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Alex Nickel is a 9-year-old boy from Rosetown who was diagnosed with cystic fibrosis (CF) in 2009.
Cystic fibrosis is an inherited condition that causes severe damage to the lungs, digestive system and kidney. other organs. the body. According to Cystic Fibrosis Canada, cystic fibrosis is the most common fatal genetic disease among Canadian youth and young adults. There is currently no treatment.
Alex's lung capacity over the past year has deteriorated faster than the average person with CF. In May of this year, despite a high dose of antibiotics during his regular visits to the hospital, Alex's lung function was at its lowest level, 59%.
"Unfortunately, Alex did not react to any of the antibiotics they used," said Alex's mother, Jenae Nickel. "His baseline lung function last September dropped by 8 percent, and the average person with cystic fibrosis would lose 1 to 2 percent a year."
Alex Nickel during his last visit to the hospital in May
Genetic disease occurs when a child inherits two defective copies of the gene responsible for CF, one from each parent. About one in 25 Canadians carries a defective copy of the cystic fibrosis gene, even though carriers do not have cystic fibrosis and have none of the badociated symptoms. When two CF gene carriers have a child, there is a 25% chance that the child will be born with cystic fibrosis.
"The average in Canada is about one in 3,200 children born with cystic fibrosis," Janae said. "Cystic fibrosis is a very personalized disease: a person with cystic fibrosis may not look like the next person with cystic fibrosis: 20-year-old adults are waiting for a transplant (lung) and there are people in the years 50 who never have It seems that it varies from one person to the other and unfortunately Alex seems to be the one that his illness is going on in a way that we hoped it would not would not be. "
For Alex, illness means that he can not enjoy all the activities that he would normally have as a child.
" Having such a complex medical life is hurting him, " said Jenae, "He can not do things like a normal child, it is harder for him to follow his peers, you have to be very careful not to catch the infections, but the hardest thing for Alex is to … to hear what the future holds for him, he arrives at the age when he begins to understand what cystic fibrosis will be like in adulthood and he understands that his illness is not going like his doctors the would like to see him as a family, but everyone could not see at the pool or on the football fields. "
Somehow through all this, Alex managed to keep a positive attitude "
" Alex is extremely resilient and very optimistic, "said Janae. rs the positive side of things. "
Alex Janae's mother said that it is likely that Alex will have to return to the hospital this summer
There is a fairly new drug that helps slow down the effects of cystic fibrosis, but the only problem is the cost. Orkambi is a medication that works by correcting a mutated gene in patients with cystic fibrosis. It essentially supports the break on the disease and allows the relief of deterioration in the lungs and other organs. It was approved for use by Health Canada two years ago, although the Government of Saskatchewan does not cover the cost of the drug. The estimated cost to receive the drug is $ 250,000 per year
. After his last visit to the hospital, Alex's doctor wrote a letter to the Saskatchewan government asking them to consider funding the drug for Alex. Last Thursday, Janae received a letter from the Saskatchewan government saying that funding was once again denied.
"So, no matter how sick he gets," Janae said. "The government does not want to make an exception for him or for other people with CF. Time is running out for them, Alex waits every month without this drug, his lung function worsens and it may not be reversible.
Janae says that there is still hope that the province will cover the drug. She added that the Canadian Agency for Drugs and Technologies in Health (CADTH) and the provinces would look at the price of the drug.
"Cystic Fibrosis Canada has released information that it is hoped that a recommendation will be made in early August," Janae said. "This is not a cure, but it's the closest thing we have to do with the drug for the cause, instead of just trying to treat the symptoms."
She noted that the drug would be very expensive for the province, but the treatment that Alex currently receives each year is only used to try to maintain its current state.
"What we really need," Janae said. "It is the responsibility of the provinces to put the health of our children first and to negotiate a price so that Canadians who need it can get it."
Alex and his mother Janae Nickel
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