves one of the most undeniably disabling conditions invisible. This invisibility not only hurts the patients and their families, but stifles research and continues to negatively impact all insurance coverage.

Listing this condition does not guarantee approval or benefits and most patients are able to function well enough to work at gainful employment and will not file for benefits.

What listing does do for every sufferer is to legitimize their pain and the struggle that they and their families endure. In essence, the SSA is saying that this condition should remain invisible.

The fact that the government agency assigned the duty of classifying the levels of disability that medical conditions can inflict upon itÂ’s citizens, judges a condition that causes people to kill themselves at alarming rates, deserves no listing.

As headache disorders are many and each one varies in severity and the disability that is inflicted, they should be listed in the registry as directed by the AHDA and those people that meet the suggested inclusion criteria, should be considered for benefits.

The exclusion of cluster headaches and other headache disorders has a serious negative impact upon hundreds of thousands of sufferers and their families. Exclusion stymies education of the medical community as it dismisses the seriousness of these disorders. This negatively impacts the career paths of professionals into this field.

Few doctors specialize in headache treatment, little research is conducted, and safe effective treatments vary from minimal benefit with severe side effects to no benefit at all. A portion of the blame for this untenable situation is the lack of a spot in this registry.

Consider the research institution that wants to open the registry to see where they can begin research to relieve the most pain, the most disabling conditions, to make a positive impact upon people that are suffering. They can open the book up and never find a mention of a condition that is considered the most painful condition known to man.

We have no medications. We see no research for help in the future. We are non existent to SSA. All the while this painful chronic condition is causing our members to take their own lives.

Please let those that remain and suffer know that the SSA acknowledges their existence by including them in the Federal Registry.

The Social Security Administration has been entrusted by citizens of the U.S. and Americans with Disabilities Act to address and codify disabling conditions. In addition to the above action, Clusterbusters asks U.S. citizens to "sign on"  to our letter written specifically to Acting SSA Commissioner, Carolyn Colvin.

On February 11th, 2014 Ms. Colvin's office hand delivered a Response Letter, to Clusterbuster advocate John Bebee. We feel strongly that this letter essentially perpetuates invisibility of chronic migraine and cluster headache by stating "We generally evaluate chronic migraine and cluster headache in adults under the most analogous listing-non-convulsive epilepsy-...". 

We believe the agency has a duty to understand the only "analogous" feature between cluster headache and epilepsy is they are disabling. 

Please visit our sign-on petition on Change.org at:: http://www.change.org/petitions/acting-commissioner-carolyn-w-colvin-segregate-and-list-independently-in-the-blue-book-of-disabilities-chronic-migraine-cluster-headache-currently-hidden-under-epilepsy?utm_source=share_petition&utm_medium=facebook&utm_campaign=share_facebook_mobile&recruiter=61022944

Thank you,

Robert A. Wold

President, Clusterbusters, Inc.

Share this post


Link to post
Share on other sites

I think I was #100. . :)  (What's special about 100 signatures, I thought there needed to be something like 100,000 to get the gov to give a response?)

J

Share this post


Link to post
Share on other sites

done.  sending to all I know as well.  email can move the numbers fast. 

We could use some help from some colleges and more massive organizations that are on the internet and love a good cause.  Got to be a way to make this viral! 

Share this post


Link to post
Share on other sites

LOL....

ThatHurts...You are so right!  I just forgot to add a specific number.  Fixed that :)  It's so great to see all the comments on both the Change.org "sign on" letter and the SSA public comments site.

I'm reading through the SSA site now...I see AgentOrange (former member here) and CHFather too.  YES!   And a bunch of the AHDA (The Alliance) Docs too.  Good stuff.  We're up to 640 comments on the SSA page and 950 signers on the Change.org letter!!!

Share this post


Link to post
Share on other sites
AgentOrange (former member here)
Cindy, AO is still here, I'm happy to say -- he just has a different screen name now.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×