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----- Original Message> Sent: Wednesday, May 24, 2000 4:36 PM Subject: Re: Fw: An open letter to Michael J. Fox > > >>> "William Harshaw" <[log in to unmask]> 05/24/00 08:31AM >>> > > ----- Original Message ----- > From: "William Harshaw" <[log in to unmask]> > To: "Parkinson's Information Exchange" <[log in to unmask]> > Sent: Wednesday, May 24, 2000 7:26 AM > Subject: An open letter to Michael J. Fox > > > > AN OPEN LETTER TO MICHAEL J. FOX > > > > William A. Harshaw > > 401 - 120 Rosedale Valley Road > > Toronto, ON M4W 1P8 Canada > > (416) 925-4814 > > Fax (416) 925-8146 > > E-mail: [log in to unmask] > > > > Dear Michael: > > > > I can't tell you how much I admire your courage, first in telling > the > > public that you have Parkinson's Disease, second in actively lobbying > for > > research funding to discover the causes and develop the cures for > PD. > > Your sunny disposition coupled with the seemingly effortless ability > to put the > > proposition you are advancing in simple yet non-patronising terms is > a > > tremendous asset. > > > > I have had Parkinson's Disease for twenty years, having been > diagnosed > > when I was thirty-seven. I had to retire on long-term disability when > I was > > forty-five. I had a right side unilateral pallidotomy in 1993 and > was the > > first North American patient to have DBS a year later. I have been > > blessed with a second chance at life as a result of those > operations. > > > > I would like to draw your attention to an aspect of Parkinson's > Disease > > and other neurological conditions that concerns me greatly. That is > the > > question of therapy access. Deep Brain Stimulation was approved by > the > > FDA as palliative therapy for PD on March 31 of this year. It was > approved > > five years ago in Canada. Notwithstanding this approval, hospital > boards and > > provincial ministers of health have not provided the operating funds > and > > operating room time to perform these procedures effectively negating > the > > approval. > > > > Access denied is worse than access unapproved because patients are > put on > > a waiting list of almost infinite length, thus creating false hope > that they > > may actually have the operation. The procedures are cost-effective, > safe > > and improves the patient's quality of life. > > > > I realize, Michael, that your good name is the only currency you > possess > > and that you must be very carefl not to do anything that would > devalue it > > in any way. I urge you to take the question of therapy access as one > of your > > PD causes in Canada where it is a problem, and in the United States > before it > > becomes a problem. > > > > Sincerely, > > > > Bill Harshaw > > > >