Adding RA to the SSD Compassion Allowances List? | Rheumatoid Arthritis Warrior

Adding RA to the SSD Compassion Allowances List?

Hearings receive testimony on RA & other autoimmune diseases

Warehouse club displayHearings 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.

  1. 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.”
  2. 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.
  3. 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.

Page on Social Security Administration’s website about Evidentiary Requirements for Disability

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…”

Recommended reading

1 http://www.rosalindrussellcenter.ucsf.edu/about_us.html

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

26 thoughts on “Adding RA to the SSD Compassion Allowances List?

  • March 18, 2011 at 8:41 am
    Permalink

    I didn’t read the entire testimony but thanks for summarizing Gall’s key points that he made. It IS a shame there were no RA patients there so they could witness the devastation or hear about it.

    I still work thankfully but worry about the time (If/when it comes) that I may have to go the SSDI route. For the most part, my labs are normal. Guess I’d probably not qualify!

    It is good news that RA might be one of the diseases to get earlier SSDI approval – let’s hope SSA agrees and puts these autoimmune diseases on the list.

    Thanks again Kelly for all your work and the wealth of info you provide for us!!! It is greatly appreciated!

    Reply
    • March 18, 2011 at 9:56 am
      Permalink

      I know you fight hard to keep going & keep working Marie. Normal labs have been a problem for some people – imagine a judge doesn’t know about RA & a doc doesn’t know how to fill out the forms… The person w/lupus testified that a lawyer was her only hope. I hear that all the time. We just need to get accurate & full facts out there on RA & we will!

      The full testimony of Gall does say it’s a real disease & can lead to early death, but as I said, I was concerned in those areas.

      Reply
  • March 18, 2011 at 10:39 am
    Permalink

    Awareness is still key in making any progress with RA. While most people think of it as a joint problem, I have had many related syndromes that can accompany this autoimmune disease. Right now I am dealing with retroperitoneal fibrosis secondary to RA. While this is an extremely rare side effect (one in a million according to my doctors) it just proves that RA is not really arthritis as most people know it and can strike anywhere in the body. I have already lost function of one kidney and we are working on trying to save my second one. I have also had vasculitis secondary to RA that did not present in the usual way and was more difficult to diagnose.

    When my second kidney was attacked I applied for disability due to the frequent office visits and hospitalizations, not to mention just the inability to function normally due to the drugs and the disease. While I have not yet been denied I have not been approved either. Let’s hope the SSA wakes up and realizes we are not a bunch of hypochondriacs.

    Reply
  • March 18, 2011 at 10:53 am
    Permalink

    I was sent an email from the Arthritis Foundation the morning of the hearing asking to help speak out. Why on earth would they leave it until the very last second to send people emails? By the time I read it, it was already history.

    Reply
    • March 18, 2011 at 11:16 am
      Permalink

      Lisa, my goal would be to know about this early enough that you or I could have gone to Baltimore to testify!

      Reply
  • March 18, 2011 at 11:08 am
    Permalink

    I was just approved for Disability this month. I applied 5 and 1/2 months ago. I’ve been disabled for more than 2 years now, but I assumed I would be denied, therefore didn’t apply earlier. I have always tested RA negative but with extremely high Sed rate and CCPs. My rheumatoligist did’t even list RA in my file until I told her I had applied for Disability. She did this so as not to brand me with a pre-existing condition for insurance.

    My application process was actually very smooth. I completed the application online and sent in my Dr Authorization form. I didn’t hear anything from SSA until finding a large deposit in my bank account last week. Finally got the letter from the SSA yesterday.

    If you haven’t applied due to fear of being denied, I say apply anyway because you never know. Most importantly is to list not just RA as a condition… list every symptom that makes it impossible for you to work such as Chronic Fatigue, Chronic cramping in the hands and feet, etc.

    Thankfully my RA is currently under control with Humira.. I just hope it lasts.

    Reply
  • March 18, 2011 at 12:23 pm
    Permalink

    I thought RA was already on the list of SSD Compassion Allowances? It was listed as “inflammatory diseases” (or something like that). That’s what my SSD Attorney told me, anyway. SSD is still a disgustingly long process, though. I’ve been waiting for 5 years now. I went through the initial denial, then appeal, then denial, then adjudication hearing, then appeals council. Currently my case is back with the adjudication judge. Lord only knows how long it will take from this point on. I pray they make up their mind soon. I’m drowning!!

    Reply
  • March 18, 2011 at 12:41 pm
    Permalink

    I got dianosed at the age of 20 I am 25 and there are days that I am so swollen that I litterly can not walk its horrible. I was one of the luckly ones that got approved for disability on the first try. I quit my job March 5th had the interview March 10th and I had my approval letter by the end of April I just couldn’t believe it I was in shock. I know I was lucky which is rare usually If i have luck its the bad luck but I am thankful that I got it. I hope people who need it will be able to get it without without a fight but I know thats living in a dream world.

    Reply
  • March 18, 2011 at 1:06 pm
    Permalink

    I was forced to quit my job in 2008 after having RA for 20+ years and fighting to keep working as long as possible. My long term disability insurance, through my employer, forced me to apply for SSDI. I have always been RA negative and my other labs have never been anything spectacular. However I have had a knee replacement from joint damage.

    They send you lots of forms to fill out about how the disease affects your ability to function on a daily basis and also for a family member to fill out. They question how it affects you emotionally. Be completely honest on these forms. Do not try to make it as though this is no big deal as we usually do.

    They have you see a psychiatrist and another physician to evaluate you. At least that was my experience. I was very nervous about all of this. I was sure another physician was going to say I did not qualify. However, I told him I would much rather be working than going on disability with this disease. He had me walk for him and examined my hands which were swollen and painful at that time. He was extremely kind. Within 30 days I had been approved which is pretty much unheard of. I really think the physician recognized I was not another person trying to manipulate the system but I had a real problem. I think others with RA would find they might have similar results. Don’t be afraid to try.

    Reply
  • March 18, 2011 at 2:02 pm
    Permalink

    Kelly, thank you so much for this post. I would probably not have known about this otherwise, and it’s very important to me. I had to go through the whole process, including an attorney that took almost $6,000 from my back wages. It hurts me that we (anyone with RA who NEEDS HELP) must go through this process of either not getting it, or not knowing if we will get it. We live in the United States of America, we take care of those who can’t take care of themselves…at least, we should. There should be no question, if an RA patient asks for help b/c he/she cannot work, as to whether or not they will get it!
    We have to wait about 2 years, and pay a lawyer 25% or $6000. We are at the mercy of our doctors, lawyers, a medical review board, and eventually a judge. Thank God I was approved, I can’t complain about that. I’m OK now, but for that 2 years, I was stressed to no end, and couldn’t afford things I needed – thank God for parents too!
    What gets me is, I applied and was denied, as you said, that’s common. But when I went to my hearing, it only took like 5 minutes before the judge approved me. If it was that apparent that I needed it that it only takes a few minutes, why wasn’t I saved the trouble of a hearing in the first place? I didn’t submit more medical evidence, other than a questionnaire from my rheumy… what was different? My condition was the same at the hearing as it was when I was denied. My lawyer answered a couple of questions, the employment expert answered a couple of questions, and the judge approved me for a year (of course, my “condition may improve”, as the judge said).
    If we ask for help, we should not be questioned about it. Period.

    Reply
    • March 18, 2011 at 10:12 pm
      Permalink

      That makes it sound like the first denial was automatic. :/

      Reply
  • March 18, 2011 at 2:50 pm
    Permalink

    I can’t believe RA isn’t on the list. As a 25 year old, soon to be mother, who has always had RA, first JRA and now RA, I see this as really sad. What happens if in the next few years I can’t perform my job? I work in technology and it’s very important for me to have mobility and for my joints to not be stiff at all and I’m constantly worried about not being able to complete work tasks. If something happened, would I be turned down since RA isn’t approved and I’m incredibly young compared to the demographics? I just think it’s a shame.

    Reply
  • March 18, 2011 at 7:54 pm
    Permalink

    I remember the time I applied for SSD. They sent me to the SSD doctor of their choice (a regular MD, btw, not a specialist). He asked me if I could raise my arm over my head. Well, I could, after about 5 minutes of yelps and sweating and even a nurse “helping” me. So, that was one criteria I didn’t meet. Then he asked me if I could sit for 8 hours at a time. I told him that, many days, I had no choice. I had to sit or lie down for at least 8 hours because getting out of my house was no option, and I was on the verge of losing my job for that reason. Another criteria I didn’t meet. I also had worked within the past 5 years, a big no-no if you want to qualify. I finally realized that the SSD doc had a job to do: to disqualify me.

    Reply
    • March 18, 2011 at 9:52 pm
      Permalink

      That’s sad. Most people I know who apply do it because they cannot work & can barely care for themselves. It is humiliating to have someone trying to prove we aren’t telling the truth.

      Reply
  • March 18, 2011 at 11:24 pm
    Permalink

    Most people with chronic illness go through life downplaying their symptoms to others and to themselves, as a survival mechanism. You often have to push aside the pain, depression, frustration, fear, etc. You have to find tricks, or shortcuts, or new standards. Most people have to work in order to have health insurance and feel pressured to misrepresent their condition in order to get hired (you don’t have to say anything in an interview, but you do have to speak up if you need to request ADA accommodations), to stay hired (it’s not always legal, but lots of companies find loopholes to fire people), or to get promotions.

    I think the disability process exploits these traits. It can also be very tough emotionally to really sit down with a bunch of paperwork and explain in detail ALL the difficulties you are dealing with.

    I live in fear of one day having no choice but to apply for disability. I hope that day never comes, just like I’m sure every legitimately ill person wishes the same for themselves.

    My heart goes out to you all, either dealing with the process, or dreading it.

    Reply
  • March 19, 2011 at 2:35 pm
    Permalink

    Carly- Thank you for making a very important point. I toughed it out for years before deciding to apply for SSDI. I have mostly been lucky with it, but the loss of my career and the identity it gave me has been devastating. There is a whole mythology out there that SS recipients, Medicare recipients and others who receive assistance due to medical problems are lazy or working the system. Until we begin to change that perception we will continue to have inadequate health care in one of the wealthiest countries in the world.

    Reply
  • May 3, 2011 at 3:44 pm
    Permalink

    Hello , I am 37 years old was diagnosed with RA in 2004. I worked till jan 2010 till I couldnt anymore. I lost insurance in 2006 and have not found a RA doctor that will take me since . I cannot do anything just cry alot cant even stand from toilet without full assistance I applied for SSI in november of 2010. they sent me to their doctor in February and was swollen and red fever in all joints had to have help getting undressed just to have doctor come in room and refuse physical because she said it would hurt me way too much so took blood and that was in . Last month I got my denial letter she said she sees I do have RA but not damaged enough yet can work as a cashier!!! How ? I cannot dress myself or brush my hair or drive or stand at a cashier …. I am lost.

    Reply
    • May 3, 2011 at 6:47 pm
      Permalink

      That is terrible Deana. I hope you can re-apply. I hear most people have to.

      Reply
      • May 3, 2011 at 9:07 pm
        Permalink

        I am hopeing it works , everyone says I still need to be under a doctors care but how?? RA doctors want insurance or at least money. I feel stuck but am trying to hold on to hope, I feel embarrassed and withdrawn from life.

        Reply
  • April 19, 2013 at 9:57 am
    Permalink

    Kelly.
    I have been through the SSD Circus.It took 2 years,2 applications,2 appeals,an attorney,a court hearing,a bunch of embarrassment,tears,fear,and confusion. Make copies of all your applications and all correspondence w/SSD. Go for an attorney always, you will need one if you are turned down twice like I was and you will have to go to appeals court. I got to the hearing and the judge had looked my case over prior to this,(thank God)so it was short and to the point. He said that the SSD workers had not considered all of my health issues together, and he ruled in my favor. It was a hard road as my 7 year old son & I were alone,living in a small apt and I was not working of course. Here is the list of documented conditions I presented with.

    RA, non-responding to meds. Chronic Pain Syndrome, Severe Disc degeneration @ L5S1 w/spinal stenosis,
    Disc degeneration @C5 w/Spinal cord contact and stenosis.
    Dysthymia, (long term low grade depression) W/ Major depression.
    Long standing Full thickness Rotator cuff tear,right shoulder, Unrepairable.. TMJ, Mutipal types of Headaches.

    It was loads of work to get functional reports filled out and signed by doctors,getting med records (this is why you get the last appointment record at your next appt), driving trips to the attorney down town,(25 miles away)and the waiting with no money, no food,and no dignity a lot of times. Very sad time for us. We are coming up for a 3 year review soon,I am not looking forward to it but things w/ my health are not better ,they are worse. add
    Microscopic colitis.
    MGUS,(Multiple Myeloma protein IGM M,
    peripheral neuropathy, hands,forearms,feet & lower leg.
    Both Labrums in hips are torn,
    heart valve problems(murmur),PAC w/aberrant conduction =A FIB=angina.
    Custer headaches,Migraines
    & a few little thing as well. I want to leave this on a good note, God is GOOD!!! Why? He gave me and the world my lovely beautiful son. I am sure that me being so sick has a purpose! I hope I am doing it justice. Thank you Kelly.

    Reply
  • August 23, 2013 at 9:19 pm
    Permalink

    Kelly:
    I started having symptoms of pain in my wrists and finger in 2005. I was diagnosed with RA in 2006 based on MRI findings not bloodwork. Erosions were present in the wrists. Applied for SSD in December 2008. I was denied. I appealed for reconsideration and was approved in August 2009. I had talked with a lawyer and was ready to go there but it wasn’t necessary. By the time of the appeal for reconsideration I had both wrists repaired for carpal tunnel and my knee for cartilage damage. Documentation is the key. Even if you can do an activity on a good day you have to think about how often you have a good day and therefore how often you can really do the activity. How do you and or your family suffer because of your illness? Winning is not easy but it can be done. I hate this disease. I hate the limitations it imposes on my life. But I try to do what I can. I try to push through the pain when I can. It shouldn’t be so hard to get help with such a crippling disease!

    Reply
    • January 11, 2014 at 12:19 am
      Permalink

      Hi Ruth,

      My name is Amy and I began to have RA symptoms 8 years ago. Two years ago I stopped working due to my daughter having a significant illness. I believed that I would return to work when she was well. She recovered (hallelujah!) but my RA had worsened to the point that I could no longer work – the pain and fatigue were not constant (24/7), but consistent enough (periodic throughout the day) that I could not sustain the level of effort required by my job.

      I am sero-negative and have not had to have joint replacement. I haven’t bother applying for SSI disability because I figured there would be no way I would be awarded. Do you have any recommendations for me on what information to compile? Or direct me to any links/pages you found helpful in this process. I’d appreciate any suggestions you have.

      Thanks,
      Amy

      Reply
  • November 6, 2015 at 1:59 pm
    Permalink

    I went through the SSDI procedure. Denied twice, got an attorney, had a hearing and answered the judges questiobs. Worked as a nurse for 38 years. Worked with R/A, Sjogrens, every arthritis you can name ( had never heard of Osteopenia) for 8 years till I couldn’t. The fact that i’m seronegative never came up. Weird. After my diagnosis, I questioned every doctor about seronegative and they all said, “Just look at you, you have it” long story short was granted SSDI.book two years. I feel guilty about it for some crazy reason, I guess cause I have worked since I was 16 y/o. I am going on 59 /o and wish I could work. Ya’ll keep trying for your SSDI

    Reply
  • November 6, 2015 at 5:48 pm
    Permalink

    Apologies for the errors above. Typing is hard.

    Reply
  • November 22, 2016 at 10:56 am
    Permalink

    I have been recently diagnosed, but only because there were no Rheumatologists around my rural area. My factor was high 4 yrs ago, joints swollen, fever pain and oh the fatigue, did I mention the fatigue? I am an RN. An accomplishment that I am very proud of as I am the only one out of my family who has graduated from college. Being on my feet was miserable for years, but I didn’t know of any other way. After having my body abused by management that did not want to hire enough people, I switched jobs to a desk job. It actually was going pretty good til I tripped on a 100+ year old step and twisted my hip and back so bad that I had to have a total hip replacement. Apparently my body’s immune system was lower because every joint in my body has screamed and clawed at me, trying to get the most attention. I filed for SSDI but was denied. They said that I can work doing “some other kind of work”. I’m not sure what kind of work they mean. I have filed an appeal but I know it is time consuming. I just wish they would look at my work history. They can see that I have worked steady and consistent for 30 yrs, making a whole lot more money that the SSDI check would be. Why would I voluntarily take a 40,000$ a yr pay cut? I’m sorry, I’m just very frustrated. I am a very honest person and I am not used to people not believing me.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *


“imaware™
    Advertisement
Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.