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Tottenham family fights for drugs to help brothers with cystic fibrosis

January 28, 2021   ·   0 Comments

For brothers Andre and Joshua Larocque of Tottenham, access to new drugs could provide a huge change in the way they live their lives.

Both Andre, 10, and Joshua, 8, have cystic fibrosis, a serious genetic condition that causes damage to the lungs and other organs.

There are new drugs available that have produced tremendous results for some people suffering from the disorder, however getting access to these new drugs can be difficult.

While Andre has had success with a new drug he has been taking – he has been part of a drug trial for two years – Joshua is hoping to receive a drug called Orkambi which could greatly improve his condition.

Orkambi has been approved in Canada; however, getting the drug here is a different story.

The Provincial government is still negotiating with the drug manufacturer, Vertex Pharmaceuticals, over the cost to bring the drug into Canada.

Not all drugs work for all cystic fibrosis patients. Rather, some drugs will work well with some patients based on the type of condition they have. Orkambi can be used to treat around 50 per cent of people with the condition.

In Joshua’s case, Orkambi could be a life changer.

Over 20 countries have already approved Orkambi and are using it to help those suffering with cystic fibrosis.

“It (Orkambi) has been approved in the States and it has been approved by Health Canada,” explained the boy’s mom, Sasha Haughian. “All our government has to do now is negotiate a price for this drug.”

Ms. Haughian and other CF supporters have been trying to put pressure on the government to get this deal done.

“Even to get our province and health minsters to want to negotiate for this drug has been a painful process,” Ms. Haughian said. “At first they just said ‘no.’ We advocated and advocated and they finally said ‘okay, we’re going to negotiate for this drug.’ Now they’ve been in negotiations for several months and nothing has happened and still nobody can access this drug. When we reach out to the Health Minister they just give us these generic responses.”

Ms. Haughian said these drugs can correct the “dysfunctional gene at the cellular level.”

While previous drugs can treat the symptoms of cystic fibrosis, the new drugs can target cellular defects so they never start.

The government has said they will fund the drug for some patients, but the must meet certain criteria, which Ms. Haughian said is very frustrating.

“The said they will fund it for patients if they drop 20 per cent of their lung function within a six-month period. Basically, you would have to be really, really sick to qualify for funding. I compare it to waiting for a person to go on a ventilator before you give them the COVID vaccine or waiting for a person to reach stage 4 cancer before you treat them with chemo. Especially when these drugs are made to prevent this in the first place.”

Ms. Haughian and her husband have met with Ontario Health Minister Christine Elliot, who was sympathetic to their cause and others with cystic fibrosis in the province. However, so far there has been no change in status of getting the drug to patients.

She compared the struggle to people waiting for the drug to those waiting for the COVID vaccine – with one difference.

“Just like the COVID-19 vaccine, people are waiting for the vaccine – we’re waiting for this pill. The only difference is Orkambi has been available since 2016.”

By Brian Lockhart
Local Journalism Initiative Reporter

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