commentary--adjustment for "compassionate allowances"

From: Lorelei Pepi [info@loreleipepi.com] Sent: Thursday, August 23, 2007 7:42 PM To: ^Regulations Subject: commentary: adjustment for "compassionate allowances" Dear Commissioner Astrue- I am submitting a very, very sincere plea towards a rule/process adjustment on "Restrictions on Affiliate Transactions 20 CFR Parts 404, 405, and 416 Improvements, Social Security; Docket No. SSA 2007–0053," and "Docket No. SSA–2007–0045, Notice of proposed rulemaking." Please include the disease of SARCOIDOSIS on your list of recognized diseases for support of disability awards of "compassionate allowances." This disease is a horror for the individual's body, creating an inflammation of internal organs, a compromised immune system if not a near shut-down, granuloma manifestation inside organs. A much more complete description is available on this site: http://www.stopsarcoidosis.org/sarcoidosis/diseasefacts.htm My brother (39 y.o.) has been denied access to disability coverage 3 times through the Florida state system, because the doctors that are on the "cut and paste" social security processing circuit are completely unaware of this disease and couldn't seem to determine anything amiss in their brief 10 minute interviews. My brother's body is riddled with thrush, open sores, cysts, enlarged and swollen lungs that make it problematic for breathing, major arthritis that is causing numbness in his arms and now requires surgery, and painful joints that make it painful for him to walk or sit for prolonged periods of time. This disease has aggravated his mental health to a point of sustained anxiety where he is very hesitant to go into public places and cannot ride in a vehicle without severe emotional distress. His wife's hunt to find a job in Florida with health coverage was prolonged, and his system to deteriorate further because of lack of access to doctor's. Their finances just couldn't support it. As a result, their finances have been devastated, their home turned upside down, and his illness has deepened. He has now been diagnosed as chronic and has a dangerously compromised immune system since he was exposed to the toxic staph virus that has become an epidemic in this entire country, the Mercer Staph virus (http://en.wikipedia.org/wiki/Methicillin-resistant_Staphylococcus_aureus.) And still, he is denied any coverage, denied access to the funds that he has faithfully put into the social security system. We all believe that if the doctors in Florida and elsewhere were aware of this rare disease (approx 2% of the population) that this denial of disability would not occur. What plagues my mind is the fact that Sarcoidosis can actually lead to death. Commissioner Astrue, please affect a change in this law that will support immediate inclusion of this disease as a recognized debilitating illness. His family would be in a much better place if this had been the case when they first made their request for disability coverage. sincerely, Lorelei Pepi 88 Petteys Ave Providence, RI 02909 (617)894-0171 (e) info@loreleipepi.com