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Social Security's Compassionate Allowances Outreach Hearing on Autoimmune Diseases


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#1 red

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Posted 15 March 2011 - 04:43 PM

Hi all, if you are interested in watching Social Security's hearing on Compassionate Allowances for Autoimmune diseases ....

you can get a live webcast of the March 16th meeting (on the Social Security Administration's website).

(Although, I have to say, I've never attempted to view a webcast :emoticon-dont-know: , hopefully it's just as easy as following the link!!)

Hope this hearing will help those of us struggling to get our disability through Social Security streamlined and approved. We'll see!

Red

#2 Sweet

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Posted 16 March 2011 - 11:30 AM

It is as easy as that. I'm watching it now, but my question is this - I'm watching it live, and it lasts all day long. I can't sit here that long, my body won't take it. Do you think we'll be able to watch it as a replay when it's done?
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Sweet

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Posted 16 March 2011 - 11:38 AM

I'm realizing I'm coming in late on this webcast, I think I missed the section where they discussed Sclero specifically. Now they are just referencing to it. :(
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#4 debonair susie

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Posted 16 March 2011 - 12:39 PM

Aaaaw, Sweet...Hopefully, it will be something one WILL be able to view, in small increments later. :emoticon-dont-know:

Nice idea though, Red. Thank you. ^_^
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Susie Kraft
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#5 miocean

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Posted 16 March 2011 - 09:55 PM

Please let us know if we can access it somehow.

miocean
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#6 red

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Posted 17 March 2011 - 06:51 AM

I was able to watch most of the webcast yesterday, although I fell asleep after lunch and missed a bit of it! :glare: My wonderful teenage daughter set up my laptop, complete with earphones, for me so I could lounge in my recliner and view the webcast all day. She brought me cups of tea, then lunch, and afternoon snack and even prepared dinner for the family...I was quite pampered for the day (I probably gained 5 pounds yesterday alone!) :blink:

We can't replay the webcast yet, but since there are the 6 previous compassionate allowance hearings available to watch at our convenience on Social Security's website (from SSA's home page, just search for "compassionate allowances" and go to the Compassionate Allowance home page), I'm sure that at some point yesterday's hearing will be available.

The hearing consisted of presentations from various rheumatologists and autoimmune associations - they had lists of autoimmune diseases, outlined symptoms, progression, prognosis, current treatments available as well as clinical trials and other research being conducted. They had 4 patients (1 each with multiple sclerosis, lupus, diffuse scleroderma and Sjogren's) give their testimony about their disease, including delays in diagnosis, progression of disabling features, their difficulties in day-to-day living, as well as their frustrations navigating through Social Security's "hoops". The belief that since many people with autoimmune disease "look" good, some of their disabling symptoms, such as pain and fatigue, are minimized or ignored by SSA, was emphasized.

The goal of the hearing was to identify diseases, or specific aspects of those diseases, especially those with few effective medical regimens available to reverse or treat the condition, that are considered so severe that documentation of such would automatically quality a patient for permanent disability. Specifically for scleroderma, for example, it was suggested that a rheumatologist's diagnosis of diffuse scleroderma, or pulmonary hypertension, or limited scleroderma with severe GI features, should be alone sufficient to qualify for a compassionate allowance, as these manifestations of the disease are so debilitating.

Don't know how long Social Security's process of evaluating this data, and coming up with additions to the Compassionate Allowance list is, but at least there is hope that there will be some progress towards this goal.

Hope today finds you well, and Happy St. Patrick's Day to you all!

Red

#7 Sweet

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Posted 17 March 2011 - 11:53 AM

I watched the majority of it as well. Missed the first couple of hours, because I forgot about the time difference. They said there would be at transcript up soon to read. It was emotional watching those with the diseases talk, and I was frustrated at times, as to how defensive the SSA staff became in defending themselves. At least it's being talked about.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)