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Tranquility…
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Tranquility…
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More Violet News…
Saskatchewan girl waiting for help with rare disease
Her family is asking for help with the treatment from the provincial government
Reported by Patrick Book
First Posted: Aug 2, 2012 3:26pm | Last Updated: Aug 2, 2012 3:28pm
Violet Revet is a very sick little girl and her family is worried the province isn’t moving quickly enough to help her.
The three year old from Langenburg is one of only nine people in Canada diagnosed with
Mucopolysaccharidosis VI (MPS-VI). The ultra-rare disease has no cure and the longer Revet goes without treatment the shorter her life could be.
“Violet right now without treatment is definitely going to suffer and that’s really devastating for the family,” explained Andrew McFayden in an interview Wednesday from his home in Ontario.
McFayden knows all too well the impact of MPS-VI. His son Isaac was diagnosed with it in 2005. McFayden said the disease ravages the body if left untreated.
“It’s a very devastating condition. Essentially kids that are diagnosed with MPS lack an enzyme in their blood that breaks down all the complex sugars. Because those complex sugars that occur naturally in the body don’t break down they need to find a place to go and so they end up being stored in the bones, tissues, organs, and muscles and it leads to many progressive symptoms: heart and airway disease, progressive stiffening of the joints, corneal clouding, spinal cord compression. Essentially every muscle, tissue, and organ in the body is affected by this disease with the exception of the brain.”
McFayden was told Isaac would only have seven or eight years to live. That was before doctors realized a treatment was making the rounds in the UK and the US, a synthetic enzyme known as naglazyme that acts as a replacement in the body.
Isaac could get access to it under a special access program but the drug wasn’t covered in Ontario. It took McFayden eight months of lobbying before the provincial government there agreed to pay for it and he suspected the delay in Violet’s case is the same as the delay there.
“It’s (up to) a million dollars a year, so I understand that governments have to look closely at this type of thing. Usually what they say they have to look at is the safety of it but it’s already available in the United States, most of the UK…many, many other countries have this. The safety has been proven. Essentially it comes down to dollars and cents and (I believe) that’s why these provinces are delaying.”
Thanks to weekly treatments many of isaac’s symptoms were reversed. It’s given the boy a new lease on life as his family hopes that a cure could one day be found.
Asking for help
After her diagnosis Violet’s family made a request to Saskatchewan’s health ministry for funding so she can get the same treatments. After going more than six months without an answer they went to McFayden for help and he says time is very much of the essence.
“Early detection and early treatment of this conditions is paramount to the future success of children with MPS-VI,” he asserted.
In an effort to spur the government to action McFadyen and supporters of The Isaac Foundation, an advocacy and fund raising group he started to help others with the disease, have been lobbying Premier Brad Wall via the social networking web site Twitter.
On Wednesday the Premier responded, saying they had his attention and revealing that he had directed the Health Ministry to contact the Revet family director. But McFadyen says lip service doesn’t do a sick little girl any favours.
“In Canada we’re supposed to have equal and fair access to health care and right now Violet is not receiving that.”
Tracey Smith is the director of pharmaceutical services for the ministry. She said the delay it is not about the cost of the drug. She denied that any unnecessary delays have happened, insisting the government didn’t get the family’s funding request until July 9th.
“We received the request that day and we have been reviewing the request. We’re working as quickly as possible in order to make a decision and communicate that back to the family.”
She said every funding application goes through a similar review process but she stressed the ministry is looking at the fact that the treatment is already paid for in Ontario, Quebec, and B-C, among other things.
Smith said she’s hopeful a decision will be made in a few weeks but she won’t say what the likelihood of approval is.
McFayden is sorry to hear it; he said work needs to begin as soon as possible because pharmacists and hospital staff that will be working with Revet will need weeks of training before treatments can begin.
Edited by CJME’s Lisa Schick.
Isaac reading to Gabriel. #precious
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My Motivation…Always.
My motivation for doing what I do:
Last night I spent some time with Isaac and Gabriel, and apologized for the fact that I haven’t had much time for them this summer (between ProjectOneMillion and our Fight for Violet). I told them that I wish it was different, and that I’ll soon have more time to do all the fun things we love to do.
I then explained that all the hard work we’re putting into things will save Violet, just like it saved Jasper last year. Isaac started to cry, ran over, hugged me, and whipered, “Just like you saved me, Daddy.”
We CAN make a difference, no matter how tough the road is while we do it.
Premier Agrees To Look Into Treatment For Girl
Joe Couture, The StarPhoenix
Published: Thursday, August 02, 2012
After a Twitter campaign urged him to get involved, Premier Brad Wall said on the social networking site the Health Ministry has been asked to look into the case of a three-year-old Saskatchewan girl dealing with a rare disease.
A search for @PremierBradWall Wednesday resulted in a feed full of tweets from the last several days directed at the premier – who was travelling with his family back to Saskatchewan – asking him to ensure Violet Revet, a Langenburg girl, receives treatment for a rare enzyme deficiency called MPS VI, or Maroteaux-Lamy syndrome.
“The minister’s office has been asked to look into it,” Wall tweeted in reply to Ontario-based Andrew McFadyen of the Isaac Foundation, who organized the campaign and put out a news release later in the day. McFadyen’s son, Isaac, has the same condition as Revet and the foundation raises money for research and advocates for families of those with the disease.
“Public pressure on governments, we know, works,” McFadyen said in an interview Wednesday about the Twitter effort, noting many people are interested in the Isaac Foundation and have been involved in campaigns to ensure those with the disease receive treatment.
McFadyen said sufferers of MPS VI lack an enzyme in their blood that breaks down cellular waste, which instead builds up in bones, tissues, organs and muscles, leading to many symptoms including heart and airway disease, corneal clouding, stiffening of joints, shortened stature and premature death. There are nine confirmed cases in Canada and about 1,100 worldwide.
Though there is no known cure for MPS VI, McFadyen said a therapy exists, designed to provide a synthetic version of the missing enzyme through weekly doses. The cost can range from $300,000 per year for a child to $1 million per year for a young adult.
The treatment is only available to Canadian patients through a federal special access program, but is being used for patients in Ontario, British Columbia and Quebec through that program and is funded by the provincial governments, McFadyen said.
“Isaac was the first person in Canada to successfully bring this treatment here and it’s done wonders,” he said. “It’s not a cure. It’s more of a lifeboat.”
Tracey Smith, director of pharmaceutical services with the Saskatchewan Drug Plan, said Wednesday the request is being considered.
“We hope to have a decision in the next couple of weeks,” Smith said.
“We are aware of this request and the request for coverage of this particular drug was made to the drug plan on July 9 of 2012,” Smith added. “We do have a mechanism for reviewing these types of requests and we’re basically looking at the request and are working as quickly as we can to make a decision.”
A variety of factors are examined when considering a request like this one, she said, noting those include effectiveness of the drug, treatment guidelines, safety information and the cost impact. McFadyen said it took 18 months for Violet to be diagnosed and seven months from her diagnosis for the application to be received by the ministry. He urged quick action, noting long appeal processes have been required in other provinces where the treatment has eventually been approved.
“There is zero guarantee that this decision is going to be positive for Violet and her family,” he said.
The Revet family was travelling to Saskatchewan from Ontario on Wednesday and could not be reached.
jcouture@thestarphoenix.com
Violet Revet in the News…
After a Twitter campaign urged him to get involved, Premier Brad Wall said on the social networking site the Health Ministry has been asked to look into the case of a three-year-old Saskatchewan girl dealing with a rare disease.
A search for @PremierBradWall Wednesday resulted in a feed full of tweets from the last several days directed at the premier – who was travelling with his family back to Saskatchewan – asking him to ensure Violet Revet, a Langenburg girl, receives treatment for a rare enzyme deficiency called MPS VI, or Maroteaux-Lamy syndrome.
“The minister’s office has been asked to look into it,” Wall tweeted in reply to Ontario-based Andrew McFadyen of the Isaac Foundation, who organized the campaign and put out a news release later in the day. McFadyen’s son, Isaac, has the same condition as Revet and the foundation raises money for research and advocates for families of those with the disease.
“Public pressure on governments, we know, works,” McFadyen said in an interview Wednesday about the Twitter effort, noting many people are interested in the Isaac Foundation and have been involved in campaigns to ensure those with the disease receive treatment.
McFadyen said sufferers of MPS VI lack an enzyme in their blood that breaks down cellular waste, which instead builds up in bones, tissues, organs and muscles, leading to many symptoms including heart and airway disease, corneal clouding, stiffening of joints, shortened stature and premature death. There are nine confirmed cases in Canada and about 1,100 worldwide.
Though there is no known cure for MPS VI, McFadyen said a therapy exists, designed to provide a synthetic version of the missing enzyme through weekly doses. The cost can range from $300,000 per year for a child to $1 million per year for a young adult.
The treatment is only available to Canadian patients through a federal special access program, but is being used for patients in Ontario, British Columbia and Quebec through that program and is funded by the provincial governments, McFadyen said.
“Isaac was the first person in Canada to successfully bring this treatment here and it’s done wonders,” he said. “It’s not a cure. It’s more of a lifeboat.”
Tracey Smith, director of pharmaceutical services with the Saskatchewan Drug Plan, said Wednesday the request is being considered.
“We hope to have a decision in the next couple of weeks,” Smith said.
“We are aware of this request and the request for coverage of this particular drug was made to the drug plan on July 9 of 2012,” Smith added. “We do have a mechanism for reviewing these types of requests and we’re basically looking at the request and are working as quickly as we can to make a decision.”
A variety of factors are examined when considering a request like this one, she said, noting those include effectiveness of the drug, treatment guidelines, safety information and the cost impact. McFadyen said it took 18 months for Violet to be diagnosed and seven months from her diagnosis for the application to be received by the ministry. He urged quick action, noting long appeal processes have been required in other provinces where the treatment has eventually been approved.
“There is zero guarantee that this decision is going to be positive for Violet and her family,” he said.
The Revet family was travelling to Saskatchewan from Ontario on Wednesday and could not be reached.
jcouture@thestarphoenix.com
© Copyright (c) The Regina Leader-Post
Original source article: Twitter campaign prompts Wall to agree to look into medical treatment for Sask. girl
Saskatchewan Girl Waiting For Help With Rare Disease
Her family is asking for help with the treatment from the provincial government
Reported by Patrick Book
First Posted: Aug 2, 2012 3:26pm | Last Updated: Aug 2, 2012 3:45pm
Violet Revet is a very sick little girl and her family is worried the province isn’t moving quickly enough to help her.
The three year old from Langenburg is one of only nine people in Canada diagnosed with
Mucopolysaccharidosis VI (MPS-VI). The ultra-rare disease has no cure and the longer Revet goes without treatment the shorter her life could be.
“Violet right now without treatment is definitely going to suffer and that’s really devastating for the family,” explained Andrew McFayden in an interview Wednesday from his home in Ontario.
McFayden knows all too well the impact of MPS-VI. His son Isaac was diagnosed with it in 2005. McFayden said the disease ravages the body if left untreated.
“It’s a very devastating condition. Essentially kids that are diagnosed with MPS lack an enzyme in their blood that breaks down all the complex sugars. Because those complex sugars that occur naturally in the body don’t break down they need to find a place to go and so they end up being stored in the bones, tissues, organs, and muscles and it leads to many progressive symptoms: heart and airway disease, progressive stiffening of the joints, corneal clouding, spinal cord compression. Essentially every muscle, tissue, and organ in the body is affected by this disease with the exception of the brain.”
McFayden was told Isaac would only have seven or eight years to live. That was before doctors realized a treatment was making the rounds in the UK and the US, a synthetic enzyme known as naglazyme that acts as a replacement in the body.
Isaac could get access to it under a special access program but the drug wasn’t covered in Ontario. It took McFayden eight months of lobbying before the provincial government there agreed to pay for it and he suspected the delay in Violet’s case is the same as the delay there.
“It’s (up to) a million dollars a year, so I understand that governments have to look closely at this type of thing. Usually what they say they have to look at is the safety of it but it’s already available in the United States, most of the UK…many, many other countries have this. The safety has been proven. Essentially it comes down to dollars and cents and (I believe) that’s why these provinces are delaying.”
Thanks to weekly treatments many of isaac’s symptoms were reversed. It’s given the boy a new lease on life as his family hopes that a cure could one day be found.
Asking for help
After her diagnosis Violet’s family made a request to Saskatchewan’s health ministry for funding so she can get the same treatments. After going more than six months without an answer they went to McFayden for help and he says time is very much of the essence.
“Early detection and early treatment of this conditions is paramount to the future success of children with MPS-VI,” he asserted.
In an effort to spur the government to action McFadyen and supporters of The Isaac Foundation, an advocacy and fund raising group he started to help others with the disease, have been lobbying Premier Brad Wall via the social networking web site Twitter.
On Wednesday the Premier responded, saying they had his attention and revealing that he had directed the Health Ministry to contact the Revet family director. But McFadyen says lip service doesn’t do a sick little girl any favours.
“In Canada we’re supposed to have equal and fair access to health care and right now Violet is not receiving that.”
Tracey Smith is the director of pharmaceutical services for the ministry. She said the delay it is not about the cost of the drug. She denied that any unnecessary delays have happened, insisting the government didn’t get the family’s funding request until July 9th.
“We received the request that day and we have been reviewing the request. We’re working as quickly as possible in order to make a decision and communicate that back to the family.”
She said every funding application goes through a similar review process but she stressed the ministry is looking at the fact that the treatment is already paid for in Ontario, Quebec, and B-C, among other things.
Smith said she’s hopeful a decision will be made in a few weeks but she won’t say what the likelihood of approval is.
McFayden is sorry to hear it; he said work needs to begin as soon as possible because pharmacists and hospital staff that will be working with Revet will need weeks of training before treatments can begin.
Edited by CJME’s Lisa Schick.