Prince George grandmother Val Mowatt, who lost two of her sisters to the same genetic disease she was diagnosed with in October, has been told she needs a liver transplant to survive.
One of her daughters is a potential match and is willing to be a live donor to help save her mother’s life, but the family has come up against bureaucratic red tape in getting approval to have the surgery done in Edmonton and ensure it is funded by the provincial government.
Mowatt, a 60-year-old mother of four and grandmother of seven, is scared she will meet the same fate as her two sisters, who both died while waiting on the B.C. Transplant waiting list.
Out-of-province organ transplants are paid for through Medical Services Plan, but Mowatt has been told she must go be on the B.C. Transplant waitlist first, despite no one in B.C. performing live-donor liver transplants.
The trouble is she also needs to be on the waitlist in Alberta and patients cannot be on two waiting lists in different provinces at the same time. So her physician has to refer her to B.C. Transplant, which she has been told could take two months before she is even approved to be on the B.C. waitlist. Then B.C. Transplant would have to refer her to Alberta.
It’s a lengthy process and she’s running out of time, with her physician estimating about three months until her liver fails.
Mowatt has written a letter to Health Minister Adrian Dix requesting confirmation from B.C. to have the surgery paid for in Edmonton so she can go straight on the Alberta waitlist, but she has not received a response.
A live-donor liver transplant is a procedure performed by a surgeon to remove a portion of the liver from a healthy person and place it into someone whose liver is failing.
The liver transplant centre for B.C. is at Vancouver General Hospital, but the surgeons there only perform deceased liver transplants. Mowatt feels her only chance of survival is to go to Edmonton.
In an interview Saturday, Mowatt was overcome with emotion as she explained how she has already lost two sisters to primary biliary cirrhosis, the same genetic disease that she was diagnosed with in October.
Primary biliary cirrhosis is a chronic disease in which the bile ducts in the liver are slowly destroyed.
Mowatt worked for more than 35 years as a paralegal and wants it known that she has never been a heavy drinker or taken drugs and nor did her sisters, a common misconception connected with the disease.
Her youngest sister died eight years ago while on the waitlist for a liver transplant, while her eldest sister died Jan. 20. She was also on the transplant list until she was told she was too weak to survive the surgery, said Mowatt.
Now Mowatt fears the same fate awaits her.
“When my doctor told me my liver was failing I got really upset … thinking about how much time I have left,” she said.
“I did everything I could to help myself, the liver flushes and everything. The doctor said it levelled off but that I can’t go back now. It’s failing. It’s not going to get better.”
Two weeks ago her doctor told her she had about three months to live.
“It’s so frustrating, so sad,” she said, her voice shaking. “I need to be here for my grand babies. They need me.”
Mowatt’s daughter Kimberly Mowatt is a potential match and a willing donor, but it costs at least $300,000 just for the surgery. After spending her savings to help her son with multiple sclerosis, she said it’s unlikely the family could come up with the money.
Her youngest daughter Kerry Mowatt has set up a Go Fund Me page to raise money but they know it’s unlikely they can raise enough.
Mowatt describes her mother as someone who gives so much to others, worked her whole life in the justice system, and takes pride in her community.
“She’s been a caretaker to all, especially her son who has been battling a severe form of MS; an advocate that enabled him to get experimental treatment to get him a much more comfortable life as well as hopefully lengthen his life span,” said Kerry Mowatt.
The family will continue to fundraise to cover accommodation and meals in hopes they can go ahead with the surgery in Edmonton. The clinic has informed them that it can do the transplant with a reference from her liver specialist in B.C., which she says she has.
“I just need some confirmation from our government that it will be covered as I do not have insurance,” said Val Mowatt. “I will keep trying and I will try to get my doctor to help.”
She said the waiting time to be approved to be on the Transplant B.C. waiting list for a B.C. donor is two months.
Tina Robinson, a spokesperson for B.C. Transplant, said as of March 1 there are 720 people in B.C. waiting for an organ transplant. Of those, 41 are waiting for a liver. In 2020, the liver transplant program performed 80 liver transplants.
Once a patient has a donor willing to be assessed for consideration, several steps need to occur, says Nem Maksimovic, the manager of national health promotion and education with The Canadian Liver Foundation.
The patient’s specialist needs to send a referral to the designated transplant centre, in this case coordinated by B.C. Transplant. Then the patient is assessed by B.C. Transplant and possibly put on the waitlist. From there the patient can be referred to one of the centres that do live donor transplants, he said.
Maksimovic didn’t know why a patient couldn’t skip going on the B.C. Transplant list and have a referral sent to the Edmonton centre.
“It’s not as smooth a process as people might think, especially given this is a life or death situation for someone,” he said.
He noted that last year about 600 liver transplants were performed in Canada and of those 80 were live donor transplants. He added that more people die waiting for a liver than other organs.
“It’s a really big issue and important that we highlight the barriers for these community members who simply don’t have access,” he said.
“It’s arguably a bit messy. We should be looking at ways to make it more efficient to get people tested as well as living donors.”
The provincial government did not respond to repeated requests for comment while B.C. Transplant did not respond to further questions by deadline.
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