LETTER: Mother of local CF Warrior Madi Vanstone requesting help from the community in fight for access to orphan drugs – BradfordToday

A letter from local resident Beth Vanstone, the mother of Cystic Fibrosispatient and warrior, Madi Vanstone:

When Madi was diagnosed with Cystic Fibrosis at eightmonths old it felt like our world had just crumbled around us.

Gone were out thoughts of raising our two little girls and looking forward to what ever lay ahead of them. Careers, families travel, growing old and living happy were shadowed by keeping Madi alive . Cystic Fibrosis stole those dreams from us and replaced them with countless hospital admissions, physio multiple times a day, bags full of medications and a very scary and tumultuous future.

As parents will do, we took the challenge put to us and did everything we could to provide Madi with the best life we could. We made fabulous memories and packed in lots of fun each day when she was well enough. While we focused on raising our girls we also jumped into fundraising for CF and research hoping against hope that one day there would be a cure and a future for our little girl.

Well after 11 years, as Madi's health was declining rapidly, we were given hope in the form of two little blue pills. Kalydeco the first gene modulator was here and it was going to save our daughter. Well, it wasn't quite as easy as that, there was our very public two year battle for drug funding, but that's another story. Fast forward sevenyears and Madi's life and our lives have been transformed. Two pills a day have taken Madi who was slowly drowning daily in her Cystic Fibrosis, to a healthy and happy young woman who is looking forward to a beautiful and bright future. These two little blue pills taken twice a day correct the defect in the gene that causes Cystic Fibrosis. Tested today while on her medication she tests NEGATIVE for the disease.

Kalydeco was the first of a new generation of gene modulators and sadly only effective in a very small percentage of patients. The fourth generation and by far the best of the modulators is here, Trikafta is saving lives around the world every day. Patients at the end stage of their disease are coming out of their hospital beds and living again, going back to work, looking forward to exciting futures they thought they would never see! Sadly Canada has made some very deadly changes to regulations that pharmaceutical companies must comply with. These changes are literally killing patients and they prevent lifesaving drugs from being submitted to Canada.

CF families are begging for Canadians to stand with them as they respond to these changes, so they will not have to watch their children die as the drug that will save them sits outside our borders. We have made a VERY simple form for you to complete and stand with us to let government know Canadians deserve better. I urge you to please take the two minutes to complete and urge your friends and family to complete as well. We are hoping to get 4,400 submissions, one for each CF patient in Canada. Letters for Lives will save lives.

Please consider writing a letter to thePatented Medicine Price Review Board, using the following template here.

Thank you,

Beth Vanstone, Beeton

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LETTER: Mother of local CF Warrior Madi Vanstone requesting help from the community in fight for access to orphan drugs - BradfordToday