We need a more equitable disability determination process for Lupus sufferers based on our special circumstances. The current system does not accurately reflect the current state of our symptoms, it does not always have qualified specialists making determinations about our unique disease, it does not reflect the early onset that we face, account for the often full-time hours we spend maintaining our health, nor does it properly account for the relapsing nature of our disease.

Originally I was given 3 weeks until organ failure. Only after 2 years of near-death experiences, and simultaneous chemo and dialysis while in the hospital did I apply. After denial and with lots of professional help, I was approved nearly 2 years later. But many fellow Lupus warriors are not so fortunate. Now as a leader in the Lupus community in transition, I see firsthand that many are unjustly repeatedly denied, but cannot work. Many are either fired or die trying to maintain their jobs by skipping appointments and medications or die waiting for approval. This has got to stop.

We can do better as a nation. As Lupus warriors, we already feel invisible. Help to equitably care for and recognize the plight of Lupus and other chronic illness sufferers. Help us and our families overcome. Sign and support this petition and push forward disability reform for Lupus applicants today.

We propose the following:

1. A Lupus applicant's qualification for disability should not be based on 20 year-old outdated American College of Rheumatology Criteria unless updated to be more relevant to today’s more wide reaching symptoms and the current state of Lupus. Lupus is not the same disease it was 20 years ago, with a completely different prognosis. The A.C.R. criteria was not originally meant for diagnosis, but for clinical trials and population studies. Lupus is a specific and complex disease, determinations should be based on current data that is no more than 2 years old.

2. Disability Determination Services should only arrange consultative examinations with the applicant’s primary source of treatment. A reported 73% of doctors reportedly feel uncomfortable diagnosing and treating an autoimmune disease. Any independent parties making determinations should only consist of Rheumatologists who currently actively treat Lupus patients in their practice.

3. Since the onset of Lupus starts at 15, affects most at childbearing age, with more than half at an earlier age having more severity with kidney involvement, we believe that the special exceptions in place should have a lower age for the credit threshold. We believe that the minimum age for special exemptions should start at 18 vs 21 or younger Lupus applicants be given a flat rate benefit of the average SSDI amount. The current 21 year-old threshold puts those with Lupus at an unfair disadvantage considering many may not have the normal 5 to 10 year work history needed to qualify for disability or to actually earn enough credits to have a sufficient benefit amount to survive.

4. Disability qualification and re-determination considerations should include the amount of healthcare activity including appointments and treatments an applicant is currently engaged in for health maintenance. Similar to Social Service’s consideration of a person’s job seeking activities, applicants cannot for example engage in substantial gainful activity if we spend a minimum of 4 hours a day, 2-3 times per week traveling to and attending doctor’s appointments, labs, imaging, treatments, infusions, prescription pick-ups and therapies. Particularly with organ-threatening Systemic Lupus, multiple specialists are required to be seen for continued prescription fulfillment for the medications required to maintain our health. We should not have to choose between keeping a job or staying alive if we are in this predicament and are unable to qualify for disability because our health maintenance time is not currently a consideration.

5. As Lupus is a cyclical disease of flares and remission, approval and re-determination should be based on our flares in the prior term vs. just the time of the determination interview. This is the time frame that should be assessed when determining severity against the Federal Code of Regulation’s definition of basic work activities. Our abilities and aptitudes within that flare should be evaluated, including physical functions and carrying out instructions. We are likely to experience at least those levels of flares again in the future or something more progressive since Systemic Lupus is degenerative. We consider if our worst day becomes our everyday, then this is how we will have to function physically, financially, etc. That is how we budget our futures, money and energy. That is how a disability determination for Lupus should be made by the Social Security Administration.