Months of stifling provincial government bureaucracy is causing wrongful hardship and stress for the family of Innisfail's Batten disease child Brooke Aubuchon, says Alberta's Opposition Wildrose Party.
“What is unacceptable is having a system where you have the government making 100 per cent of the rules and having 100 per cent of the control over what services are provided and they refuse to either provide the service or to provide help to receive the service,” said party leader Danielle Smith who made a stop in Innisfail last week to attend a Rotary Club luncheon. “I think the government is erring in how they are treating this case and there are others who have fallen in the same situation.”
Smith said government rules and regulations have to change when determining whether an Albertan should receive financial support to receive medical treatment outside of their jurisdiction.
“We clearly believe that the only way to be able to get this system performing better is to give multiple options to patients,” said Smith. “It has got to be a patient-centred system. It is not right now, and to deny people coverage and care is not an option.”
Matthew Grant, press secretary in the ministry of health, said Fred Horne, minister of health and wellness, was in eastern Canada last week and was unavailable to immediately comment on Smith's statements. Grant said he needed to verify the details of the Innisfail family's history in seeking support from the health ministry before commenting. Yesterday, he said he was still working on the file and could not comment at this time.
Five-year-old Aubuchon's disease is a fatal condition of the nervous system that causes blindness, mental impairment and progressive loss of motor skills and ultimately death. Batten disease already claimed Aubuchon's eight-year-old brother Alexander on Sept. 20, 2011. Repeated requests to the provincial government for financial help to go to the United States for life-saving treatment have been denied. The family has been forced to depend on community generosity. However, those monies will soon run out and the child will require further expensive long-term out-of-country experimental stem cell treatment to reverse damage already done by the disease.
Since last spring, Kerry Towle, the Wildrose MLA for Innisfail/Sylvan Lake, has persistently pressed Horne in the legislature and through multiple correspondence to have the government pay $17,000 in travelling expenses for Aubuchon to take experimental treatment in New York City. She said three letters were sent to Horne's office but no satisfactory response was returned.
“The problem with the AHS bureaucracy is that it is so big. Trying to get an answer from anyone in the bureaucracy is almost impossible,” said Towle, noting the child's family was denied funding by one ministry committee and not allowed to apply to another.
Officials with Horne's ministry have previously told the Province it's the Alberta government's policy not to fund medical services that are experimental.
Aubuchon did go to New York City in February for a clinical trial but it was financed through tens of thousands of dollars of donations from community citizens. The child's deteriorating condition appears to have been arrested but her fight to survive is far from over.
“We put that to the minister and we asked why he wouldn't cover her travel expenses. They were minor, under $20,000, and they are a low-income family,” said Towle. “His response was that there was a committee that looks at this and she doesn't meet the criteria of the committee.”
Towle, who has met with Aubuchon and her family several times before and after her February treatment, said attempts to have Horne cut through the bureaucracy have been unsuccessful.
“They have multiple trips ahead of them. This is going to be an ongoing issue,” said Towle. “And the reality of it is that they are not asking for very much money.”
Towle said her next step is to continue to press Horne in the upcoming fall session of the legislature and to talk to Janet Davidson, the health ministry's new deputy minister.
Meanwhile, Aubuchon's mother Robin Brand said her daughter was in New York City last month for further testing but the prognosis was inconclusive.
“They are still running tests,” said Brand, adding it could take up to two years before doctors can accurately say whether Brooke's condition is in remission. “She hasn't gone downhill. She has been quite stable.”
Brand said her daughter will return to New York City in March. She said the family has enough money to cover that expense but it could run out soon after.
“All I have is hope. We are hoping for good news,” said Brand.
