Desperate for a hip replacement, this 25-year-old gave up on Quebec's public system to get her life back

Jaya-Lilas Payette used to manage her juvenile arthritis with medication but about a year ago, the drugs stopped being effective.

Payette's arthritis had progressed to osteoarthritis and last fall, her routine X-rays showed her hip bones had deteriorated much faster than expected.

"We saw the bones of my hips were totally crushed together," said Payette.

The 25-year-old used to work in a busy Montreal cafe, but the physical demands became overwhelming.

At the end of the day, she says she'd fall into bed from sheer exhaustion and pain.

"I wasn't even able to make meals or do my chores because I really had to go to bed after work so I could wake up and do the same thing over again," said Payette.

She was referred to an orthopedic specialist in November and told it could take up to three months to get an appointment. But she still hasn't received a consultation.

"I call every week, crying, almost screaming because I can't endure the pain anymore," said Payette. "I'm not even on the list yet in the public system."

Unable to work since last fall, Payette has become increasingly housebound.

Her mobility has deteriorated so much she has to move around her third-floor apartment with the help of a walker and relies on her family to run errands and do housework.

"Her social life has been very affected and I'm afraid for her mental health too, because being in bed all the time like that is not what a person her age should be living right now," said Payette's mother, ve Le Bourdais.

Desperate, Payette's family called a private clinic and got a consultation with a surgeon the following day.

"He said, 'So, when are we doing the surgery, because it's urgent," said Payette, who needs both hips replaced.

It will cost $35,000 for the surgery.

Payette's family can't afford that, so they are trying to raise the money through a GoFundMe campaign.

"The pain is too awful and I want to have my freedom again," said Payette.

Turning to the private sector

Payette's dire situation isn't unusual, experts say.

"That shouldn't happen, but that's where we are now," said Dr. Vronique Godbout, president of Quebec's Orthopedic Association.

In the past, private surgery tended to be reserved for people who had the financial means to opt for it, but now, it is not unusual for people to remortgage their homes or use their retirement savings to pay for a surgery because they can't wait any longer in the public system, said Godbout.

WATCH | Jaya-Lilas Payette explains what drove her to a private orthopedic surgeon:

25-year-old Montreal woman was so desperate for hip replacement, she sought private surgeon

6 months ago

Duration 1:33

Jaya-Lilas Payette has lived with juvenile arthritis for years but it has progressed to osteoarthritis and now both hips need to be replaced. She hasn't even been able to see a public doctor but got an appointment with a private surgeon within a day.

Other provinces are grappling with similar challenges, which has raised concerns about a two-tier system.

Increased demand in the private sector means more surgeons are working in both the public and private system.

"It used to be very rare, very occasional," said Godbout.

She doesn't have official numbersbut estimates up to 10 Quebec surgeons have completely switched to private practice for good in the last few years.

"So again, that number just keeps increasing because the demand is there," said Godbout.

Nearly 20,000 people waiting

According to the Health Ministry, 19,836 peoplewerewaiting for a hip or knee replacement in Quebec as of the latest figures available on Jan. 27.

Of those patients, 8,822 had waited six months or more for surgery.

The ministry hopes to bring the list back to pre-pandemic levels by the end of this year.

In 2019-2020, the number of Quebecers waiting for those same surgerieswas 9,258. Nearly 20 per cent had waited six months or more.

Hospitals try to prioritize patients who have waited more than six months for a joint replacement.

Patients may also be offered the option of having the surgery performed by another surgeon or at a different hospital in another region that has a shorter wait list.

But in reality, Godbout says very few patients choose this.

"Most of the time they want to stay with the surgeon they met with and they have confidence in," said Godbout.

Although some hospitals have agreements with private clinics to perform more minor day surgeries, it's not enough, said Godbout.

To catch up, she believes hospitals need to speed up the number of surgeries performed,which is challenging due to limited operating time and staffing.

Godbout said it will take a real commitment from the government to turn things around.

"I think as long as they don't commit to really develop their human resources in health care, it's not going to happen," said Godbout.

Liberal Health Critic Andr Fortin says it's not surprising some Quebecers have been forced to get creative rather than watch their health deteriorate.

"If government is not there to offer people that basic service, a lot of people will try to find options on their own. And unfortunately that means paying out of pocket. And that means that they're paying twice. They're paying through their taxes and they're paying a doctor in the private sector," he said.

Fortin says Quebecers deserve timely care.

He'd like to see more public operating rooms opened up to help reduce the surgical wait list.

Limited orthopedic operating time in hospitals

Dr. Adam Hart started to work in both the public and private sector at the peak of the COVID-19 pandemic a few years ago.

"It was out of pure frustration," said Hart, an orthopedic surgeon at both the Montreal General and Ortho Westmount, a private clinic.

While he understood cancer and trauma surgeries took precedence over elective hip and knee replacements, it was hard to accept.

"People don't realize how debilitating it can be when you can't put your shoes on or you have trouble getting in and out of a car or just walking up a flight of stairs," said Hart, who also happens to be Payette's surgeon.

In the public system, Hart said he's limited to one or two days of surgery a week and even then, his operating times are regularly cancelled because of a lack of staff.

The delay has created two waiting lists for him:one just for a consultation and another for the surgery itself.

"If I saw all my consults in my inbox, then my wait list would be multiple years long. So I limit the number of new consults that I see," said Hart.

Once he sees a patient, his surgery wait list on the public side is about 400 days long.

Although he initially had mixed feelings about patients paying for surgery, he saw how happy they were to be able to regain their independence and move on with their lives.

"It's not for everyone, but it gives some patients the opportunity to go and have their surgery right away and then of course, make space for another patient to have it done on the public system," said Hart.

Deciding to crowdfund

Choosing a GoFundMe to pay for her surgery was a big step, but Payette said she no longer feels powerless.

Her surgery is scheduled in April and she's anxious to get her life back on track.

"Especially at my age, I feel like I should be able to do stuff," said Payette.

Her mother says she isn't sure the government appreciates the toll it takes on both patients and their families when the public waiting list is so long.

"It's been a lot of stress for us alot of tears too," said Le Bourdais, who has travelled from her home in the Eastern Townships to Montreal at least once a week to help her daughter.

Since Payette can't work, her mother is also paying her rent.

Le Bourdais wishes the province was more transparent about how the waiting list works in the public sector and how patients are prioritized.

"How come a young woman like Jayawho's 25 and has a long life ahead of her is suffering to the point that she has to be in bed most hours of the day?" said Le Bourdais.