Wildrose calls on province to help teen with rare disease
Posted Oct 21, 2016 9:22 pm.
This article is more than 5 years old.
The Wildrose party is calling on the government to fund a life-saving treatment for a High River teen.
17-year-old Hayley has been diagnosed with an extremely rare condition that causes inflammation.
Hayley’s mother Brenda says if her daughter gets the drug, called Soliris, she needs it could save her kidneys.
“Everyone is shocked and you know she looks like a very healthy young lady, and then to find out that her kidneys will eventually fail her unless we find something to slow the process or stop the process it’s very frustrating,” says Brenda.
Brenda admits it’s been difficult watching her child get sick and then be refused a drug that could save her life.
“We have applied to Alberta short-term exceptional drug therapy program where we were denied and I feel that it isn’t set-up to deal with these rare diseases. So we’re hoping the government can revise that program.”
A spokesperson for the Minister of Health says in this case, there is minimal evidence about this treatment, and it is still considered highly experimental.
A full year of treatment would run a bill of about $700,000.
“It’s really disappointing, we’re told that we have universal healthcare system in Canada to make sure that no one is bankrupted by an illness or an injury and if healthcare doesn’t exist to keep a 17-year-old alive and well then why do we have it.”
Soliris has been approved for use by Health Canada, along with the United States and Europe.
