 |
 |
Jim, My sincerest congratulations to you and many thanks for the outstanding contribution you (and no doubt your wife) have made this year to the PD community. My silence has been more a function of the overwhelming changes that have occurred in our lives since Nancy's two pallidotomies. On top of that I am starting up a new business within Shell and time has been at a premium. I have been following all the Udall activity through the Listserv and the PAN news letters but have not been agressive in getting to all of our representatives. That is not a lack of interest just a functiom of time. We do have coverage for about 16 of the 32 representatives but I need to get refocused again. Nancy and I have been speaking to support groups, church groups and in April will speak to the Intercontinental Rotary in Houston. We always talk about the Udall bill but frankly the miracle of her pallidotomy has been what everybody focuses on. By the way I have been active in trying to stop the non coverage policy that the HCFA seems destined to put in place against Pallidotomy surgery. I do plan to attend the PAN conference in Washington WITH MY WIFE but haven't heard anything about the scheduling of that for this year. The Houston Area Parkinson Society is having its annual symposium on May 11 and I am helping put that together now. Could you possibly come down and speak to us about your Udall efforts? We would no doubt arrange to pay for your visit. I have to run now to New Jersey for a few days my 54 year old brother- in-law passed away on Thursday so we will be out of pocket for a few days. Attached is a copy of the letter that I sent to the HCFA: February 4, 1996 Health Care Financing Administration Health Care Financing Administration Mr. Bruce Vladeck Administrator Director Office of Bureau Policy Development 200 Independence Ave. Mr. Thomas Ault Sw Room 314-G 7500 Security Blvd. MSC50114 Washington DC 20201 Baltimore MD. 21244 202-690-7626 410-786- 5635 Gentlemen, I recently read with incredulity the impending decision by the HCFA Technical Advisory Group to issue a "non-coverage policy statement" for the surgical procedure called a pallidotomy. While I am not familiar, with the inner workings of our Federal health care systems I feel compelled to ask you to reconsider this action, at least on moral grounds, if not based on our personal experience and the new lease on life that my wife has been given by this surgical procedure.. My wife has endured PD for 20 years. Her quality of life had been diminishing at a rate that weakened our faith in God, our faith in man and our faith in ourselves. Nancy, my wife, now age fifty was using wheelchairs, walkers, and a variety of mechanical devices at home to enable her to maintain the barest dignity and self dependence. Working or doing much of anything to support herself had not been possible for years. After a failed attempt at an adrenal transplant in 1989, we pursued successfully, this past year, two unilateral pallidotomies which were performed by Doctor Philip Gildenberg at St. Luke's Hospital in Houston. While Nancy didn't run down the hall as Ed did on TV shortly after his surgery. She did rise up from her bed in intensive care two hours after the first surgery and walked two laps around the intensive care unit unmedicated. That morning she laid in bed unmedicated frozen and full of tremor. Completely free of the sinemet induced dyskinesia, she now, gives speeches about PD and her personal triumph, baby sits on a limited basis for her grandchildren and plays golf with me and our local PD golf group. A dream that we had all but given up on 10 years ago. With careful scrutiny of patients, neurosurgeons can perform miracles. We have witnessed several in the Houston area as we have success stories from the Emory program in Atlanta, the program at Baylor College of Medicine in Houston , Dr. Gildenberg's efforts at St. Luke's Hospital and Dr. Laitenen's efforts in Sweden. In every case the patients have returned to work and are doing well. Surely a reliable evaluation procedure can be devised as a guide for teams of surgeons and neurologists to follow as they seek to provide relief from this terrible disease. To deprive those who suffer from this ravaging disease of the benefits of this very powerful surgical procedure seems unthinkable. I appeal to you to reconsider your "non coverage policy" and at the very least leave it open to skilled neurologists and neurosurgeons to apply there talents to this group of suffers. Both my wife and I would be happy to present her story to you or your committee workers on this very complex issue. I am a board member of the Houston Area Parkinson Society and I know I speak the sentiments of the other board members.. We have made a grant to the University of Texas Medical School to assist with the funding of their program and plan to continue to support similar activities in the future. Please don't deprive those Parkinsonian's who might benefit from this procedure from receiving Medicare coverage for the pallidotomy procedure. Respectfully, Robert A. Martone CPA Home 713-358-5168 Office 713-241-2611 Board member and Assistant Treasurer Houston Area Parkinson Society 3614 Forest Village Dr. Kingwood Tx. 77339 with attachments Please stay in touch I hope you can see that I am not in retreat just stuck in the mud but moving forward. ------------------------------------------------------------------------ ----------------- Bob Martone [log in to unmask] ------------------------------------------------------------------------ ----------------- ------- REPLY, Original message follows -------- > Date: Wednesday, 07-Feb-96 09:41 PM > From: [log in to unmask] \ Internet: ([log in to unmask]) > To: Bob Martone \ PRODIGY: (VRGS59A) > > Subject: How have you been? > > Bob, > > Haven't heard from you in quite a while. I hope the silence is a > function of things going well. Give me a call (412-521-9584) when you > get a chance. We're gearing up to pass the Udall Bill this year and the > great state of Texas figures prominently in those plans. > -------- REPLY, End of original message --------