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Tottenham family’s struggle has parallels with COVID crisis: Mom

May 22, 2020   ·   0 Comments

As COVID-19 numbers decline and Ontario embarks on the first stage of its reopening plan, millions are optimistic about a return to normal life.

But this isn’t the reality for everyone. Over 4,000 Canadians live as if there’s a global health crisis every single day.

“It’s so interesting for me to see the world right now because it’s like everyone’s living in our shoes,” said Tottenham’s Sasha Larocque, mother of two boys with cystic fibrosis.

Individuals with cystic fibrosis who can’t access gene modulators become severely ill each time they get a common cold or flu virus and the daily precautions they take to stay safe are strikingly similar to those being enforced by Ontario for COVID-19.

“People have always been able to go to parks, restaurants, or concerts, without even thinking twice about the germs floating around, but we’ve always sort of had to be germaphobes,” Larocque said.

“What people are afraid to experience if they catch COVID-19 is literally what we live every time my kids get sick.

“Imagine catching COVID-19 repeatedly throughout your life; it would do irreversible damage to your lungs.”

As a mother, Larocque said it’s incredibly difficult to watch her children suffer each time they fight off a pathogen or virus.

“My son Andre, when he would get just a cold, oh my goodness he would cough until he couldn’t breath, until we would have to rush him to the emergency room,” she recalled. “They’ve coughed up blood, they’ve done it all, it’s so scary and it’s never ending.”

Over the course of a lifetime, sickness is unavoidable and even with all the precautions Larocque takes to keep her boys safe, they catch colds roughly once every two months, which spread between the two and last for weeks at a time.

After a certain number of lung infections, breathing capacity becomes so limited that cystic fibrosis carriers need a lung transplant to stay alive.

Fortunately, there’s a gene modulating drug called Orkambi that Larocque said is a “borderline cure” for about 50 percent of people suffering from cystic fibrosis in Canada.

In the United States, Germany, Australia, and other developed countries, these drugs are covered by public health or private insurance plans.

However, in Canada, where people take pride in free access to healthcare, the life-changing drugs are being denied to cystic fibrosis carriers who now fall below the global standard of care.

In February of 2019, Ontario’s Ministry of Health (MOH) mandated that cystic fibrosis patients must lose 20 percent of lung function and sustain it for six months to be prescribed Orkambi.

“That’s just where it’s just inhumane in my eyes,” Larocque said. “It’s like waiting for a cancer patient to get to stage four before you start chemo. Imagine there’s a vaccine or cure developed [for COVID-19] and our Ministry says you have to get ‘X’ amount of sickness before we’re going to give it to you.”

Larocque has written several letters to the MOH demanding that the criteria is lifted.

Her son, Joshua, lost 20 percent lung function last winter, and she said it was awful to experience but his doctors helped him regain most of it back since then, making him ineligible for Orkambi.

“CF patients suffer slowly over time and that is why this criteria…does not fit the way our respiratory therapists generally treat the disease,” she reasoned.

Once someone loses 20 percent of lung function and sustains for it six months, the gene modulating drugs will likely have limited impact and a lung transplant is needed to survive.

“These drugs are preventative, like any medicine really, the healthier you are the better it’s going to work, and the better you’re going to be,” Larocque said.

To date zero people in Ontario have qualified for Orkambi since the eligibility criteria was introduced.

The restrictions have caused many people in the cystic fibrosis community to question whether the MOH does in fact want to help those who are suffering. The criteria is currently under review and has been for half a year.

“We’re saying, how long does it take to review a criteria that’s helped zero people? There’s nothing to review,” Larocque said.

She noted that access is being restricted because the cost of Orkambi is set too high but the MOH won’t admit that it’s a factor.

When a new drug comes into Canada, the Patented Medicine Price Review Board sets a ceiling price and Orkambi is over double what’s paid in other countries, at $250,000 a year, per patient.

The Canadian Agency for Drugs and Technology in Health (CADTH) provides recommendations to the MOH on whether a drug should be funded and recommended against Orkambi.

The Pan Canadian Pharmaceutical Alliance (PCPA) negotiates drug prices with the pharmaceutical companies and Vertex, the company behind Orkambi and 30 other gene modulating drugs, has made several offers, such as providing the drug at a 60 percent price reduction.

Earlier this month, Vertex offered to provide gene modulating drugs to all Canadians with cystic fibrosis for 90 days, but the PCPA refused to negotiate a deal.

“That offer was just meant to get us through this COVID-19 pandemic, because obviously the people with CF are really high risk if they do catch COVID-19,” stressed Larocque.

She said the MOH’s restrictions on Orkambi and refusal of Vertex’s offer shows that the health of Ontarians is not the government’s top priority, as they’ve stated several times since COVID-19 hit.

Ontario’s quick response to the virus and precautions they’ve taken to limit its spread are appreciated, but Larocque said she’s flabbergasted by their reluctance to provide “life-changing” drugs to those in need.

“It just blows my mind that it’s over a lung issue, like it’s over the exact same thing as COVID-19,” noted Larocque, who wrote a letter to Premier Ford last month expressing her frustration.

Getting the gene modulating drugs to carriers of cystic fibrosis could be done immediately by removing the loss of lung function criteria, thus increasing their chance of survival during the pandemic, she stressed.

“The provincial government is working very fast to do other great things and that would be a very quick solution, that could be done today if they wanted,” Larocque said. “Heaven forbid a CF patient did catch COVID-19, it’s going to be way less severe if they can access Orkambi.”

By Sam Odrowski
Local Journalism Initiative Reporter


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