CALGARY — A big sushi meal would have once made Josh McQuillin gravely ill, but the British Columbia man can now gorge on one of his favourite foods worry-free thanks to a breakthrough clinical trial for his rare genetic disorder.
McQuillin was 12 when he was diagnosed with urea cycle disorder, a life-threatening condition that causes ammonia to build up in the body and can put a person in a coma.
He had to strictly limit how much protein he ate and took expensive medication several times a day. He could never be too far from a hospital, which made it hard to travel abroad or join friends backcountry camping.
“Now I can eat as much protein as I want. I’m eating differently, sleeping differently, exercising differently,” McQuillin, 30, said during a monitoring appointment at Calgary’s Foothills Medical Centre on Thursday.
“I’ve gained a bit of weight. I’ve never had to fight weight gain before, which is kind of funny. I’ve always been underweight my whole entire life.”
The genes needed to process ammonia were delivered to McQuillin’s liver intravenously. A virus, modified to be harmless, was used as a transmitter. It’s believed McQuillin is the first Canadian to receive gene replacement this way. Only three other people in the world have undergone similar treatment.
McQuillin, who lives in Prince George, B.C., said he felt the results two weeks after the one-time injection.
Aneal Khan with the University of Calgary’s Cumming School of Medicine is leading the trial. He also treated McQuillin in Ontario when he first got sick as a boy.
Khan recalled telling McQuillin’s parents years ago that he wasn’t sure their son would survive.
“Since he’s had this therapy, his ammonia has not gone high, despite him eating whatever amount of protein he wants. It’s a massive change,” said Khan. “We’re very excited — especially for rare genetic diseases, DNA diseases — that we don’t have to tell the parents that stuff anymore.”
Khan said the treatment is being studied for other genetic diseases involving the liver such as hemophilia.
Alberta Health Services has set aside beds in Foothills hospital’s intensive care unit for clinical trial patients. That’s important, because it’s often not known whether an experimental treatment will have serious adverse effects, said Christopher Doig, a medical director in intensive care for the agency’s Calgary zone
“They can get it in a very safe way where they can be very closely watched, very closely monitored. At the same time, we’re not using resources taking away from other patients.”
McQuillin said he’s looking forward to going on a road trip in the United Kingdom this spring without having to worry about his medication or whether the nearest hospital can treat his condition. He can also rest easier when on his forestry job, which once required painstaking meal planning for trips into the bush.
“Everything’s 100 per cent good to go for now,” he said.
“I guess my only concern or fear is they don’t know really how long it will last. But it’s definitely exciting.”
Lauren Krugel, The Canadian Press
Note to readers: This is a corrected story. An earlier version had Josh McQuillin’s last name spelled incorrectly.
Lyme-infected ticks are so common in parts of Canada, testing no longer done
OTTAWA — Lyme disease has settled so deeply into parts of Canada many public health units now just assume if you get bitten by a tick, you should be treated for the potentially debilitating bacteria.
In Ottawa, where more than half of the ticks tested in some neighbourhoods carry the bacteria that causes Lyme disease, the public-health unit no longer bothers to test ticks because it’s assumed they carry the illness.
Dr. Vera Etches, the top doctor at the health unit, says that means if a tick is found on a person, and is believed to have been there for more than 24 hours, then the patient should get antibiotics to prevent Lyme infection.
After three days, preventive treatment won’t work so patients then wait for symptoms or enough time for antibodies to evolve to show up on a test.
Similar rates of Lyme disease have been found in parts of every province except Alberta, Saskatchewan, Prince Edward Island and Newfoundland and Labrador, but the disease is marching further afield every year.
Lyme disease began appearing in Canada in the early 1980s but it has only been since about 2012 that the ticks that carry the bacteria have become plentiful, mostly due to warmer winters that allow more of them to survive.
The Canadian Press
Premier wants answers on mental health detainee who fled, calls man a ‘nutcase’
TORONTO — Ontario’s premier vowed Thursday to get answers on how a patient detained at a mental health hospital for killing his roommate managed to flee, calling the man a “nutcase,” as two organizations involved launched internal reviews.
Zhebin Cong, who was found not criminally responsible for the death of his roommate, had been on an unaccompanied trip into the community from the Centre for Addiction and Mental Health on July 3 when he failed to return, the hospital said.
CAMH said it reported the 47-year-old’s disappearance later that day to police, who issued a notice asking for the public’s help in finding the man nearly two weeks later. Police say Cong has fled the country and they are working with international law enforcement agencies to track him down.
Toronto police have said CAMH told them Cong presented a low risk to public safety, but the Ontario Review Board, which evaluates the status and assesses the risk of anyone found not criminally responsible, found in its most recent decision in April that he continued to pose a significant threat to public safety.
Premier Doug Ford phoned in to a talk radio show Thursday on NewsTalk1010 to say he’s “disgusted.”
“What is the family thinking of the poor victim that got chopped up with a meat cleaver by this nutcase and then they let him loose out on the streets,” he said.
Ford said he would be speaking with Toronto police, the review board and CAMH.
“Someone’s going to be answering because if you’re calling this low risk, what is high risk?” he said. “These crazy, crazy people that want to go around chopping people up, they’re out on the streets.”
Toronto Mayor John Tory called on the provincial government to launch an independent review.
“I believe such a review could work with CAMH and the Ontario Review Board to address issues related to Mr. Cong’s disappearance from the facility and the city, but there are other questions which go well beyond that and which require answers if the public is to be confident that this kind of thing won’t happen again,” Tory said in a statement.
He said important questions include when the police were notified, what they were told, did Cong have a passport, and how did he manage to leave the country given his status.
A spokesman for Public Safety Minister Ralph Goodale didn’t answer a question on whether the federal government was looking into how Cong left the country.
“The recent passage of our Entry/Exit legislation will require airlines to share their passenger manifests in advance, enabling law enforcement to better respond to the outbound movement of known high-risk travellers before their actual departure,” Scott Bardsley said in a statement.
CAMH said it is doing an internal review and is reassessing all existing passes and privileges for patients, especially those who have unsupervised access to the community.
President and CEO Catherine Zahn said in response to the premier’s comments that the hospital takes the incident extremely seriously.
“The mental health system has moved from resignation to recovery, and from institutionalization to integration,” she said in a statement. “Nevertheless, it is clear that there is still work to do to address misperceptions surrounding mental illness, as well as the prejudice and discrimination faced by those who live with mental disorders.”
The CEO of the Canadian Mental Health Association called the premier’s language unfortunate.
“We understand the concerns about the safety of all of our citizens and I share the premier’s concern on that front, but we’re in the business of breaking down stigma and raising the narrative of how we talk about mental illness as a society,” said Camille Quenneville.
“So that kind of language is very disappointing. It makes it much more difficult for individuals who are struggling to step forward and seek the help that they need…There are many, many people who have a diagnosis of schizophrenia who lead healthy, productive lives. I don’t want the public to believe that that diagnosis is automatically going to lead to violent behaviour.”
Solicitor General Sylvia Jones, when asked about Ford’s comments, said “emotions are high right now.”
“The individual in question, frankly, did a very heinous crime so the community is concerned,” she said. “What the premier was communicating was the strong emotion that people feel about ensuring their safety is protected.”
Toronto Police Chief Mark Saunders said Thursday that in addition to investigating how Cong fled — including checking if he received help to leave the country — the force is doing an internal review to look at their own processes, training and communication with community agencies.
“I can clearly say there were some gaps,” he said. “The fact that this was reported to us on July 3rd and then…it’s 11 days before it goes out to the public. That definitely causes some issues for us to have a look at. That’s the first thing I’m going to do.”
Records from the Ontario Review Board show Cong killed his roommate with a meat cleaver in 2014 and was found non-criminally responsible on a charge of second-degree murder as a result of his mental illness.
Cong was an in-patient at the secured forensic unit of CAMH and deals with schizophrenia, the records show.
He was granted a pass to the community by medical officials that allowed him to leave the hospital for a fixed purpose on the condition that he return at a fixed time.
In its April decision, the board found Cong’s condition had slightly improved with ongoing anti-psychotic medication, but that he did not fully understand his mental illness, its symptoms and his risk of relapse and violence.
Review boards — independent tribunals made up of at least five people, including at least one psychiatrist — conduct annual reviews of people found NCR and can order that the person remain detained in a hospital, with varying levels of privileges, release the person on a conditional discharge or order an absolute discharge, based on risk.
The review board system lets NCR people into the community — once they’re deemed ready — for short periods of time under close supervision to see how well they can cope. If they do well, they can be granted more privileges at subsequent hearings, step by step. If they don’t fare well, the review board pulls the reins of supervision a little tighter.
— with files from Shawn Jeffords
Allison Jones, The Canadian Press
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