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Family of Ontario brothers with Cystic Fibrosis fight for province’s help to access vital drugs

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WATCH ABOVE: The parents of a pair of brothers in Ontario with cystic fibrosis are demanding access to a life-saving drug for their younger son. As Caryn Lieberman reports, while there is progress, it is slow and time is of the essence – Jan 19, 2021

For Canadians with Cystic Fibrosis (CF), there may be a tiny silver lining to the COVID-19 pandemic.

“All of the heightened awareness about sanitization has actually helped prevent those common colds and viruses that generally bring Joshua down so this past year has actually been just a pleasant relief on his lungs that are usually stressed out,” explained Sasha Haughian, of Tottenham, Ont.

Haughian’s two sons, Andre and Joshua Larocque, were both born with Cystic Fibrosis, a serious genetic condition that causes severe damage to the lungs, digestive system and other organs.

The family has been living a “COVID-19-lockdown lifestyle” for years, she explained, in order to keep the boys as healthy as possible.

Read more: CF patients await access to ‘game-changing’ drug Trikafta as it moves closer to approval

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“Every CF mom has bottles of hand sanitizer and Lysol wipes in their purse, we all have weird rules about who can come into our home and if you’re sick you don’t come into our home because any common cold or virus basically does the same thing to a CF patient that COVID-19 would to anyone — it makes them very sick,” she said.

Only one of Haughian’s sons has access to a potentially life-saving drug.

“Andre is doing really well. He’s been part of a drug trial for just over two years now,” she said.

“It was just a miracle and it changed our life.”

Read more: ‘Now’s the time’: Cystic fibrosis community calls for Canada to fast-track ‘miracle’ drug

Haughian said seeing the changes in her older son is what is fueling her fight for her younger son to have equal, quicker access to CF drugs.

“That’s why I’m so passionate about these drugs because I’ve seen firsthand the amazing things they can do,” she said.

According to Cystic Fibrosis Canada, there are about 4,300 Canadian children, adolescents, and adults with cystic fibrosis.

There are four drugs available, called cystic fibrosis transmembrane conductance regulators or CFTR modulators. There are Kalydeco, Orkambi, Symdeko and Trikafta.

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Read more: Trikafta, cystic fibrosis ‘miracle drug’, one step closer to being approved in Canada

“Each of the four drugs is in different stages of this Canadian review process,” explained Haughia.

“The key thing about Joshua and Orkambi is that is the one drug he can qualify for and Orkambi has been through every single review process necessary to be funded and to be in the hands of a patient.”

But there is a hitch.

“Our government has slapped these criteria on it that requires a child to lose over 20 per cent of their lung function within a six-month period of time before they can qualify for this drug, so in layman’s terms our government is requiring my son to get very severely sick before they’re willing to give him access to this drug,” said Haughian.

It is an impossible situation for the mother of two sons who are battling the same progressive, fatal disease.

Read more: Canadians demand access to ‘miracle’ cystic fibrosis drug already approved in U.S. and U.K.

“I would compare it to requiring a patient to be vented before they give them the COVID-19 vaccine. What good would that do? Or waiting for a cancer patient to reach stage four cancer before they offer them chemo?” she said.

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“There’s absolutely no rhyme or reason to make a child with cystic fibrosis get that sick before you give them a medication that is meant to prevent that sickness in the first place.”

Chris Macleod, national chair of the Canadian Cystic Fibrosis Treatment Society, said he agrees with Haughian.

“This isn’t unwalked territory — 20 other countries have approved Orkambi, the FDA fast-tracked it so it’s not as though we’re looking at novel, innovative research that has never had eyes on it before,” said Macleod, who is living with CF and advocates for patients with the disease to have access to any medication their doctor prescribes.

He said he would like to see a portfolio deal negotiated at the provincial level to encompass all the CF drugs.

Read more: Saskatoon family waiting for access to cystic fibrosis treatments

“Negotiate one low price for all the gene modulators, whether it’s Kalydeko, Trikafta, Orkambi and any other future drugs that come in,” he said.

“Whichever drug works put the people on it and we’re only asking the government to cover those individuals who do not have a group benefits plan through work.”

Macleod, like Haughian, said it is time for Ontario to drop the prescribing criteria for Orkambi.

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“I don’t think anybody in the province is even on the drug because of the criteria,” he said.

Global News reached out to the Ontario Ministry of Health to inquire about the process to approve the drug and whether the prescribing criteria for Orkambi would be removed. A statement was sent by a spokesperson for the ministry in response.

Read more: Ontario brothers fight Cystic Fibrosis, family pleads for equal access to drug treatment

“The pan-Canadian Pharmaceutical Alliance (PCPA) has been engaged in active negotiation with Vertex Pharmaceuticals since June 12, 2020 for Orkambi and Kalydeco,” the statement said.

“A major consideration of these negotiations is a request from the pCPA that Vertex submit Trikafta to Health Canada and if approved, to then submit it for a Health Technology Assessment (HTA).”

The ministry spokesperson advised that details regarding ongoing discussions and negotiations are ‘strictly confidential,’ and that “this is a complex negotiation involving multiple drugs. All negotiating parties play an important role in reaching agreement and achieving timely outcomes.”

Sasha Haughian is relieved her older son is doing well and her younger son has had a good year, which she attributes to COVID-19 measures in place across Ontario. But the reality is not lost on her.

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Read more: Cystic fibrosis cases in Saskatchewan on the rise, according to new report

“I’m not naive. This isn’t going to last forever… it’s just so heartbreaking watching these other countries reaping the benefits and the newfound health of these CF patients on these drugs,” she said.

“I know that Christine Elliott is a mother. I know she’s a human being. And I don’t like having to attack her and attack her government but I don’t know what else to do to get this into the hands of my son,” she said.

Haughian drew a parallel from the drug that could help her son Joshua to the vaccine for COVID-19 currently being administered to healthcare workers in Ontario.

“Just like the (COVID-19) vaccine, people are waiting for the vaccine. We’re waiting for this pill,” she said, noting the only difference is that “Orkambi has been available since 2016.”