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At a recent donation presentation by the Insurance Bureau of Canada (IBC) in Lucknow (ON), Huron Bruce MPP Lisa Thompson also raised the issue of treating rare diseases in Ontario.
"Lyme disease is here in Huron Bruce," said Thompson, "and there is no system to treat it. Like other rare diseases, we have to get the politics out of the way and do the right things for the people who are suffering."
MPP Lisa Thompson
Thompson added that families are being forced to dig into retirement savings just to try and sustain a quality of life.
One such family are the Hessels of South Huron. Rebecca Hessels spoke at the event about her son Cole who has a rare, genetic progressive disease, Atypical hemolytic uremic syndrome (aHUS).
"We are feel so privileged to be living in a province and a country that provides us with first-class health care. Cole has spent most of his life and out of hospital," said Rebecca Hessels. "He had kidney failure and has had an amputation of his left hand and leg and has gone through extensive rehabilitation and surgeries traveling back and forth to London's Children's hospital four days a week."
"We were told early one that there was an orphan drug that could be used but it was not approved by Health Canada."
According to Hessels, her son was to have a kidney transplant but could not unless he was being treated with the unapproved medication. "It was very stressful to have his weekly dialysis. We learned very quickly how to negotiate through the government and drug company maze and Cole was finally, after over two years, given the drug on a compassionate basis."
It has been two years since Cole received a kidney transplant that transformed his life.
"Being diagnosed with a rare disease has its own set of challenges. Accessing treatment and therapy can be a slow process," added Kessels. "There are patients who are not receiving this medication that was approved by Health Canada in 2013. The Ontario government announced interim funding in February of 2015 for patients that met the criteria but negotiations between the Ministry of Health and the drug company broke down just this week. It's very frustrating and disappointing for patients."
The Canadian Organization for Rare Diseases is involved in helping to develop a national strategy for treating rare diseases that could enhance lives more quickly when decisions are not just made for patients in exceptional circumstances but that would be fair for everyone and not on a case-by-case basis.
"Although Cole continues to take his medication every day and receives his drug infusion every other Friday and still has ongoing appointments, he is a very normal nine-year-old living a fulfilled life," says Rebecca Hessels. "He is happy, healthy and thriving and has not had a hospital admission in two years. He is at school full time, plays golf and loves swimming and camping, Cubs and we cherish every day spent together. We are so thankful for our health care
"We have such an amazing ambassador for rare disease right here in our own backyard," says MPP Lisa Thompson, "and as we approach February 29th, let's do what we can to say 'let's support rare diseases right here in Ontario."
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Tuesday, February 23, 2016