Monday, December 19, 2011

Another Step Forward for the MS Community – Addition of Advanced MS to Compassionate Allowances Listing Will Help Speed Disability Applications

Good News! Due to the hard work of MS Activists over a series of months, the Society recently learned that it has been successful in working alongside the Social Security Administration (SSA) to add aggressive and advanced forms of MS to the “Compassionate Allowance” listing. Society staff and volunteers have been in conversations with SSA to better understand the Compassionate Allowance process and blog readers may remember that two MS activists—Dr. John Booss and Yvonne Brown--testified at a March 2011 Social Security hearing requesting that MS be added.

So what does this victory mean for people living with MS? The Compassionate Allowances Program expedites the review of Social Security Disability Insurance (SSDI) applications for diseases and other medical conditions that invariably qualifyfor disability insurance based on minimal objective medical information. The benefit of this is two-fold: it gets the sickest and most severely impacted applicants approved for Social Security Disability more quickly and it alleviates the backlog of applications for others in line.

This is a real victory for the MS community!!! This victory is a great example of non-legislative advocacy and, how using our collective voices can lead to real change. We just want to say THANK YOU again for your dedication and commitment to a world free of MS.

Stay tuned for more to come.


calistair said...

I feel that the title is a little misleading stating "Advanced MS".

The SSA website lists the condition as #59 "Malignant Multiple Sclerosis".

The term malignant multiple sclerosis is often used to describe MS patients who reach significant level of disability in less than 5 years from their first symptoms.
The National MS Society Advisory Committee on Clinical Trials of New Agents consensus defined it as: disease with a rapid progressive course, leading to significant disability in multiple neurologic systems or death in a relatively short time after disease onset. Reaching Expanded Disability Status Scale of 6.0 or higher, which is equivalent of needing unilateral support to ambulate (or worse) is generally considered this significant disability level.

Just my opinion...

MS Activist said...


You are correct that the SSA website lists the addition of MS as “Malignant Multiple Sclerosis.” The National MS Society worked closely with the SSA to get MS added and continued to work closely with SSA to interpret what “malignant MS” means. This led to more descriptive language that includes both advanced and aggressive MS, which we believe expands what could have been a more narrow interpretation and will help more people living with advanced or aggressive MS receive Social Security benefits in a more timely fashion.

Thank you!

Unknown said...

I was diagnoised with primary progressive ms and filed for ssdi.....i was approved in less than 3 months !!!!

Leslie D. said...

This is great, but I feel that ALL forms of MS should be added to this list. I have a story similar to Yvonne Brown's and I have Relapsing-Remitting Multiple Sclerosis. I signed up today to be an activist and don't feel that MS patients should suffer undue stress to just survive in this world, when our neurologists tell us that stress is the WORST thing for us as it exacerbates our symptoms. Since our disease is already recognized by the SSA, they should not deny our SSDI insurance benefit claims repeatedly, make us wait 4+ years and send us to the Appeals Council when our medical records and our disease already proves that many of us with MS will NEVER be able to work full-time again and some us with more progressive forms will NEVER be able to work again - period!

MS Activist said...

Dear Leslie D,

The Society agrees that the Social Security application process should be as streamlined as possible. While the intention of the Compassionate Allowances initiative is to process claims for the those with the greatest disability, the program also benefits other applicants. By quickly processing claims for those that qualify under Compassionate Allowances, the Social Security Administration is able to focus more time and attention on the other applicants who are applying under the typical stream. The Society will continue to advocate for additional ways to ensure that the process is as quick as possible for all who apply for SSDI.