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Thanks to you and Bill for sharing his message to the Bureau of Policy and Whatever... In my opinion, there's one thing which might be added for those planning on sending such a letter and to whom it applies. In his message, Bill refers to his pallidotomy returning him to an activ elfie and cites his ability to return to sports such a skiing. (Which is wondeful to hear, Bill! WAY TO GO!). I suggest that additional impact might be made on the govenrnmental watchdog agency if those of us who were, prior to the surgery, on Social Security Disability and/or Medicare and are now working and drawing in a salary and no longer need governmental subsidy of any kind should point THAT out. That this is BECAUSE of our having had a Medicare-paid pallidotomy! Speaking for myself, I now have a wonderful, well paying job wihch I NEVER could have handled prior to my 10/24/94 pallidotomy! And had Medicare not paid for that surgery, I wouldn't have been able to have it in the first place. BTW... my mother is also writing in about this as she knows what it was like for me prior to the surgery and sees me living and working once again. Barb Mallut [log in to unmask] ---------- From: Parkinson's Disease - Information Exchange Network on behalf of MRS VIRGINIA CHRISTIANSEN Sent: Monday, February 12, 1996 5:40 PM To: Multiple recipients of list PARKINSN Subject: Medicare/pallidotomy -- [ From: Virginia Christiansen * EMC.Ver #2.10P ] -- TO: All Bill Thorson of the Westchester Parkinson Support Group relayed to the group that he had been requested by doctors from Emory to write a letter re the proposed Medicare benefits non-coverage for Pallidotomy. They would like as many letters as possible to be sent. I have Bill's permission to share his letter here. You may want to use his letter as a guide and adapt it to your point of view and personal situation. Here's his letter: Mr. Steve Sheingold Bureau of Policy and Development 7500 Security Blvd. MS C50114 Baltimore, Maryland 212454 Dear Mr. Sheingold: I'm writing to you as a means of expressing my support to those who are suffering from Parkinson's Disease and will be denied the significant benefits of the Pallidotomy surgery if they are without the means to pay for it through Medicare benefits coverage. My understanding of the reason for the exclusion of the Pallidotomy procedure is that the surgery is considered experimental. As a person who has a key decision to make in this matter, I hope you would fine it very difficult to believe the classification could apply when the surgery predates the 1950's when Dr. Cooper was actively practicing an unrefined version of the operation. Additionally, the factg that it is so widely practiced and generally accepted more than suggests that the experimental classification be seriously questioned. It is currently the only symptom relief for Parkinsons when the medication no longer works, which generally occurs 4 to 6 years into the disease. I have had Parkinsons for 18 years. One and one-half years ago I had a Pallidotomy performed by Doctors Barcay and DeLong from Emory. As a result, I have been able to rejoin the active world (including downhill skiing). I am greatly distressed when I think that anyone would be denied this opportunity because of the lack of Medicare benefits coverage. Parkinsons Disease has taken a back seat to all other diseases when it comes to researach funding by the National Institute of Health. Please keep this fact in mind when you consider dropping further government support to the 1.5 million Parkinsons patients in the USA. We deserve the support. I hope I can count on yours. Respectfully, Thanks to all who write. Virginia Christiansen [log in to unmask] White Plains, NY 10605