Hearings receive testimony on RA & other autoimmune diseases
Hearings were held yesterday, March 16th, about adding some autoimmune diseases to a list of conditions deemed disabling enough to be given specific consideration and hopefully quicker Social Security Disability approval.
The list, called the Compassionate Allowances List currently includes 88 conditions. This week’s hearing was the 7th such hearing to consider adding conditions to the list.
This Social Security page lists all of those who testified at the “Compassionate Allowances Outreach Hearing on Autoimmune Diseases.” The links are on that page to read the actual testimonies given regarding the conditions being considered such as Rheumatoid Arthritis, Lupus, Multiple Sclerosis, and Scleroderma. Some testimonies were given by doctors and some by leaders of patient advocacy organizations, and some directly by patients. There was an MS patient, a Lupus patient, and a Scleroderma patient, but not an RA patient.
It’s puzzling that RA is not on the Compassion Allowance List already
Since it’s been called the world’s number one “crippling disease,” it is surprising that RA is not on the list already.1
Being denied SSD the first time one applies is the established norm. Several disability websites claim that the initial denial rate is about 2/3 overall and about the same for people with RA.
Unfortunately, when Rheumatoid Arthritis strikes a person during the prime years of productivity (approximately ages 35-50), it tends to be more severe. However, since people approved for disability during these years represent more years of receiving assistance, they are less likely to be approved. This is one of many inconsistencies in the system which reflects a poor understanding of what RA is and how it affects people who live with it.
Why the RA testimony worries me some tonight
Dr. Eric Gall with the Arthritis Foundation gave the testimony on RA. The testimony did explain that Rheumatoid Arthritis is a serious disease which causes disability and reaches farther than joints. That was good. But I also wished that an RA patient could have been there to represent RA so that these points would have been made clear for the record, helping all people with RA to have the best chance possible of SSD approval.
- It was not made clear that many RA patients have negative blood tests. Gall said: “People with RA are anemic and have blood markers of inflammation with elevated erythrocyte sedimentation rates (ESR) and C – reactive protein levels. Two auto antibodies are also found in the blood of people with RA: rheumatoid factor (RF) and anti-cyclic citrullinated peptide (CCP) antibodies.”
- RA treatment effectiveness seemed to be overstated. It was not made clear how many RA patients are not helped by treatment (at least a third). Furthermore, very few people who are helped are helped to the level of 70% improvement. And finally, most are helped temporarily since medications usually stop working eventually.
- The description of the onset of RA seemed inadequate because there is no typical RA presentation. Gall: “The most common symptoms of RA start in the wrists and the small joints of the hands and feet with pain, redness, and swelling, resulting in limited motion, functional impairment and loss of independence. The joint involvement is usually symmetric involving both the right and left sides of the body with morning stiffness that lasts for at least 1-2 hours and may persist all day.”
I haven’t been through the SSD process myself, but many patients have told me that an attorney and appeals were required. To those uneducated about RA, negative blood tests, atypical presentation, or ineffective treatments may seem like suspicious explanations. Therefore it would be better if those facts were documented.
Here’s a typical example from a page about disability filing on ProHealth.com: “The SSA looks for a test to confirm your diagnosis – for rheumatoid arthritis (RA), it’s usually a blood test.”
Some key SSD links
Keep up with the news here on Disability.gov.
Justification for the Compassion Allowance List from socialsecurity.gov:
“Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards. Compassionate allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly…”
- Blood Tests for Rheumatoid Arthritis, part 2
- Being Blessed While Having Rheumatoid Arthritis
- Rheumatoid Arthritis News, Vol.5: Men & Mortality, Vitamin D Research, New RA Meds