Beeton Girl Helping Homeless

Posted on 2013-11-30 by admin

Brad Pritchard – Simcoe News

BEETON –  Nov 28, 2013 – For her 12th birthday party this weekend, gifts are the last thing on Madi Vanstone’s mind. The Beeton girl has decided to use the day to help out the Barrie Out of the Cold program as a way to say thanks for all the support that’s allowed her to live a better life. Madi’s mom Beth Vanstone said her daughter’s cystic fibrosis symptoms have nearly disappeared since she started a new type of medication in August called Kalydeco.

“She’s doing phenomenal, after 30 days on the medication she tested negative for cystic fibrosis because it opened the channel in her body that creates all these issues,” she said.
Beth said she has a lot more energy now and is performing much better at school. She also no longer suffers from daily headaches and stomachaches.

“It’s not even a question if will it work, it’s changing her whole life,” she said. There would have been no way for her family to afford the expensive drugs without the support they’ve received from the community in recent months. Since the summer there have been several fundraisers to help the family purchase the medication not currently funded by the province. The most recent fundraiser was held this past weekend at the Club at Bond Head, bringing in $21,000 for the Vanstone family.

“We’ve got about six or seven months worth of medication saved in the bank for her,” Beth said. Now that her daughter is in a position to give back, she decided to use her party to help others in need by collecting food donations in place of presents. Madi and her friends will also bake up a batch of Christmas cookies for the shelter to help spread more holiday cheer.

“Madi has been a recipient of a lot of love from our community, so she wanted to give back and thought that might be place that doesn’t get a lot of attention,” Beth said.
While Madi is making great progress, not much has advanced on the political front to get the treatment funded. “We’re still working really hard to get the government to take responsibility for this,” she said. Beth plans to a join a group heading to Queen’s Park next month to ask support from the health minister. The group will include Milton resident Kimm Fletcher, who made the news last month after the province refused to fund brain cancer medication that could potentially extend her life.

Beth is also planning to make a deputation to gain New Tecumseth council’s support to ask the province to fund Kalydeco.

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Nothing to Celebrate

Posted on 2013-11-30 by admin

One Year Anniversary of Canadian Approval for KALYDECO Goes by Without Public Access

TORONTO – Canadians with cystic Fibrosis (CF) have been living with unequal access to treatment for a full year now as KALYDECO a life-saving treatment for this disease celebrates its one year anniversary of approval by Health Canada without wide spread public drug plan coverage. Some Canadians have been lucky enough to receive this medication through their private insurance, but others continue to wait for their provincial governments to provide coverage while their lung function deteriorates day by day. The longer that access to KALYDECO is denied to Canadian patients, the longer we support a two-tier system where only those with private insurance can gain access to this life saving treatment.

“All we are asking for is an equal chance for all cystic fibrosis patients to get access to the treatment they need” said Christopher MacLeod, Chair of the Canadian Cystic Fibrosis Treatment Council and a CF patient who is receiving KALYDECO through his private insurance. “Public coverage for KALYDECO in Canada has been stalled for too long now, and for many patients access delayed is access denied.”

There are over 100 Canadians suffering from Cystic Fibrosis in Canada for whom KALYDECO may be the only alternative to an eventual transplant. The mean age of those killed by this disease is 22. The Canadian Cystic Fibrosis Treatment Council is calling on provincial governments to step up and provide public coverage for KALYDECO before it is too late for those who need it. At this time the drug is only available through private insurers, or through Quebec’s Special Access Program.

“This is a treatment that has revolutionized the way in which Cystic Fibrosis care will be delivered, it’s a game changer in the fight against CF,” said Dr. Kieran McIntyre, doctor of Respirology and Cystic Fibrosis at St. Michael’s Hospital. “I have patients that need this medication but without private insurance will not be fortunate enough to begin therapy. We cannot continue to have patients who are excluded from the care they need.”

Canadians with CF have nothing to celebrate until provincial governments decide that a two tier system for drug access is not acceptable and that Canadians should not be denied life-saving medication solely because they do not have private insurance.

“I spent three of the six months before I started taking KALYDECO in hospital,” said Chris. “I’ve been on the drug for a year now and haven’t spent a single day of that in hospital. I’m one of the lucky ones, but there are many people out there who do not share my good fortune. I will not rest until there is equal access for all CF suffers. “

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Media Contact:

Chris MacLeod

Chair of the Canadian Cystic Fibrosis Treatment Council

647-381-4902

cmacleod@cambridgellp.com

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Access To KALYDECO™

Posted on 2013-11-29 by admin

The Cystic Fibrosis gene was discovered in Canada in 1989 at the Hospital for Sick Children. Now, some 20 years later, we have the first medicine to result from that discovery: KALYDECO™. Also known by its generic name, ivacaftor, it is the first medicine to treat CF at the genetic level. Taken twice a day in pill-form, it allows the defective gene to act more normally, allowing the lungs to remain free of mucus and thus discouraging the colonization of harmful bacteria there.

KALYDECO™ was approved for use in Canada by Health Canada in November 2012 for people with CF aged six and older who have at least one copy of the G551D mutation in the CF gene. There are over 1,800 known mutations of the CF gene — the G551D mutation is just one of them and present in approximately 4% of Canadians affected by Cystic Fibrosis. And while there are roughly 100 people in Canada with the G551D mutation, at the present time there are only about 20 of them that fortunate enough to have access to this remarkably effective drug because of their private insurance plans. The remaining 80 patients are waiting and hoping for public funding.

This two-tier system is unfair and – in our opinion – un-Canadian! Countries such as England, Scotland, Wales, the Republic of Ireland and Northern Ireland have all found ways to publicly fund KALYDECO™, and Canada needs to do the same. It is simply unacceptable that KALYDECO™, the first medicine to work at the genetic level, is not covered by our governments while it is available to thousands of patients in other countries, and it is available to Canadian patients who have private drug plans.

If you would like to  advocate for public funding for KALYDECO™, you can start by contacting your local Member of Provincial Parliament or Member of Legislative Assembly. They can than influence the people at Alberta Health who are leading the Pan-Canadian Pricing Alliance in the review of KALYDECO™ to act quickly to recommend that all provinces and territories publicly fund this break-through medication.

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