‘They have failed us.’ Parents of kids with rare diseases feel let down by Ford government

Posted on February 27, 2020 in Health Delivery System

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TheStar.com – Provincial Politics

Families needing revolutionary and expensive drugs to beat the symptoms of rare diseases like cystic fibrosis say Health Minister Christine Elliott has let them down after championing improved access to medications when the PCs were in opposition just a few years ago.

“We did have lots of hope,” Jamie Larocque, a father of two Tottenham boys with the debilitating lung disease that can lead to the need for a lung transplant, said Wednesday. “They have failed us.”

One of the boys was coughing non-stop and hacking up blood with a recent cold because he does not yet qualify for a cystic fibrosis drug called Orkambi that targets his genetic variant of the illness.

Independent MPP Jim Wilson (Simcoe-Grey), a former Progressive Conservative health minister, raised the long-standing issue after bringing more than a dozen parents and children with cystic fibrosis to the legislature to press their case.

He noted many of the drugs sought by cystic fibrosis patients have already been approved in countries including Ireland, Italy, Germany, France and England. Many Ontarians needing them do not have private coverage and some rely on public fundraising.

Elliott said she has been trying to speed the federal and provincial approval processes for the drugs and to get them covered in Ontario.

“I’m frustrated as well that we can’t deal with this more quickly,” added Elliott, who repeatedly brought patients to Queens’ Park and criticized the previous Liberal government for not moving faster on the file when she was PC health critic.

“The reality is that as more and more of these new medications come into the market — which is wonderful because they are life-changing and in some cases life-saving for people — we want to make sure that we are going to be able to afford them.”

In 2014, Elliott said “we have to be able to find the money” to pay for such drugs by restructuring the health-care system.

Some of the drugs costs hundreds of thousands of dollars a year per person. There are 1,500 people with cystic fibrosis in Ontario.

Larocque, a crane operator, told how his two boys aged 7 and 9 fared with colds recently — with the older one on an experimental drug called Symdeko aimed at his specific variant of cystic fibrosis through a trial at the Hospital for Sick Children shaking off the bug quickly.

“These are preventative medicines that are meant to sustain your health.”

Wilson said the province ended up covering another cystic fibrosis drug, Kaleydeco, in 2014 after patients fought for years and it’s inevitable other similar medications attacking genetic variants will end up getting wider use as well.

“Why put these patients through daily suffering?” Wilson said, accusing Elliott of “hiding behind the process” of funding.

“I’m sure dollars are a part of the equation but in the overall scheme of things you’re going to spend far much more money on lung transplants and hospitalizations.”Green Leader Mike Schreiner said a total revamping of Ontario’s drug strategy is needed so patients in desperate need don’t have to come “begging” to the government.

“It makes absolutely no sense to wait to provide access until somebody’s health deteriorates. It negatively affects quality of life but secondly it puts pressure on the health-care system and costs more.”

Rob Ferguson is a Toronto-based reporter covering Ontario politics. Follow him on Twitter: @robferguson1

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