Over the past few years, the Society has been working with the Social Security Administration to discuss the possibility of adding severe forms of multiple sclerosis to this list. Because of the varying symptoms and progression of the disease, the Social Security Administration was particularly interested in finding a quantitative way to characterize how a person with MS could qualify for this expedited approval process. As part of this process, the Society suggested a medical expert and a person living with MS to testify at the Compassionate Allowance Autoimmune Disease Hearing.
Dr. John Booss, a retired neurologist and long-time activist, spoke to the panel about the scientific and clinical background of MS. Additionally, Dr. Booss offered a potential model to determine whether a person with MS should qualify for a compassionate allowance determination. Yvonne Brown, an activist from Maryland, spoke about her personal struggle applying for Social Security Disability Insurance, notably the years she waited to be approved. She pointed out that if the Compassionate Allowances program was expanded, less people would have to endure the extremely long wait-period to receive benefits. To see video of the testimony or download the presentations, click here.
The Social Security Administration is now in the process of consulting with other internal experts about the appropriate diseases to add to the Compassionate Allowances List. When a new version is released, the National MS Society will communicate the information to our activists.
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| Dr. John Booss testifies at a Social Security Administration hearing |
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| Yvonne Brown, MS activist, testifies at a Social Security Administration hearing |
3 comments:
I was diagnosed 3 years ago with Ms. I think it is wonderful what the society does for all of us with this disease. Being a dad and husband I try to do as much as can to raise awareness of Ms. I work hard everyday and I plan on doing so until I can't no longer my family needs that. Remember no one can take this disease back so don't ever stop living. My family and I have done the Ms walk here in Ma, every year since I was diagnosed, and I plan on doing it for the rest of my life. THANK YOU
I think that is wonderful, as a person that it seemed like it took forever to obtain SSI and social security and having MS I hope they do pass this. I am now in a wheelchair and on oxygen so I qualify. Should are disease really have to go that far?
I believe that research should go into the CCSVI procedure since it really does work. I'm living proof of this. Without proper blood flow going to the brain, how good could that be? Once your jugulars are clear, almost all symptoms are gone, especially fatigue, which many if not most of us with MS endure.
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