County reverses policy, sends boy to Toronto for clinical trial

First, the good news.

The government of Alberta has reversed its decision and will now help pay some of the costs of a potentially lifesaving clinical trial in Toronto for the eight-year-old Ryken Covino [19659002] The following comes with the bad news.

It took months of relentless pressure from the desperate parents of Ryken, Tammy and Nat, along with tireless advocacy by various pediatric oncologists, child cancer agencies and finally the news coverage in the media to get the government to the right thing.

That's wrong. Most Albertans want our taxes to help save the lives of children, not to be swallowed up by an exhausting bureaucracy that denies care to a sick boy.

Alberta Health Minister Sarah Hoffman deserves some credit for eventually doing what should have happened two months ago – when Ryken was healthier – by agreeing to pay for the stay at the Toronto Hospital for sick children for the boy in Edmonton who suffers from a recurrent and now resistant acute lyophoblastic leukemia. He also developed non-Hodgkin's lymphoma.

What that means, since Ryken's first diagnosis of cancer from July 1, 2015, just before his birthday in December 2017 has returned, the traditional chemotherapy treatment has been ineffective. [19659002] A proven treatment – already approved in the United States – called CD-19 CAR T-Cell Therapy is the only thing that can save Ryken's life, says Dr. Child oncologist. Paul Grundy from the Stollery Children's Hospital in Edmonton.

"I am very happy with the news," said Tammy, who was reached on Friday in the hospital.

"I feel greatly relieved," Tammy added to Hoffman's decision on late Thursday, shortly after Postmedia's first column. this case was published.

"I do not have to fight the system for the life of my son anymore, now Ryken can get a chance to be a healthy little boy – cheerful and energetic as he was," said Tammy, "so this is simply the best, happiest news. "

" At the same time I am still pretty angry, "she admitted."

"I received a letter in which I denied Ryken help to take part in a clinical trial in Philadelphia in July. I have a copy of another two-week letter in which we refused cover for the Toronto clinical trial, but now the government is trying to kick back by saying that he was never refused. I have it in black and white on their letterhead that he was refused, "she said about letters she shared with Postmedia to confirm her claim.

CD19 CAR-T Cell Therapy costs about $ 500,000, but those costs are fully picked up by the company that developed this remedy and is conducting the clinical trial in Canada, the only thing that Alberta Health needed to cover was the associated hospital cost of Ryken's stay at Sick Kid's Hospital – estimated at about $ 100,000 to $ 300,000, depending on whether there are complications or not.

Tammy says an "army of great people" supports the family's fight for Ryken, including the advocacy group Ac2orn (advocate for Canadian Oncological Oncological Research Network ), four pediatric oncologists from three provinces, the Alberta Foundation Kids Cancer Care, Miracle Marnie Foundation in Ontario, their member of the Parliament Michael Cooper and members of the United Conservative Party.

"But it took media coverage for them to change their mind," Tammy said. "(The phone calls and the story of Postmedia) must have made (Hoffman) jump, because nothing else has let her jump for months.

" It should not have cost so many people and media attention to make the right thing happen ", Tammy argued. "Our government should help to save the lives of an eight-year-old boy."

Tammy says that other children with similar delays and denials will be affected if the government refuses the legislation that refuses funding for experimental treatments , no change or clinical trials.

"Legislation needs to be changed," Tammy emphasizes. "Failure to support the care of a clinical trial should be changed before this nightmare happens with another family," she said. must be done on a case-by-case basis, not just a "no". When people need access to a clinical trial, they do so because it is their last option. It is not their first. "

On Thursday evening, after the Postmedia column appeared, Hoffman issued a statement saying:" I will inform Ryken's family that, according to Alberta Health's existing policy, he will be included in the process. , all medically necessary costs are covered by reciprocal billing agreements between Ontario and Alberta. "

Ryken had been accepted into the Toronto lawsuit more than a month ago and filed a lawsuit in Philadelphia more than two months ago, when the family and suporters urged the government to make an exception in Ryken & # 39; s case of clinical trials, given the proven efficacy of the treatment and the urgency caused by the deteriorating health of the boy.

Grundy, who spent a lot of time writing letters to the Foreign Health Committee of the province and the Minister of Health on behalf of Ryken, said the "strict line in the sand that the county clinical trials will not be paid by the province, is not the right approach for a whole series of reasons. "

He had turned to the committee, who refused the request to pay the costs of the clinical trial at the hospital, saying:" So the rules would be broken. "The Cabinet of the Minister refused and said that politicians should not interfere in the decisions of the independent commission, even if the rules were made by politicians.

"It was a vicious circular argument," he said. "That should definitely change, because in many of these cases time Of the greatest importance. "

" It is not that they should finance all experimental therapies – not in any way – but especially with cancer in children, where it is unusual and we only have a few children a year in Alberta for whom we do not have effective treatment, but for those children we must be able to participate in clinical trials. "

Tammy says Ryken is once good and life is less hectic and stressful, she hopes she will not have to fight for children like Ryken who need access to these clinical trials.

Here is the hope that the The government is listening, so it will always be good news without reservation in the future.

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