Alberta Health Minister Fred Horne has finally sent local MLA Kerry Towle a letter about the funding issue for five-year-old Brooke Aubuchon but it's being tossed aside as “bureaucratic nonsense.”
Aubuchon is stricken with the fatal Batten disease and her financially challenged family desperately needs at least $17,000 funding for additional treatment in the United States, which is unavailable anywhere in Canada.
And Towle, who is the Wildrose Party's MLA for Innisfail/Sylvan Lake, said Horne's long overdue response is unacceptable.
“It is a standard answer. It is a form letter, essentially, and it is his way out of not having to deal with an individual case. It is bureaucratic nonsense,” said Towle, who has been advocating for the family for most of 2013 to get the government to provide financial support. “When we asked those questions in the house he said he would review each case individually and he consistently says at any time or if he would like to meet with me I would do that.
“We have asked him to do that. He hasn't. He is the minister of health,” added Towle. “He has every opportunity to look at this individual case, review it personally and help us get coverage for Brooke, and he is choosing not to do that.”
Since Aubuchon's case was first reported by the Province almost a year ago, the provincial government has steadfastly stuck to its policy of not financially supporting experimental out-of-country procedures.
Horne's Nov. 4 letter to Towle, following repeated questions from the local MLA in the legislature and through earlier letters which did not receive a ministerial reply, outlined various government programs and committees the family could utilize to seek funding to offset the hefty expenses to go to New York City to receive ongoing experimental treatment. Horne said he did not receive two earlier letters Towle said were sent to him this year about the Aubuchon case.
Following extensive community fundraising last winter, Aubuchon and her family were able to go to New York for groundbreaking surgery. While her once deteriorating condition appears to have at least been arrested, the child will still need additional treatment, possibly even radical stem cell transplant treatment.
“I understand there is a thousand committees that they can apply to but why are we making them jump through all the hoops when we know in terms of Brooke's situation she is sort of outside the box?” said Towle. “Her requirements are different than what these parameters of these committees are so she can't get a meeting with the committee because she doesn't meet the criteria.
“If you already know that, this is a specific situation with a specific child in a rare case,” added Towle. “That is what the minister is for, and we are appealing to the minister to actually see this case individually and help us work through the system so she can get covered.”
In the meantime, Towle said she would keep pressuring Horne's office to intervene in the case and pay the necessary expenses to Aubuchon's family.
“We will keep asking him to re-evaluate and meet with Brooke's family. I suspect we won't ever get a meeting, which is terrible,” said Towle. “We will keep hammering on him to cover her. It appears to me this government doesn't have any will to actually take a look at these cases and be compassionate.
“We are saying, ‘Look, if this little girl doesn't have this she dies',” she added. “There has to be some sort of mechanism for the government to be able to do the right thing and make sure a five-year-old doesn't die.”
