Tag Archives: Wait

Olympic swimmer Brent Hayden taking ‘wait and see’ approach to vaccines before Games

If he qualifies for this summer’s Olympic Games, Canadian swimmer Brent Hayden would prefer to receive a COVID-19 vaccination before arriving in Tokyo.

That doesn’t mean he wouldn’t go without getting his jab. He also isn’t sure if he would use the vaccine being offered to Olympic athletes as part of a recent partnership announced by the International Olympic Committee and China.

“I think that would be something I have to talk to my coach about, to figure out what we think is going to be the best decision,” said Hayden, who won a bronze medal in the 100-metre freestyle at the 2012 London Olympics.

“I do want to be vaccinated, I want to be covered at the Olympics. I don’t want to catch it and spread it. Now whether or not that’s the China one … I’m just going to have to wait to see what my coach or what Swimming Canada recommends.”

In the recently announced agreement, the IOC entered into a partnership with the Chinese Olympic committee to buy and provide vaccines for people participating in the Tokyo Games and next year’s Winter Olympics in Beijing.

None of the Chinese vaccines are approved for use in Canada.

In a statement, the Canadian Olympic Committee said it would prefer Canadian athletes use Health Canada approved vaccines.

“Our strong preference is that any vaccine a Canadian athlete receives has been approved by Health Canada,” COC boss David Shoemaker said in a statement.

“The COC will continue to follow Health Canada guidelines and the recommendations of our chief medical officer and the return to sport task force for all matters relating to the health and safety of Team Canada.”

WATCH | Should Olympians cut in line for vaccine?:

Some athletes say they want to wait their turn. 2:20

A Swimming Canada spokesman said they are encouraging athletes to follow the COC guidelines.

At least one Olympic expert said he isn’t surprised the by the IOC’s decision to buy vaccines or that they are being purchased from China.

Michael Naraine, an assistant professor with Brock University’s department of sport, said IOC president Thomas Bach has pushed for the Tokyo Games to go ahead, even though concerns remain about COVID-19.

“They weren’t going to force athletes to take the vaccine, but they wanted to do everything they could to ensure health and safety,” said Naraine, who studies major games and the Olympic movement.

“It’s not surprising that China would be the place where they were able to procure them. The supply chains are really tight now when you’re thinking about all the different countries that are trying to procure. When you think about scale in the supply chain, China’s clearly the top dog.”

WATCH | Why a COVID-19 vaccine isn’t the key to a fair Olympics:

Jacqueline Doorey speaks with Canadian middle distance runner Gabriela DeBues-Stafford to discuss the COVID-19 vaccine, how it can affect the Olympics, and whether athletes deserve to cut the line. 5:51

The IOC is also “very bullish on China” considering it’s hosting next year’s Winter Games and some of the major sponsors that comes with that, he said.

While athletes in some countries may be hesitant over the IOC’s offer, for others it might be their best chance to access the vaccine.

“If I’m an athlete in a country which has a very heavy strain on health care and the public health system, you’re looking at this as jumping the global queue as far as vaccination and inoculation is concerned,” said Naraine.

Wrestler Erica Weibe, a gold medallist at the 2016 Rio Games, supports more athletes having access to the vaccine.

It would be great if the IOC’s partnership “can help athletes and citizens of countries with less robust vaccination plans than Canada,” the Stittsville, Ont., native told The Canadian Press last week.

Prime Minister Justin Trudeau has promised that every Canadian adult who wants a vaccine will be able to receive a shot by the end of September.

In B.C., where Hayden lives, his age group is scheduled to receive their first round of the vaccine in May or June.

The Tokyo Games, which have been delayed a year due to COVID-19, are scheduled to open July 23.

Hayden, who retired after the London Games but decided to make a comeback for Tokyo, said not being vaccinated won’t stop him from competing.

“My goal is to go to the Olympics,” he said. “If I’m vaccinated or not vaccinated, I’m planning on going until they tell me I can’t go.”

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CBC | Sports News

Canadian canoeist Laurence Vincent Lapointe continues wait for Olympic fate

Star Canadian canoeist Laurence Vincent Lapointe has faced a long list of hurdles on her Olympic journey during this extended quadrennial.

Simply qualifying for the 2021 Summer Games has been a challenge for the 13-time world champion. Her lead-up to Tokyo has been impacted by suspension, illness, the pandemic and limited training and competition.

Vincent Lapointe, from Trois-Rivieres, Que., barely missed out on landing the C1 200-metre spot at last week’s Olympic Trials in Burnaby, B.C. Her C2 competition plans were derailed due to a fever.

Now she has to wait and hope that the International Canoe Federation will provide Canada an additional quota spot so that she can have a chance to compete in Tokyo.

“The only thing I can do right now is train and get better,” she said Wednesday on a video call with reporters.

WATCH | Postponed Games gives Vincent Lapointe second chance:

Anything that could go wrong for the canoer before Tokyo 2020, did. Now, she gets a second chance. 5:50

Vincent Lapointe and Katie Vincent of Mississauga, Ont., split the first two races in the C1 200. Vincent won a raceoff by less than half a second to secure the spot in the discipline, which makes its Olympic debut this summer.

“We are so thrilled to see two of the best paddlers in the world racing together after such a long hiatus and a challenging period of time,” Canoe Kayak Canada CEO Casey Wade said in a release.

“With respect to the women’s C2 500-[metre] event, we continue to work closely with the International Canoe Federation to secure an additional women’s canoe Olympic quota spot due to extenuating circumstances dating back to the 2019 world championships. This will also allow us to have a second entry in the women’s C1 200m event.”

After reporting her symptoms last weekend, Vincent Lapointe was removed from the competition and isolated, with a COVID-19 test later coming back negative, the federation said.

The C2 500 race was postponed to a later date. Canadian athletes were competing internally in that discipline even though there is no Olympic quota yet, a CKC spokesperson said in an email.

The federation remains optimistic that it will get a spot given the circumstances.

WATCH | Vincent Lapointe reflects on small town upbringing:

Laurence Vincent Lapointe, from Trois-Rivières, Quebec, says growing up in the small town was like having a big family. 3:05

In 2019, Vincent Lapointe faced a four-year ban after testing positive for the steroid-like substance Ligandrol. She missed that year’s ICF canoe sprint world championships — which doubled as an Olympic selection event — due to the suspension, leaving Canada with just the one quota spot.

Vincent Lapointe won her case last year after persuading a tribunal that the test was caused by bodily fluid contamination from her then-boyfriend. The decision by the anti-doping panel, convened by the ICF, allowed her to return to training and competition.

However, the pandemic has limited continental qualification opportunities over the last year. Results from the 2019 worlds have been a fallback, but that doesn’t help Vincent Lapointe given her absence.

Canoe Kayak Canada hopes to have an answer this month on its bid for an additional quota spot, which could allow Vincent Lapointe and Vincent to race in both disciplines. A World Cup is planned for mid-May in Szeged, Hungary, although qualification plans remain uncertain.

“We’re very optimistic that we’ll get the spot but we’re just waiting for all the unknowns to play out,” Wade said Thursday in a phone interview.

Wade added that Vincent Lapointe was innocent, unable to compete and essentially blocked from being able to qualify. He added that if the quota doesn’t come through, there was also a potential route for her to get a Tokyo spot for “truly exceptional circumstances.”

“If there’s ever a definition of an exceptional circumstance for a 13-time world champion, this is the one here,” he said.

WATCH | Vincent Lapointe wins gold at 2019 Canoe Sprint World Cup:

Vincent-Lapointe and her compatriot Katie Vincent finished first and second, respectively in the women’s C1 200-metre event at the ICF Canoe Sprint World Cup in Poznan, Poland. 4:56

A hair sample from Vincent Lapointe’s ex-boyfriend along with a product test helped them find the source of trace amounts of Ligandrol in her system, according to her lawyer. The panel accepted evidence which supported that she was the victim of third-party contamination.

Ligandrol, used to treat conditions such as muscle wasting and osteoporosis, is on the World Anti-Doping Agency’s list of banned substances because it has an anabolic steroid effect.

Vincent Lapointe has said her ex-boyfriend didn’t think the unnamed product contained banned substances but he didn’t do a thorough check. She added that he believed it would help with performance recovery.

She said Wednesday that the period before the tribunal decision “really did leave a mark” in her lead-up to the Games.

“I was doing really well in 2019 and then I got suspended,” she said. “That was really difficult because for six months I was completely left to my own devices.

“I couldn’t even talk with my coaches or my teammates.”

All athlete nominations for Tokyo still have to be formally approved by the Canadian Olympic Committee’s team selection committee.

“I do think I’m going to be able to get ready and be my best self this summer but it needs more, and with COVID we’ve been really restricted,” Vincent Lapointe said. “It has been difficult. A lot of mental work goes into it and I’m just working my best every day to do what I can.

“I’ll just try to survive the quadrennial, now at five years.”

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CBC | Sports News

Visitors to B.C. care homes deemed ‘essential’ move to front of vaccine line — others wait and worry

Jody Vance said her heart skipped a beat when she got an unexpected phone call from the long-term care facility where her elderly father lives.

She braced herself for bad news, but instead the voice on the other end told her something so many Canadians would love to hear: a dose of the Pfizer-BionTech COVID-19 vaccine was being set aside for her.

“It was kind of was a little bit surreal,” she said. “It felt like hope.”

Vance got the shot because staff at the long-term care facility in Delta, B.C., declared her an “essential” visitor for her 82-year-old father. Driving him to emergency cancer surgeries during the pandemic made her eligible for such status.

To Vance, the main benefit of being vaccinated is that her dad won’t need to be isolated from her for his own protection. 

B.C. is one of the few provinces — Ontario and Nova Scotia are taking a similar approach — ushering essential visitors to the front of the vaccine line as a priority group. It’s up to the discretion of each facility to determine who is considered essential.

There is no cap in B.C. on the number of approved essential visitors, but only one will be allowed at a time with exceptions made for end-of-life care.

Those left to wait say they are also left to wonder if the delay could ultimately be too long.

Visiting loved ones in long-term care during the COVID-19 pandemic often means no physical contact. (Ben Nelms/CBC)

A frustrating process

“I don’t know how long she’ll be with us,” said Niovi Patsicakis, speaking about her 98-year-old mother, who lives at Evergreen Long-Term Care in White Rock.

Patsicakis said her mom has been mostly confined to her room in the facility for nearly three months, and Patsicakis hasn’t been able to visit since before Christmas. She said she fears the lack of in-person mother-daughter visits has affected her mom’s health.

But unlike Vance, Patsicakis said she has not been deemed essential by her mom’s long-term care facility. 

According to the B.C. Centre for Disease Control (BCCDC), essential visits include those for compassionate care reasons such as critical illness, hospice care, end of life and medical assistance in dying. They can also include visits by a person who assists with feeding, mobility and communication needs.

WATCH | British Columbians with loved ones in long-term care talk about their experiences trying to get vaccine priority: 

As the vaccine rolls out in long-term care homes across the country, some provinces, including British Columbia, are also prioritizing essential caregivers for a shot to benefit residents and staff. But there’s some inconsistency about who qualifies as essential. 2:03

The B.C. Health Ministry has also said a clergy member can be designated as an essential visitor.

Health authority and facility staff, in collaboration with the long-term care resident, determine who gets essential visitor status, according to BCCDC in guidelines published on Jan. 7.

Patsicakis’ visits in the past have tended to be social in nature, but Patsicakis said her mother’s health seems to be deteriorating since their loss of contact.

“I can see a huge difference in how mom has gotten much worse,” said Patsicakis. “Her language skills have weakened as well as her mood. Sometimes, she’s confused or doesn’t want to get out of bed.”

Trying to get an essential designation has been difficult and frustrating, she said.

Niovi Patsicakis, right, says she has tried multiple times to be designated as an essential visitor so she can spend time with her mom, Sophie Patsicakis, left, who is 98 years old and in a long-term care facility in White Rock, B.C. (Submitted by Niovi Patsicakis)

Patsicakis said essential visitors to Evergreen are evaluated by a group that includes facility faculty and a representative from the local health authority, Fraser Health. She said she wrote Evergreen administration three times to plead her case and filed a complaint with an advocate at the health authority’s patient quality care office.

She said she requested Evergreen’s decision be sent to her in writing in November and never received it. As of Jan. 20, she said hadn’t heard anything from Fraser Health either.

“I know so many people are devastated,” she said, adding she is part of a social media group of others like herself who are supporting one another as best they can.

The National Institute on Ageing said families in British Columbia are enduring the most restrictive long-term care home visitation policies in the country.

B.C. Seniors Advocate Isobel Mackenzie says decisions around who qualifies as an essential or designated visitor can be arbitrary because care-home residents and their families don’t have an association that represents them. (Maggie MacPherson/CBC)

B.C. Seniors Advocate Isobel Mackenzie said the lack of an association that represents residents and their families at the 300 care homes in B.C. means they don’t have a voice in policy discussions between the government and care-home operators.

She said care home operators seem to be arbitrarily deciding who qualifies as an essential or designated visitor.

Patricia Grinsteed, 91, who survived COVID-19, touches hands with her daughter through a glass barrier at the Lynn Valley Care Centre in North Vancouver, B.C. in June. (Ben Nelms/CBC)

Dr. Bonnie Henry, B.C.’s provincial health officer, provided the latest numbers of people who had qualified as essential visitors during a press event on Jan. 18.

Henry said about 8,000 people have met the criteria and will receive a vaccination during the province’s first phase of a four-phase immunization program, which is underway. There are approximately 30,000 people living in long-term care facilities

“The default, we believe, should be that every person, every resident who has a person who can care for them, should have a designated essential visitor, but that has been a challenge to operationalize,” said Henry.

Applications for essential status are available on the provincial health ministry’s website. There is an appeal process for people who do not like the initial decision.

One Abbotsford long-term care home operator said the more people who are designated essential, the better.

“Because of staffing levels, this gives us that extra layer of assistance — they are doing things like supporting their loved one with feeding or mobility,” said Dan Levitt, executive director of Tabor Village. “So they need that vaccine, and that’ll make a big difference for all of us.”

B.C. Health Minister, Adrian Dix, said by March, when residents and staff at long-term care facilities have had both doses of a COVID-19 vaccine, people will have more social visiting access to their loved ones and some daily activities put on hold will begin to resume for residents. (Mike McArthur/CBC)

During a Friday press briefing, B.C. Health Minister Adrian Dix addressed the frustration felt by people disappointed to hear they are not considered essential.

“Everyone should feel that their participation, their social life, their visiting of their loved ones is essential,” he said.

Dix said vaccinating residents and staff in long-term care and assisted living facilities now could lead to eased restrictions around social visits by March, when all residents and staff are expected to have received both doses of their vaccines.

“It’s going to allow a lot of things to happen, including more visits from family members and loved ones and friends,” he said.

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Custio Clayton aims to end century-long wait for Black, Nova Scotian boxing supremacy

Custio Clayton says he’s been ready to fight for a world title for at least two years.

Saturday night in Uncasville, Conn., the undefeated 33-year-old welterweight from North Preston, N.S., faces California-based Kazakh Sergey Lipinets for the International Boxing Federation interim welterweight championship. A win would position Clayton to challenge the division’s biggest names – Terrence Crawford, Errol Spence, Shawn Porter or Manny Pacquaio – in bouts that could earn him life-changing paydays and a rock-solid legacy.

But in Clayton’s native Nova Scotia, where Black history and pro boxing are intertwined, the wait for a world title stretches back more than a century. A win Saturday night would make Clayton the first Black, Nova Scotian-born boxer to win a world title since Africville’s George “Little Chocolate” Dixon, whose title reign ended in 1900. Clayton’s aware of his link to pro boxing’s Black Canadian roots, and of the history he’ll bring to the ring with him against Lipinets.

“When I was growing up, I was always told there were a lot of great fighters from Nova Scotia,” said Clayton, who reached the quarter-final at the 2012 Olympics. “I’d be the first to bring a world title back to Nova Scotia in forever. That would be an awesome feeling.”

Custio Clayton cools off between rounds during his men’s welterweight quarter-final match against Great Britain’s Freddie Evans at the 2012 Summer Olympics in London. (Jack Guez/AFP via Getty Images)

On February 7, 1890, Dixon and then-featherweight champ Cal “The Wonder” McCarthy battled for 70 exhausting rounds before mutually agreeing to end their bout. Because both fighters opted to stop, the bout was ruled a draw. But Dixon, who according to contemporary reports, dominated the action, left the fight as the world featherweight champion.

That bout made Dixon the first Canadian fighter of any colour to win a world boxing title, and the first Black fighter of any nationality to become world champion under modern boxing rules. He would spend most of the next decade as world featherweight champ before losing his title for good in January of 1900.

Two years later Sam Langford, a 19-year-old from Weymouth, N.S., scored a fifth-round knockout over Jack McVicker at the Lenox Athletic Club in Boston, the first win in a pro career that, for a white fighter, would likely have led to a shot at the world heavyweight title.

But Langford was Black, fighting in an era when racism was both blatant and built into the sport’s infrastructure. His nickname for much of his career was “The Boston Tar Baby,” and he held the Colored heavyweight crown in the 1910s because Jack Johnson’s reign as champion triggered a frantic scramble to re-segregate the main heavyweight title.

Johnson won a 15-round decision over Langford in 1906, and after Johnson knocked out Sarnia’s Tommy Burns in 1908 to become the first Black world heavyweight champion, he and his management gleefully denied Langford a second fight.

The phrase “Great White Hope” dates back to Johnson’s reign, and the quest to find a white fighter to dethrone him. Johnson knew he would make more money pummelling Great White Hopes than he could in a tough rematch with Langford, so when an English promoter put up 3,000 pounds for a Langford bout, Johnson laughed off the offer.

“When London reporters asked when he would fight Langford again, [Johnson] would laughingly reply that he was ‘going to draw the color line,'” wrote Randy Roberts in Papa Jack, his seminal biography of Johnson. “In Langford’s case it was no joke. Johnson knew he would lose the title someday … but he would not lose it to Sam Langford. And certainly not for a measly 3,000.”

Indeed, Johnson never defended his heavyweight title against a Black fighter.

Rich boxing tradition

Since then, several other Black Nova Scotian boxers have appeared poised to join Dixon as world champions, but none has completed the circle.

In 1973 Clyde Gray, of Three Mile Plains, N.S., lost a dramatic 15-round decision to welterweight legend Jose Napoles at Maple Leaf Gardens, the first of Gray’s three unsuccessful world title challenges.

Halifax native Ray Downey Jr. emerged from a family of prominent boxers to win Olympic bronze in 1988, and Commonwealth Games silver in 1990, but ended his pro career in 2000 without fighting for a title.

And in July 2002, North Preston’s Kirk Johnson, lost by disqualification in a heavyweight title fight he still had a chance to win. Johnson outworked incumbent WBA champ John Ruiz for most of their fight, but also had three points deducted because of low blows. One last foul in round 10 prompted referee Joe Cortez to disqualify Johnson, who was winning on one judge’s scorecard.

“You’ve got rules to follow,” Johnson told reporters afterward. “If you break the rules, you lose. I broke a couple of rules. I lost.”

Clayton’s ‘wow’ factor

Trainer Eric Belanger, who coaches Clayton at their base in Gatineau, Que., says Clayton has the tools to finish what Dixon started. Specifically, Belanger says, Clayton’s rare mix of speed, power and boxing IQ give him the versatility to enact a range of game plans, and could land him among the welterweight division’s super elite.

“There’s no ‘wow,’ factor [entering this fight]. This is where we belong,” Belanger said. “He belongs in there with every one of the top guys at 147 [pounds]. There’s nobody we’d shy away from.”

A Clayton win over Lipinets would resonate immediately in his hometown, and across his broad but close-knit extended family.

Former NCAA basketball star and current Israeli pro league point guard Lindell Wigginton is a cousin of Clayton’s, as is Johnson, the now-retired heavyweight.

Clayton is fairly certain he’s also related to the boxing Downeys – it was an older cousin named Lucas Downey who first brought him to the boxing gym in Dartmouth, N.S., where he grew to love the sport. Soon after joining, Clayton learned the head coach, Gary Johnson, was his great-uncle, and Kirk Johnson’s dad.

WATCH | Clayton transitions to pro career after 2012 Olympics:

Custio Clayton weighs the option of turning pro to support his family. 2:16

“There’s so much history to go through,” said Clayton, who is 18-0 with 12 knockouts. “It just goes so deep.”

Of course, a win isn’t guaranteed. Lipinets briefly held a world title at 140 pounds, and has 12 knockout wins on his 16-1 record.

Belanger expects Lipinets to move forward and throw heavy punches, presenting a stiff challenge if not a difficult stylistic puzzle. But Lipinets says switching to trainer Joe Goosen has sharpened his in-ring intellect.

“It’s like going from a high school education then to college,” Lipinets said in a recent news release. “Now it feels like I’m in graduate school.”

Clayton, for his part, recognizes the stakes. He spent five weeks training for a late October fight, but his whole career preparing for this moment.

“He’s gonna bring it, and I’ve gotta be ready to be in a fight,” Clayton said. “I’ve been ready. When the opportunity comes, you’ve got to take it.”

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A 2-month wait to fix his 2 front teeth: The problem with the Ontario seniors dental program

A 73-year-old Windsorite is worried he might lose some of his teeth while he waits to be seen by a government-funded dentist.

The Ontario Seniors Dental Care Program (OSDCP) allows low-income seniors to visit a dentist for free, but the paperwork and few approved dentists mean there’s a lengthy wait. The program was announced in June 2019 but only launched the application system at the end of November.

For Rogers Villeford, he’s already spent six months with bleeding gums — and just last week another filling fell out. 

“I’ve had this for about six months … every day I bleed,” said Villeford. “I take mouthwash and keep it in there awhile and swish it … every morning I spit out blood.” 

Villeford’s income is about $ 18,000 a year. He was accepted into the OSDCP, but the appointment he was given is nearly two months away. 

“What good are [the dentists] if you have to wait?” said Villeford.

Locally the OSDCP is run by the Windsor-Essex County Health Unit. According to the director of health promotion, dentists under the program started seeing patients two weeks ago. 

“Our first senior seen under the program was January 6,” said Nicole Dupuis. 

Dupuis said so far the program has seen about 15 patients, with another 46 appointments already booked. Appointment bookings are as far away as March.

Nicole Dupuis, director of health promotion with the Windsor Essex County Health Unit says so far the program has seen about 15 patients, with another 46 appointments already booked. (Amy Dodge/CBC)

According to Dupuis it takes about one month between filling out the application to receiving a card that gives you access to the program. After the card comes in, seniors can book an appointment — but the first appointment is typically just a consultation. 

“We’ll have more appointment times going forward,” said Dupuis. “We have had a wait list in our clinics … a month is actually not too bad. We hope it won’t get too much longer beyond that time frame.”

Villeford decided he can’t wait that long, so he made an appointment with a dentist — but he’ll have to pay out of pocket for his treatment. 

“I don’t want to lose my two front teeth,” said Villeford, who expects to spend about $ 500 on the visit. “It’s a sham.”

Similar to the Healthy Smiles Ontario program, there is an emergency service that might be available for people who need immediate treatment. To get emergency dental care, seniors would have to fill out a form signed by their medical provider that states they need treatment right away. 

Villeford said the WECHU gave him an emergency appointment for Tuesday, but it won’t include any work like fillings. Instead it will be to address what the health unit might consider are more serious problems.

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‘We can’t wait’: Life-saving cystic fibrosis drugs hard to access, advocates say

No parent wants to outlive their children, but an Edmonton woman fears she might because her kids can’t access the drug that would help treat their rare medical condition.

Two of Sharon Stepaniuk’s three children have cystic fibrosis (CF), a genetic disease that causes severe damage to the respiratory and digestive systems.

“I really want my children to have the same potential that any other child has,” Stepaniuk told CBC News.

There are drugs available that can slow or stop the progress of cystic fibrosis, but getting coverage for them in Canada is rare.

Stepaniuk and 400 other Albertans sent letters to Health Minister Tyler Shandro earlier this month, calling on the province to make cystic fibrosis drugs more accessible, and to support the development of a federal strategy on rare diseases.

“If we had a rare-disease strategy which allowed these drugs to be approved, and our government went to the table and negotiated prices on these drugs and they were part of our publicly funded system, it would be such a weight off of me,” Stepaniuk said.

In the U.S., the Food and Drug Administration recently approved the drug Trikafta, which is said to slow or stop the progression of CF in about 90 per cent of patients.

“This is a drug that people are literally dying to get,” Stepaniuk said.

It was approved in Ireland last week, according to CF Ireland, but getting access to Trikafta in Canada likely won’t be so easy.

Kim Steele from Cystic Fibrosis Canada wants the federal government to assess drugs for rare diseases differently than it assesses more common medicines. (Keith Whelan/CBC)

“We’re fearing that it might not come to Canada if our governments don’t start covering these medicines,” said Kim Steele, director of government and community relations for Cystic Fibrosis Canada.

‘Blockbuster drug’ not submitted for approval

Health Canada has the power to approve new medicines, but provincial governments can decide which medicines get public funding, meaning drug coverage varies across the country.

Getting coverage for CF medicines that have been approved in Canada, namely Orkambi and Kalydeco, is highly uncommon due to eligibility restrictions.

Steele said to her knowledge, only one person has qualified for coverage of Orkambi out of the three provinces that offer reimbursement — Alberta, Saskatchewan and Ontario. Without coverage, she said it would cost about $ 250,000 for a year’s supply of either medicine.

Vertex Pharmaceuticals, the company that manufactures Trikafta, hasn’t submitted the drug for approval in Canada.

“Here is this blockbuster drug that could treat many people and many mutations, and … the manufacturer does not see Canada as a good market because the reimbursement environment is so dismal,” Steele said.

“There’s just not a fair assessment of these drugs and therefore, Canadians can’t get them.”

(Cystic Fibrosis Canada)

The small number of people affected by cystic fibrosis and other rare diseases limits the number of clinical trials that can be conducted. Steele said it’s unfair to hold drugs for rare diseases to the same evidential standard for drugs where more robust trials are possible.

“All we’re asking for is for our federal and provincial governments to develop a separate process for these drugs so that they can get to the patients in a fair and equitable and timely fashion,” she said.

More accessible treatments focus on the symptoms, and include medicine for excessive chest mucus and infections and physiotherapy to keep the airway clear.

‘We can’t wait’

The federal government hopes to implement a national pharmacare program. Meanwhile, Budget 2019 proposed investing up to $ 1 billion into a strategy for high-cost drugs for rare diseases, starting in 2022.

“We can’t wait until 2022 or 2023. People are already losing opportunities to live healthy and well,” Steele said.

“It’s probably going to take a decade or more to get to national pharmacare, and this is something that is more easily done … We can set up and start a new process for these drugs while national pharmacare is being built.”

Stepaniuk said she hopes to meet with Health Minister Shandro to encourage him to advocate for the 604 Albertans who have CF.

In an emailed statement to CBC News, Shandro said Alberta co-leads a provincial and territorial working group on costly drugs for rare diseases.

“This group is developing a new national process for reviewing drugs, as a basis for a longer-term project to develop a national rare disease strategy,” the statement reads, noting the province hasn’t gotten any updates on the federal governments proposal for a new strategy.

He said the province isn’t considering broad coverage for Orkambi, but is working with the manufacturer of Kalydeco to expand coverage within a year.

Stepaniuk said the provincial and federal governments need to act fast.

“If [my children] don’t get access to these drugs sooner rather than later, their lung function is going to decrease enough that by the time they do finally get access to them, it might be too late.”

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Organ transplants increase in Canada as wait lists grow longer, report shows

More than 200 people died in Canada last year while waiting for an organ transplant, according to a new report, despite improvements in organ donation practices. 

In 2018, a total of 2,782 organ transplant procedures were performed, the Canadian Institute for Health Information (CIHI) reported on Thursday, an increase of 33 per cent since 2009.

“It’s easy to take it as a number,” Juliana Wu, manager of the Canadian Organ Replacement Register at CIHI, said of the transplant data. “But when you come into contact with these families, you really recognize that this [organ donation] … is a chance at life.”

Transplant procedures increased over the last 10 years but wait lists are also growing. More than 4,000 Canadians are still waiting for an organ.

As transplant technology improves and Canada’s population ages, more people are opting for organ transplants, the report said, and this increased demand is leading to longer waiting times for patients in need.  

“If we look at kidney, which is where the demand is highest, I would say the growth in the number of patients who are newly diagnosed with end-stage kidney disease across Canada is the driving reason,” Wu said of the growing wait lists.

People who are diagnosed with kidney failure either need dialysis or transplantation.

In turn, the main cause for end-stage kidney disease is Type 2 diabetes, which is increasing as the general population ages, Wu said.

Out of almost 3,000 transplant procedures that were done last year, 1,700 were for kidneys. Livers were also a top organ transplanted at 533.

National conversation sparked

The number of people who volunteered to donate their organs after they die – known as deceased donors – increased by 56 per cent between 2009 and 2018.

The latest increase in deceased donor rates has been attributed in part to the “Logan Boulet effect,” named after one of the Humboldt Broncos hockey players who died in the team’s bus tragedy in April 2018.  He was also an organ donor who saved six lives.

“The public awareness, the public interest in that story was really helpful in making this a national conversation,” Wu said.

In Ontario, the Trillium Gift of Life Network, the province’s organ and tissue donation agency, has also pointed to an increase in families consenting to donation and more donors who had a medically-assisted death

Wu said the next step after increasing awareness is for people to make their intentions clear to family members who are asked to consent at a time of high emotions.

Deceased donors

In 2006, Canada adopted a policy of deceased donation after cardiac death for patients who don’t necessarily meet the criteria for brain death but their heart has stopped working and there’s no chance of survival.

The types of organs transplanted after cardiac death vary, with more kidneys and lungs transplanted. There were few to no livers, hearts or pancreases transplanted this way.

Dr. Jagbir Gill, a transplant nephrologist and associate professor of medicine at the University of British Columbia, said in a release that donation after cardiac death varies because of the complex nature of determining organ suitability for transplantation.

CIHI also said the number of donors after brain death increased by 21 per cent from 2009 to 2019.

In total, there were 762 deceased donors last year.

In 2018, 555 living donors donated a kidney or lobe of a liver, including through Canadian Blood Services’ paired kidney donation program

For most organ transplants, patient survival is greater than 80 per cent after five years, CIHI said.

While a living donor provides a single organ for transplant, a deceased donor can provide up to eight organs.

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Long wait times for abortion ‘unacceptable,’ Quebec Premier Legault says

Quebec Premier François Legault says wait times for abortions of more than four weeks in some regions of the province are “unacceptable,” and that the government is working to improve the situation. 

“There’s a lot of work to do: there are people to hire, like attendants and nurses,” Legault said. “What’s missing is organization. I couldn’t tell you it will all be fixed in a year.”

Abortion access advocates have denounced long wait times for surgery in the Quebec City and Chaudière-Appalaches regions of Quebec, resulting in patients travelling to Montreal for surgery. 

“We want to make a complaint to the [Health Ministry’s] commissioner of complaints, and we may also talk about going to the Protecteur du citoyen,” said Karine Angers, director general of abortion rights group SOS Grossesse. 

In Quebec City, patients will wait two to three weeks before obtaining a first appointment at the Centre hospitalier de l’Université Laval (CHUL) and the Hôpital Saint-François d’Assise. Surgery will take place within seven days of the first appointment, according to CHU de Québec spokesperson Bryan Gelinas.

In Chaudière-Appalaches, the entire territory is served by a single institution, the Hôtel-Dieu de Lévis, and the abortion clinic is only open once a week. Patients communicate with the hospital, and the abortion will occur in one appointment if the patient chooses the surgical method. 

Conversely, there are nine institutions in Montreal that offer abortion services — on top of four clinics specializing in women’s health — where the delays are usually 10 working days or fewer. 

There are no clinics specializing in women’s health in the Quebec City region or in Chaudière-Appalaches.

Holidays challenging

In December 2018, the absence of a doctor at the CHU de Québec, combined with statutory holidays on which abortion clinics are closed, posed some serious challenges. 

One woman complained to the CHU de Québec and the Chaudière-Appalaches Integrated Health and Social Services Centre’s complaints and quality services commissioner. 

In the document, which was obtained by Radio-Canada, the complainant says she contacted the region’s three resources on Dec. 17. 

The CHUL didn’t have a time slot available until Jan. 14, the Saint-François d’Assise had no slots until Jan. 15, and at the Hôtel-Dieu de Lévis, there was no availability before Jan. 16. 

Karine Angers, director general of SOS Grossesse. (Radio-Canada)

Finally, the complainant got an appointment in Montreal three days later. 

The CHU de Québec’s Gélinas said the situation was exceptional. 

However, Quebec’s federation for birth planning (FQPN) said the situation is ongoing. 

“We hear on the ground that there are still people who find themselves in a situation where they have to wait more than four weeks,” said FQPN coordinator Mariane Labrecque. 

Traveling to Montreal for an abortion

Abortion patients from the Quebec City region will sometimes travel to Montreal to get an abortion, according to the medical director of Montreal’s Fémina clinic, Claude Paquin. 

“There are some who will decide to take their car, come to Montreal, and deal with everything in one visit that lasts about three hours,” Paquin said. 

“Women appreciate having one single visit, one single appointment, in specialized clinics. I think it could be extended to CLSCs and hospitals.” 

SOS Grossesse’s director general says the lack of accessibility to abortion outside major centres is not new — but Angers noted an increase in the number of calls from patients who say they live with the psychological repercussions of the wait. 

“A woman does not want to be pregnant, but she has to live several weeks with something she does not want in her body,” Angers said. 

The organization is reaching out to patients who have had difficulty accessing an abortion to see what can be done. So far, nine anonymous patients have answered the call. 

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Autism diagnosis procedure should be reformed to ease wait times and stress, society says

Lindsay Roberts is home-schooling her son, not by choice but because the five-year-old boy would be prone to hitting people, screaming and suddenly running away if he became overstimulated in a classroom without any support.

“My little guy couldn’t start kindergarten because he can’t access support without a diagnosis,” Roberts said of Colton Roberts, who is showing symptoms of autism, the same neurodevelopmental disorder that affects his eight-year-old brother Travis.

So far, Colton has seen a pediatrician he was referred to by his family doctor, but is still waiting to see another specialist who could assess and diagnose his condition.

“The wait list for the pediatrician is a year and then the wait list for the actual assessment with the psychiatrist is another year to 18 months,” Roberts said from Lake Country, B.C.

“The system doesn’t offer support until the child is suspended many times or expelled. Then we can apply for support but that’s really hard on a child’s self-esteem,” she said.

Many parents choose to jump the public queue by getting a private assessment, but that’s not possible for those who can’t afford the extra expense, Roberts said. Funding for autistic children is not available until after a diagnosis and can’t be used to pay for assessments retroactively, she added.

Dr. Lonnie Zwaigenbaum, chair of the Canadian Pediatric Society’s task force on autism spectrum disorders, said the increasing prevalence of the condition calls for community-based pediatricians and other primary health-care providers to be trained and supported to assess and diagnose it and provide follow-up care.

A child plays at the Creekside Community Centre in Vancouver. (Maggie MacPherson/CBC)

“There have been pockets of innovation in Canada, really demonstrating that it’s possible to support community pediatricians to do some of that assessment work,” Zwaigenbaum said, adding that is the case in parts of Ontario, British Columbia and, to a lesser extent, in Alberta.

“This really needs to be part of the standard of care in Canada and to not do so contributes to disparities in access and also bottlenecks in the system and likely contributes to lengthy wait lists,” he said. The involvement of a team of health-care providers who assess autism is not always necessary and can be impractical in some areas, he added.

The society has released recommendations for a more flexible approach to diagnosis that would include community-based pediatricians, not just doctors and psychiatrists licensed to do so, using a range of interventions and resources including screening tools and a checklist for assessments involving conditions that could be associated with autism, such as dental, vision and hearing issues as well as sleep issues, anxiety and ADHD.

Functional challenges that could require physical, speech-language and educational supports are also considered, as well as questionnaires for parents and teachers and determining whether families are getting help with any social assistance needs.

New approach would help rural families

Zwaigenbaum said the approach would address concerns about lack of access in rural and remote regions, where developmental pediatricians aren’t available when parents become concerned about developmental issues, including lack of response when the child’s name is said, delay in language and limited eye contact.

“You may not even have a pediatrician in town, so trying to come up with a more flexible diagnostic assessment system that can be applied across the diversity of settings in Canada, I think, was really an explicit goal of this task force,” he said, adding all children across the country should be monitored for early behavioural signs of autism spectrum disorder during doctors’ visits regarding their development.

The aim is to use the recommendations as a blueprint for autism care in medical-school residency programs as well as continuing education courses, Zwaigenbaum said.

The society says autism spectrum disorder affects one in 66 Canadians aged five to 17, with boys diagnosed four times more often than girls.

A pediatric pod at the South Health Campus hospital in Calgary. (CBC)

Susan Watts, a family support representative for Autism Canada, said the society’s position on the role of community-based pediatricians would allow for earlier diagnosis, reducing stress among children and parents involving a condition that can affect their daily lives in profound ways.

Watts said a patchwork of diagnostic approaches exists across the country, with Quebec licensing only psychiatrists to diagnose autism while other jurisdictions’ requirements are not as strict.

That means children who moves from one province to another after being diagnosed may have to be rediagnosed and go through the waiting process all over again, she said.

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Partner of Ottawa man with brain injury says he faces ‘inhumane’ wait for specialized care

The family of an Ottawa man who suffered a brain injury last summer is concerned it could be months, even years, before he gets the treatment they say he needs.

Shawn Hill was returning from a bachelor party in late August 2018 when the chef and musician fractured the back of his skull, likely in a fall, just blocks from his home.

Initially, he seemed to be on the path to recovery, but about 10 days later, he slipped into a coma and suffered seizures and a pair of strokes, waking up with symptoms such as significant confusion and an inability to form new memories.

While Hill has been able to relearn basic tasks like walking and dressing himself, the mental impairments remain.

A few months ago, his specialized rehabilitation team at the Ottawa Hospital decided he’d “plateaued” and his spot would be given to someone who needed it more, said Melissa Acheson, Hill’s partner.

As a result, the 44-year-old was moved to a room in a secure ward at the hospital’s General campus. He now shares the room with three seniors. 

He doesn’t understand why he’s there. He feels like he’s in prison.– Melissa Acheson, Shawn Hill’s partner

“He doesn’t need to be taking an acute-care bed in a hospital,” said Acheson, who was with their nine-year-old son Levi as they sat in the hospital’s cafeteria.

“I’m concerned that he will actually start to decline even more cognitively, because he’s not getting the interaction and the support that he needs.”

Hill is now waiting for a spot to open up at either a local long-term care home or one of two specialized treatment facilities in Ottawa for people with acquired brain injuries, or ABIs.

The wait list for the care home could be anywhere from three months to three years, Acheson said.

For the specialized centre, it could take a decade or more.

“He talks to me about how he doesn’t understand why he’s there. He feels like he’s in prison and he doesn’t understand what he’s done,” Acheson said.

“I actually think it’s really inhumane.”

‘Great need’ for more residential programs

There is “definitely a shortage” of beds in facilities designed specifically for people with ABIs, said Ruth Wilcock, executive director of the Ontario Brain Injury Association.

“This is certainly not the first case that we’ve heard of … a younger person [potentially] going to a long-term care home,” said Wilcock.

Hill rests in his bed at the Ottawa Hospital’s Civic campus in November 2018, three months after suffering his brain injury, as Acheson and their son keep him company. (Trevor Pritchard/CBC)

While workers at long-term care homes may have some training when it comes to ABIs, Wilcock said specialized facilities are better equipped to handle the challenges of brain injury patients.

In Ontario, all those facilities are currently full, Wilcock said, because “the need is so great.”

“We definitely need more residential programs for those who are more severely injured, but we [also] need more supports in the community,” she said.

“So many people are falling through the cracks.”

Listen to nine-year-old Levi interview his dad

Lengthy wait depressing

When a CBC reporter visited Hill at the hospital earlier this month, he had just returned from a walk with a care worker.

He knew where he was, recognized his family and understood why he was in the hospital — although he thought he had only been there for six weeks, not a full year.

“He remembers everything, but not in the last year. Not since the damage, since the accident,” said Hill’s father, Tom.

The two go for coffee a few times a week, and Tom said his son sometimes gets “a little teary” at the prospect the hospital room may be home for the foreseeable future.

I wish there were more resources — more of a game plan — for people like him.– Tom Hill, Shawn Hill’s father

“For him to hear that it’s going to be 10 years before he has anything maybe more satisfactory, it would depress you. It would depress me. And it depresses him,” he said.

“It’s a difficult position for everybody, and I wish there were more resources — more of a game plan — for people like him.”

The province recently announced $ 155 million toward home and community care, with $ 15 million funding “community-based services” that would include programs for people with brain injuries, said David Jensen, spokesperson for both Ontario’s Ministry of Health and the Ministry of Long-Term Care.

The Champlain Local Health Integration Network (LHIN) also began providing $ 500,000 annually to the Ottawa Hospital in recent years “specifically for assisted-living services for people with ABI,” Jensen wrote in an email.

A traumatic brain injury wiped out Shawn Hill’s short-term memory and left him cognitively impaired. Now he’s living in a hospital bed while he waits for specialized care; a wait Shawn’s partner just learned can be 10 to 20 years. 13:22

Jensen couldn’t say, however, how long wait times for ABI-focused facilities are in Ontario.

“There is no centralized intake process for residential ABI facilities, and the LHIN does not have data on wait lists and wait times. Providers may have that information directly,” he said.

Ideal outcome ‘just isn’t possible’

Acheson wishes she could bring Hill home and be his primary caregiver, but that would mean giving up her managerial job at a local grocery store — a salary she needs to raise their son.

For now, the two of them visit as much as possible, while also trying to move forward “in any way we can.”

Acheson is now the primary guardian for nine-year-old Levi after Hill suffered the brain injury. (Trevor Pritchard/CBC)

Being back in the hospital ward, Acheson added, gives her flashbacks to the days immediately after Hill’s accident, when no one was sure if he’d even survive.

“I feel like the outcome that I want just isn’t possible,” Acheson said.

“But in a perfect world, the outcome would be that Shawn is in a place where he’s supported and getting the care that he needs and able to have some kind of quality of life.” 

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