June Wheeler wants the premier and the provincial health minister to wear blindfolds for a few weeks, so they can experience what it's like to be blind.
The 73-year-old said they need to understand what it's like to not be able to read, cook or walk alone.
Wheeler and her family, who live in Summerside on the west coast, are angry that the province won't help pay for the drug that has given her back her vision, or the travel costs she's incurring to get the treatment.
Wheeler has age-related macular degeneration, which kills off cells in the macula - the part of the eye that is responsible for central vision. People with this condition have normal peripheral vision, while their central vision is obscured.
"It wasn't clear, it was like clouds," Wheeler said of how her vision was, adding it was so bad she used to actually ask her daughter if it was cloudy outside.
"And sometimes she'd say, 'Mom, it's cloudy out.' She used to do that to make me feel good, I s'pose."
About 90 per cent of people with this type of macular degeneration go blind.
Wheeler was nearly blind for five years.
Then, her doctors sent her St. John's to be treated with the experimental drug Avastin.
"I went up to the hairdresser's the other day and I went up the road all by myself, like I did five or six years ago," she said, explaining how her sight has improved.
"(Before), I was taking little short steps, because I wasn't sure of my steps, but now I can go on by myself.
"I wouldn't want to live if I went blind."
Wheeler's daughter, Daphne Park, said she cried when her mother was able to read a flyer to her after having her first treatment last month.
"That was the first time in years that she has been able to read something. ... (Before), she wasn't capable of picking up her groceries because she couldn't see to do it. She picked them up (herself) in April," Park said. "She's doing things she hasn't done in years with one treatment. I can't wait for the other two."
Wheeler wasn't a candidate for the provincially approved medication, Visudyne, which is covered by MCP. However, she was a candidate for Avastin, which has only been approved for treating colorectal cancer. Because Avastin is considered to be experimental for eye disease, Wheeler has to pay $4,500 for three treatments, as well as the cost of travel to St. John's to see a specialist, plus three tests that cost $100 apiece.
Dr. Ed Hunt, a provincial health consultant, said Avastin hasn't gone through the first of three necessary stages of approval, and without that approval for this type of use, the province can't advise patients to take it.
"We've had drugs before that have shown some promise, but when you do a proper controlled study it turns out to be not as effective as they thought," Hunt said.
"It might be the best thing since sliced bread, but we don't have the data and the research to show that it is safe or that it's effective, and so that's where we stand now."
Hunt said he wouldn't recommend the drug to his patients because there are some side-effects, including blood pressure hikes and blood clots.
"I know people are going blind, they're desperate ... and there's nothing more I'd like to say than, you know, we'd like to fund something that works, but until we know something is safe and it works, we just couldn't take a chance."
Meanwhile, the family will keep fighting to have the treatment covered for people with the disease.
"It's not only my mother affected by this. Since I have begun my battle with government I am getting calls from all over ...," Park said.
"They're telling me that I'm fighting for all of them."
alisha.morrissey@gmail.com
Vision Quest
- Published on May 14th, 2007
- Published on July 1st, 2010
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Alisha Morrissey
The Telegram
Family lobbying to have experimental treatment costs covered
June Wheeler wants the premier and the provincial health minister to wear blindfolds for a few weeks, so they can experience what it's like to be blind.
The 73-year-old said they need to understand what it's like to not be able to read, cook or walk alone.
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Comments
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- Daphne
- - July 2nd, 2010 at 13:35:17
My email address is daphnepark55@hotmail.com and I look forward to hearing from anyone who is having the same problems as my mother. Check out our website listed in my brothers comments. It is still in the early stages but we hope it will grow.
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- Barry
- - July 2nd, 2010 at 13:25:48
I'm Daphne's brother, and we are fighting tooth and nail over this.
We've started an advocacy & support site at www.amdsupport.ca ... the contact information is there for me. -
- Barry
- - July 2nd, 2010 at 13:23:29
Geoff, I can sympathize with your troubles in having to deal with Ross Wiseman. I have sent him countless emails, and have tried many times to reach him on the phone. The only response that I get is He's a busy man or You won't get to speak with him in the near future . His contempt for the people of this province and to those in his district astounds me. He should resign his post and let someone step forward who can deal with the people when the needs arise.
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- Lisa
- - July 2nd, 2010 at 13:22:23
Our family is also dealing with the issue for our elderly mother. Is there contact information for Park?
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- Geoff
- - July 2nd, 2010 at 13:16:56
My father was diagnosed a little over a year ago with the disease and for someone who is used to wood-working in his retirement this has been a definite set back. He has the dry form of AMD and we are at a loss as to what is out there to treat it and every time we think we have found something the doctors tell us it is not of any use.
As for Ross Wiseman and his effectiveness in our district he really hasn't been before this recent appointment and I don't see him being effective as minister. As someone who is a resident in his district I have yet to be convince of the benfits he is having in Trinity North. -
- Daphne
- - July 1st, 2010 at 20:25:15
My email address is daphnepark55@hotmail.com and I look forward to hearing from anyone who is having the same problems as my mother. Check out our website listed in my brothers comments. It is still in the early stages but we hope it will grow.
-
- Barry
- - July 1st, 2010 at 20:12:21
I'm Daphne's brother, and we are fighting tooth and nail over this.
We've started an advocacy & support site at www.amdsupport.ca ... the contact information is there for me. -
- Barry
- - July 1st, 2010 at 20:08:35
Geoff, I can sympathize with your troubles in having to deal with Ross Wiseman. I have sent him countless emails, and have tried many times to reach him on the phone. The only response that I get is He's a busy man or You won't get to speak with him in the near future . His contempt for the people of this province and to those in his district astounds me. He should resign his post and let someone step forward who can deal with the people when the needs arise.
-
- Lisa
- - July 1st, 2010 at 20:06:40
Our family is also dealing with the issue for our elderly mother. Is there contact information for Park?
-
- Geoff
- - July 1st, 2010 at 19:57:12
My father was diagnosed a little over a year ago with the disease and for someone who is used to wood-working in his retirement this has been a definite set back. He has the dry form of AMD and we are at a loss as to what is out there to treat it and every time we think we have found something the doctors tell us it is not of any use.
As for Ross Wiseman and his effectiveness in our district he really hasn't been before this recent appointment and I don't see him being effective as minister. As someone who is a resident in his district I have yet to be convince of the benfits he is having in Trinity North.
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