The captain’s armband that Cristiano Ronaldo angrily threw to the ground during Portugal’s World Cup qualifier in Belgrade last week has been sold to an unidentified bidder for $ 75,000 US at a charity auction, Serbian state TV reported on Friday.
A Serbian humanitarian group put the blue armband up for online bidding to raise money for medical treatment for a 6-month-old boy suffering with spinal muscular atrophy.
The three-day auction didn’t pass without controversy as some participants tried to disrupt the process by putting up unrealistically huge sums. The fake bidding triggered public outrage with authorities pledging to find and punish the culprits.
Moments before last Saturday’s match with Serbia ended in a 2-2 draw, Ronaldo walked off the field after his injury-time goal was disallowed. The Portugal great dinked the ball over the Serbia goalkeeper and it looked as if it crossed the line before being cleared by a defender.
While heading to the dressing room before the final whistle, Ronaldo angrily threw down his armband near the touchline. After the match, it was picked up by a firefighter on duty and given to the charity group.
Ronaldo was criticized for his actions and some believe his angry display could lead to FIFA sanctions.
Lying on the couch by the Christmas tree in her Toronto home, four-month-old Eva Batista begins to cry as her mom places a suction mask over her face to remove excess saliva building up in her throat.
Eva has spinal muscular atrophy, a rare, potentially deadly genetic disorder that weakens her muscles, making it difficult to breath at times or eat without the aid of tubes.
The only possible cure, a gene therapy called Zolgensma, costs $ 2.8 million for a one-time dose.
Eva’s parents, Jessica and Ricardo Batista, have two hopes for obtaining the potentially life-saving treatment: either through an international dose lottery run by the Swiss manufacturer of Zolgensma or a long-shot fundraising campaign to raise the money themselves.
But they don’t have much time.
Their daughter must get a dose before she turns two for it to work.
Eva was diagnosed with the disorder weeks after she was born, immediately setting her parents on a desperate search for a way to give her the best shot at life.
“It was overwhelming,” Ricardo said of learning Eva’s diagnosis. “It was kind of like [hitting] a brick wall.”
Spinal muscular atrophy affects one out of every 8,000 to 10,000 people worldwide, according to the U.S. National Institutes of Health.
Zolgensma targets the root cause of the disease. The treatment would replace the function of the survival motor neuron 1 (SMN1 gene), which could eventually allow Eva to walk.
Novartis, the Swiss-based pharmaceutical company that produces the drug, tells CBC News it intends to seek Health Canada approval to sell Zolgensma here.
For now, the treatment is only available in the U.S.
‘It should be based on need, not how lucky you are’
The Batistas are partly pinning their hopes on a lottery Novartis is opening on Jan. 2.
It will give out 100 free doses of Zolgensma to children under the age of two from countries where the treatment hasn’t been approved.
The company tells CBC News its intention is for this to be a long-term commitment with additional doses added to the program based on patient need and the expansion of its manufacturing capacity.
But the method of distributing the drug based on a lottery system is facing backlash from some in the medical community.
“It should be based on need, not how lucky you are in a lottery,” said Joel Lexchin, a health policy expert with the University of Toronto.
“This [cost of Zolgensma] is an example of drug companies exploiting people’s desperation.”
So far, the Batistas have raised more than $ 1.5 million through a Go Fund Me page and charity dinners to pay for a trip to the U.S. to buy Zolgensma on their own.
However, they’re still short more than $ 1 million as the clock keeps ticking for Eva.
A spokesperson for Novartis tells CBC News its gene therapy is priced in the U.S. at approximately 50 per cent less than the current 10-year cost of chronic spinal muscular atrophy treatment, which stops working if a patient stops taking the medication.
“AveXis [a Novartis company] understands families grappling with an SMA diagnosis are in need of promising therapies and has been working to explore all options to provide access wherever possible,” spokesperson Samantha Schwarz wrote in an email to CBC News.
“One-time treatment options, compared with reoccurring options over long periods of time, may reduce the burden of disease to patients, families, and the overall health-care systems by replacing repeat, lifetime therapy.”
‘That’s not fair’
The Batistas want a shot at the Novartis lottery. But in order to apply, they have to prove Eva’s current treatment is ineffective.
The requirement has befuddled her parents because the treatment they are currently administering, called Spinraza, can only slow down the symptoms, not reverse them.
Jessica and Ricardo said they can’t understand why Eva should be denied a treatment that could drastically improve her life.
“I would understand a bit better if there wasn’t any other alternative, but there is something out there,” Jessica said.
“The fact that we can’t get access to it. And so she’s basically on her last breath — that’s not fair.”
In the meantime, the Batistas can try to get Zolgensma through Health Canada’s Special Access Program, but they face similar hurdles.
The Batistas said their doctor has not applied on Eva’s behalf because Zolgensma is only granted when conventional therapies have failed. The parents say the doctor doesn’t think Eva would have a strong case because she is on Spinraza.
“It’s heartbreaking,” said Marilyn Gladu, Conservative health critic and MP for the southern Ontario riding of Sarnia-Lambton.
“I would hope that the health minister would intervene with the Special Access Program to allow them to have this drug brought to Canada.”
Gladu is calling for changes to Ottawa’s approval process for restricted medications to speed up approvals and lower costs.
‘We need a national framework for these orphan drugs’
NDP health critic Jenny Kwan said Eva’s case highlights flaws in Canada’s health-care system when it comes to what are known as orphan drugs, cutting-edge treatments for rare disorders for which there isn’t enough of a market to make them commercially viable without government funds.
“I think this case speaks to exactly the reason why we need a national framework for these orphan drugs,” said Kwan, the MP for Vancouver East.
“Nobody should have to depend on the luck of the draw in Canada to access life-saving medication. We’re better than that.”
The NDP is pushing for a universal pharmacare program that includes access to drugs that treat rare diseases.
In a statement to CBC News, Thierry Bélair, a spokesperson for Health Minister Patty Hajdu, said the federal government made a commitment in 2019 to spend $ 500 million per year to help Canadians with rare diseases access drugs not yet approved.
Part of the money is going toward the creation of a national strategy to gather evidence on high-cost drugs for rare diseases and help negotiate lower prices.
“Canadians with rare diseases and those who care for them face unimaginable challenges,” Bélair wrote. “Our government is committed to getting them the help they need.”
As Ottawa works on a plan, time is running out for Eva and her parents.
“It’s not a game,” Ricardo said. “If there is something available, why do we have to wait till she’s failing and in her last moments?”
Welcome to The National, the flagship nightly newscast of CBC News 45:17
Sometimes life’s toughest moments can lead to unexpected new beginnings.
That’s what happened for Toronto mom and nurse Gwen Broda. She’d just started her third maternity leave when she found out she didn’t have enough hours to qualify for Employment Insurance parental benefits.
“I was really angry. I thought, ‘I’ve fallen through a gap in the system here,'” she told CBC Toronto. “It’s not fair.”
She and her partner managed to get through, but Broda says the experience opened her eyes to the struggles many less-fortunate moms face. So, she says, she turned her anger into action.
Almost six years later, she’s helped more than 1,000 moms struggling to provide the basic necessities for their kids.
She started the New Mom Project, a registered charity, out of her North York living room in 2014.
Calling on friends and neighbours for donations of gently-used baby clothes and supplies, she delivered them to moms in need out of her SUV for the first few years.
Now she’s got an 800-square foot donation centre in the city’s east end near O’Connor Drive and St Clair Avenue East and a proper delivery truck.
“You never expect where things are going to take you,” said Broda, who runs the project while still working part-time as a visiting nurse.
“It’s the demand and non-existent other support for parents. There’s not many ways to get things for your babies that are free.”
She says many of the clients are newcomers to Canada. The centre operates on an application basis that works with community partners, including hospitals, midwife clinics, shelters, community health centres, and Toronto Public Health programs.
Once approved, a mom can visit the centre up to five times. There is no catchment area and no age restrictions.
“It’s our goal to make sure everybody who needs it can have it,” she said.
Moms pick out the items they want and often, Broda says, they end up forging new friendships.
Many return as volunteers, she says.
‘It’s like a big family’
When Chanelle Blair first heard about the New Mom Project, she wasn’t so sure it was for her, but her doctor encouraged her to give it a try.
She was 20 with two small children and a third on the way. Her eldest, who was four years old at the time, needed a new car seat.
Broda showed up on her doorstep with just that and soon the two became fast friends. Now Blair volunteers her time at the centre and mentors other mothers.
“It’s like a big family,” said Blair, now 25, and a mother of four. “Sometimes you feel alone and it’s not good to feel alone when you have a child.”
With Broda’s help, she’s training to become a personal support worker, and she’s hoping to one day open a sister organization to the New Mom Project.
“If I can start something that could help [young moms] or feel like they have that someone of support, like what Gwen kind of gave for me. She’s more like a mother figure.”
Room to grow
With a wait list and moms travelling from Brampton and Mississauga to get to the donation centre, Broda hopes to expand to multiple locations.
It’s something that’s desperately needed, according to registered midwife Care Sinclair.
She says becoming a parent can be an overwhelming experience, which is only heightened for families struggling to get access to resources.
“It can impact our mental health and impact our ability to care for ourselves and our babies,” said Sinclair, who opens up her front porch in the west end as a second donation drop-off location.
“It’s so important we have services like the New Mom Project, where we can help families get the resources, take that off their list, so we can help them spend time with their infants and make the most of the moments they’ve got — without them having to be panicked or overwhelmed by lack of diapers or lack of warm clothes.”
The annual report from the office of the B.C seniors advocate says the percentage of the population of people age 65 and over continues to expand, up from 14 per cent in 2018 to 18 per cent in 2019.
The growth represents the bulge of the baby boomers moving into the seniors demographic, but B.C. Seniors Advocate Isobel Mackenzie says the proportion of seniors is not evenly distributed throughout the province.
“Vancouver Island does have the highest percentage of people over the age of 65 — 24 per cent … compared to the north where only 13 per cent of the population is over the age of 65. So, we might want to pay more attention here on the island,” Mackenzie told CBC’s On the Island host Gregor Craigie.
According to Mackenzie, the health-care system won’t feel the full impact of the aging baby boomers for another few years.
According to the report, the number of seniors’ subsidized housing units continued to shrink for a fifth straight year, with the waiting lists for such units increasing in tandem.
“That’s a troublesome trend,” said Mackenzie. “We’re certainly going to be having some discussions with B.C. Housing about why we’re seeing that.”
Staffing shortages and other problems
Mackenzie said a report coming in January will look at the whether care providers are actually providing the care they are being funded for.
“As we review a great amount of the data and reports back from care facilities to the funders, we find that, first of all, not everybody is delivering the hours of care they’re funded to deliver,” said Mackenzie. “And two, they’re not spending all of the money we’ve provided to them on delivering those hours of care.”
Earlier this year, complaints forced Island Health to take over the administration of senior care facilities in Courtenay and Nanaimo after they were found to be chronically understaffed and non-compliant with the Community Care and Assisted Living Act.
The facilities in question are part of a group of 23 seniors homes that were bought by China’s Anbang Insurance Group in 2017 in a federally approved sale.
Seventy per cent of all the long-term care beds in the province are contracted out, receiving $ 1.4 billion in public money annually.
Mackenzie said there needs to be better tools to keep care providers in compliance.
“I’d like us to start talking about whether we can levy financial penalties for infractions far earlier in the process,” she said. Right now, there’s no incentive for a care home provider to be better than the next care home or to be excellent from a financial perspective. They get paid the same.”