Parents plead for treatment to aid sick kids Health ministers asked to provide drug coverage for rare disorders
The Toronto Star, DENNIS BUECKERT, Canadian Press, Oct. 23, 2005
Health ministers were confronted yesterday by desperate parents who say governments are condemning their
children to death by refusing to cover drug treatments for rare disorders.
Ontario Health Minister George Smitherman had briefly left the closed-door meeting on a bathroom break when
he found himself being introduced to Jasmine Sekhon, 7, who suffers from a rare condition called MPS, or
mucopolysaccharide.
"I need my IV back," Jasmine told the minister, referring to intravenous infusions that have proven
effective in treating the debilitating and eventually fatal condition.
"Well that's what we're working on here, today," said Smitherman, offering the first indication that
coverage of rare conditions is on the ministers' agenda for their weekend meeting.
Jasmine received the drug as part of a clinical trial, but when the trial ended she was denied further
treatment. Her brother Anmoldeep, who has the same condition, was also cut off.
"The government is not paying, the hospital is not paying, the company (that manufactures the drug) is not
paying," said Joginder Sekhon, uncle and guardian of the two children. "We're left alone and it's a very
devastating thing."
Jasmine is one of six Ontario children with MPS who will die unless the provincial government covers the
treatment, said Kirsten Harkins, executive-director of the Canadian MPS Society.
She said the treatment, which costs $350,000 a year, is covered in British Columbia, Alberta, Saskatchewan,
Quebec and Newfoundland and Labrador, but not in the other provinces.
Fabry's disease is another debilitating illness that can be treated, but only at a cost that provincial
governments have been reluctant to cover. The variation in drug coverage is a major sore point for critics
of Canada's balkanized health system, where each province tends to set its own policies.
Harkins says her son Nicholas has been on the therapy for two years and it has stopped the progression of
his illness. She said Canada needs a national policy on so-called "orphan" drugs.
MPS victim Mackenzie Olsen, 10, is continually smiling although he wears two hearing aids and has an odd way
of walking because of his disease. He was one of the first in Canada to receive the drug but was also cut
off.
Working through an aboriginal association, Mackenzie's parents were able to get treatment in Calgary, but
they worry they could get cut off again.
"It's a death sentence," said the boy's father Raymond Amato. "He will not last without the treatment. He'll
start deteriorating. All these children will. Let's get all these kids on treatments."
Yukon Health Minister Peter Jenkins told Mackenzie's parents they should be lobbying federal Health Minister
Ujjal Dosanjh on the issue.
Dosanjh in fact met with Mackenzie's parents privately, and there are hopes this weekend's meeting will
produce an announcement on the drug issue.
Divorced fathers get a bad rap for not supporting their children. The truth is, many can't. And, tragically,
some are driven to desperate measures, including suicide.
In his suicide note, Jim, the father of four children, protests that
"not all fathers are deadbeats." Jim hanged himself because he couldn't
see any alternative. Even now, his children are unaware of the
circumstances of their father's death. Meeno Meijer, National Post
George Roulier is fighting to regain money wrongfully taken from his
wages by the Ontario child-support collection agency. Chris Bolin,
National Post Alan Heinz, a Toronto firefighter, has gone bankrupt
fighting for the return of his daughter, 3, from Germany. No one will
help him, but German authorities are trying to collect child support
from him.
Whenever fathers and divorce are discussed, one image dominates: the
'deadbeat dad,' the schmuck who'd rather drive a sports car than support
his kids. Because I write about family matters, I'm regularly inundated
with phone calls, faxes, letters and e-mail from divorced men. It's not
news that divorced individuals have little good to say about their
ex-spouses. What I'm interested in is whether the system assists people
during this difficult time in their lives, or compounds their misery.
From the aircraft engineer in British Columbia, to the postal worker on
the prairies, to the fire fighter in Toronto, divorced fathers' stories
are of a piece: Though society stereotypes these men relentlessly, most
divorced dads pay their child support. Among those who don't, a small
percentage wilfully refuse to (the villains you always hear about).
What you haven't been told is that the other men in arrears are too
impoverished to pay, have been ordered to pay unreasonable amounts, have
been paying for unreasonable lengths of time, or are the victims of
bureaucratic foul-ups.
Read More ..
EDMONTON -- An Edmonton judge has decided a divorced dad has to make child support payments, even though
the child isn't his. Justin Sumner had an on-again-off-again relationship with the woman he eventually
married, Dawn Sumner.
She already had a child from a previous relationship with a man named Rob Duncan, and as she and Justin
broke up and reunited, Dawn was sexually involved with both men.
When she found she was pregnant, she called Justin, who recognized there was a possibility that Duncan was
the father, but later concluded he was the dad.
Andrew T. Renouf committed suicide on or about October 17, 1995 because he had 100% of his wages taken by the Family Responsibility Office, a child support collection agency of the Government of Ontario, Canada.
He asked for assistance for food and shelter from the welfare office and was refused because he had a job, even though all of his wages were taken by the Family Responsibility Office.
Andy was a loving father that hadn't seen his daughter in 4 years.
A memorial service was held in October, 1998, for Andy in front of the Family Responsibility Office at 1201 Wilson Avenue, West Tower, Toronto, Ontario, Canada. This is in the Ministry of Transportation grounds in the Keele St. & Hwy 401 area. All members of the Ontario Legislature were invited by personal letter faxed to their offices. Not one turned up. The Director of the Family Responsibility Office and his entire staff were invited to the brief service. The Director refused and wouldn't let the staff attend the service although it was scheduled for lunch time. There was a peaceful demonstration by followed by a very touching service by The Reverend Alan Stewart. The text of the service will soon be able to be read below.
The service made the TV evening news.
It was Andy's last wish that his story be told to all. YOU CAN READ HIS SUICIDE NOTE
Payers and recipients do not have direct
access to their assigned enforcement services officer
"There is only limited access to enforcement
staff because many calls to the Office do not get through or are terminated before they
can be answered."
"The Office is reviewing and working on only
about 20% to 25% of its total cases in any
given year."
"At the end of our audit in April 2010, there
were approximately 91,000 bring-forward
notes outstanding, each of which is supposed
to trigger specific action on a case within one
month. The status of almost one-third of the
outstanding bring-forward notes was "open,"
indicating either that the notes had been
read but not acted upon, or that they had not
been read at all, meaning that the underlying
nature and urgency of the issues that led to
these notes in the first place was not known.
In addition, many of the notes were between
one and two years old."
"For ongoing cases, the Office took almost
four months from the time the case went into
arrears before taking its first enforcement
action. For newly registered cases that went
straight into arrears, the delay was seven
months from the time the court order was
issued."
Read the shocking report by The Auditor General of Ontario Report on the
Family Responsibility Office
TORONTO - Ontario's controversial Family Responsibility Office
has been overbilling 1,700 parents, mostly fathers, for as long
as 13 years, the province admitted Friday.
The 1,700 parents were overbilled by an average $75 each month,
after the agency wrongly applied a cost of living adjustment
that was eliminated in 1997.
Those who were overpaid will not be forced to give the money
back.
Instead, taxpayers will foot the $5.3 million bill for the
agency's mistake.
"This error's been found and it's being corrected," said Liberal
cabinet minister John Milloy. "We're going to be reaching out to
those individuals (who were overbilled) and talking to them
about their situation, formally alerting them."
The Family Responsibility Office, or FRO, is responsible for
ensuring court-ordered child support payments are made. Read More ..
than 97 per cent of all payers overseen by the office are male.
Milloy said the agency discovered the problem at some point in
2011. No one will be fired for the mistakes, he added.
"I see this as something very serious," he said in an interview.
"I'm not trying to minimize it, but … there's been lots of
action taken to reform FRO, to update computer systems, to
update customer relations and it's on a much firmer footing."
The billing mistake is only the latest controversy to engulf
FRO.
"Canada's national newspaper for professional women"
On June 9, 2005 the McGuinty government announced the passage of Bill 155, legislation that promised to increase
enforcement, improve fairness and enhance efficiency at the Family Responsibility Office (FRO).
However, the legislation did not address the problem of accountability and, as things now stand, the FRO is a threat to every
Canadian affected by a government regulated support and custody arrangement system. Think of George Orwell's 1984
and you'll have a good picture of how issues are handled at the FRO.
They have legal power to extort money from Canadians, but are not responsible or accountable for their actions.
Last year an FRO staff member decided not to wait for a court date to review the financial status of an out-of-work
truck driver and took it upon themselves to suspend his license because he was, understandably, behind on his
payments, having lost his job earlier in the year. Although he was looking for work, the FRO cut off the only way he
knew of to earn a living. His suicide note explained how he'd lost all hope. Is this what we want FRO to be doing?
Read More ..
When families fall apart, they can make for the bitterest of enemies. The intensity of their hostility, the
personal rhetoric, the posturing and positioning, and the utter faithlessness of remembrance in the relationship's
good deeds and consequences is a breathtaking phenomenon. It's as if the positive qualities and countless
achievements are struck from history as a revisionist might strike the Holocaust. Into all of this the family court
system wades, often inelegantly. Divorce lawyers drive up the emotional and financial toll of separation and
transformation. Family and friends frequently collude to make things worse.
And when government decides to rear its head, well, it's a mess for all the world to see. Witness the recent
attention on Ontario's euphemistically branded Family Responsibility Office. A job in advertising doubtlessly
greeted the person who came up with its title, because it suggests some sort of feel-good missionary work to hold
together the sanctity of the institution.
Read More ..
