Nadia Morrreale holds her daughter Julia Morreale, 6, who is in need of expensive therapy in the U.S. for the rare complication she experienced after getting a heart transplant. When OHIP refused to pay for the therapy, a program called PBLO at Sick Kids came to their aid.
Julia Morreale had a heart transplant when she was eight months old, but that was not the end of her battle.
She has had frequent rejection episodes and more recently has developed recurrent post-transplant lymphoproliferative disorder, a rare complication.
Doctors at the Hospital for Sick Children believe the best hope for the 6-year-old is CTL therapy, available in the United States.
But it’s considered experimental here, and OHIP has refused to pay for Julia’s out of country treatment, which costs $60,000 to $80,000 per three-week cycle.
“The big question is we don’t know how many times we will need to do it,” says Julia’s mother, Nadia Morreale, 34.
OHIP’s funding rejection can be appealed, but Nadia and her husband Elio are too overwhelmed looking after Julia and their two other children, 3 and 8, to take up this battle on their own.
But a program called PBLO at Sick Kids has come to their aid.
Funded by the Law Society of Upper Canada, it helps low-to-middle income families with legal problems while their children are in the hospital.
“These families are so overwhelmed with a sick or terminally ill child that they just don’t have the wherewithal to attend to these problems,” said Lynn Burns, executive director of Pro Bono Law Ontario, which partnered with Sick Kids and two law firms, Torkin Manes and McMillan, to create the program.
“They don’t even know there is a legal remedy available.”
Soon to be entering its third year, PBLO at Sick Kids has helped 1,000 families with free legal assistance on a variety of issues like disability benefits, OHIP appeals, taxes, and education, immigration, landlord and employment cases.
Modelled on a U.S. program called Medical-Legal Partnerships, it’s the first of its kind in Canada.
Now Pro Bono Law Ontario is about to launch a similar program at the London’s Children’s Hospital and hopes to eventually establish itself in Ontario’s two other kids’ hospitals in Hamilton and Ottawa.
To help the Morreales, the program’s on site “triage lawyer” hooked them up with Duncan Embury, a counsel at Torkin Manes specializing in medical cases.
He will argue their OHIP appeal at the Health Services Appeal and Review Board.
Embury, 42, and his firm have already put in at least 50 hours of free work — worth roughly $30,000 — on the case.
His assistance has been “huge,” Nadia Morreale says. “I really don’t have a minute in my day to deal with this, so if I didn’t have Duncan, I wouldn’t be fighting this appeal.”
Regardless of the appeal’s outcome, the Markham couple is determined to see Julia gets the pricey U.S. treatment.
“We will figure out how,” Morreale says.
Lee Ann Chapman, the program’s triage lawyer, gets the initial referrals from hospital staff, and is able to deal with most of them herself.
The more complicated cases — a maximum of 20 per cent — go to outside lawyers.
“Having a sick child can bring about a domino effect,” Chapman said. Families sometimes let important, practical issues slide because they’re so focused on their child’s health. Often they have no idea of their rights and have never had access to legal information, Chapman adds.
“Sometimes they are quite desperate,” she says. “That’s the job of our lawyers, to take the burden from them.”
Embury, one of the program’s co-founders, has personally handled about six such cases. He says he was surprised by how badly lower income families can be treated by public and private-sector bureaucracies.
“I can’t think of a cause that I find more worthy of our time as lawyers,” he says.
Reproduced from http://www.thestar.com/news/article/1112295