Date: Tue, 07 Jan 2003 16:38:16 -0000
Subject: [hepcan] `Broken promise'_Transcript_CBC National News


Broken promise

PETER MANSBRIDGE: Canada's tainted blood tragedy spawned a painful
legacy in this country. Every day tens of thousands of Canadians live
with the consequences. Understandably, most feel deep resentment but
for some there is also a sense of abandonment, especially among
people with Hepatitis C, those not eligible for compensation. Instead
they received a government promise of help. But now years later, they
say that vow is vacant. Here's Kelly Crowe with broken promise.

KELLY CROWE (Reporter): Moose Brook, Nova Scotia, perched on the
windy coast of the Bay of Fundy, it's a long way from the complicated
business of government up in Ottawa.

RITA LAFFIN: Here kitty, kitty, kitty, kitty, kitty, kitty, kitty,
kitty, kitty.

CROWE: All Rita Laffin needed was a new hip and 12 years ago she got
one, along with a blood transfusion. She didn't know it at the time,
but she also got something else. A virus - Hepatitis C.

LAFFIN: It's just getting worse and worse and worse. And I've just
almost ready to thrown in the sponge but I'm not going to because I'm
too contrary or something.

CROWE: Rita got Hepatitis C from her transfusion and doctors
recognized it soon after her surgery. But she couldn't start taking
the drug that might have cleared the virus from her body because she
just couldn't afford it. So her doctor told her to wait until she was
65 when she would qualify for help as a senior. She's angry about
that and even angrier that she's had no help from government with the
disease that Canada's blood supply gave her.

LAFFIN: I got a lovely hip out of it though. That was a, that was
God's blessing. I got something out of it but I wouldn't have traded
my life for that hip, I'm sure and that's just about what I did.

CROWE: Rita is one of thousands of Canadians who got sick from back
blood. During the 80's and early 90's more than 2,000 people were
infected with HIV and more 48,000 others infected with Hepatitis C.
Back then no one was screaming for either virus, even though there
were warnings from other countries that something might be
contaminating the blood supply. Justice Horace Krever spent four
years pouring over the details of what went wrong. He concluded he
was health care disaster that could've been prevented if blood
officials had paid more attention to the warning signs.

JUSTICE HORACE KREVER: ...that in my view, is reasonable.

CROWE: In these boxes, Krever's final volumes with 50
recommendations. At the top of the list, no fault compensation for
all the victims.

DURHANE WONG-REIGER: We are collectively the blood system in this
country.

CROWE: Durhane Wong-Reiger had been fighting for the victims of
tainted blood for years. And five years after the Krever inquiry,
she's still at it. This time as an executive of the National Blood
Safety Council. She's still hoping Justice Krever's first
recommendation will be honoured some day.

WONG-REIGER: What he asked for was a compassionate program that
people injured through no fault of their own, through the system,
then the system is in fact obligated to provide them with
compensation. The other thing that Krever said, of course, in terms
of no fault compensation was that it should include everybody and he
meant retroactively.

CROWE: At the time these were the faces of tainted blood. HIV victims
like Janet and Randy Connors. Ottawa ended up paying millions to
hemophiliacs and others who were infected with HIV, even compensating
their infected partners and children. The story of Hepatitis C was
almost lost in the shadow.

WONG-REIGER: And when we entered into that inquiry, our primary
interest was AIDS. It was not about Hepatitis C. In fact there were
some people who wondered why in fact we even have a representation
from Hepatitis C group in this inquiry. This has nothing to do with
Hepatitis C. Sure, there may be a few people that might have gotten
Hepatitis C but one, we didn't believe it was a terribly dreadful
disease and two, we had no evidence that there were very many cases
of it. Little did we know, of course, that this was actually the much
bigger disaster.

CROWE: A disaster that came out of ignorance. Today there are tests
like this one at Toronto's Mount Sinai Hospital that can spot the
virus in the blood. But back then, little was known about Hepatitis
C. Until a decade ago, it was known only as non-A, non-B. Still,
during the 80's, other countries were developing tests to find the
mystery virus. By 1986, the U.S. was testing for it. But Canada was
not. It was Wong-Reiger who dropped the bombshell at the inquiry. A
research report that showed while the U.S. was routinely screening
its blood, Canada was doing clinical trials of the tests.

WONG-REIGER: Sat down in a hotel room in Edmonton one day and started
to read it and my initial reaction was oh my God! What this really,
in my mind, was the smoking gun. It basically said we knew that there
was a risk. We knew that there was a safety measures taken. We, you
know, instead of acting on it, we decided to set up a clinical trial
and even after we got the results, we not only didn't act on it, we
told nobody.

CROWE: Even after testing began, no one understood that tens of
thousands of Canadians would suffer long term potentially fatal
damage to their livers. No one knew then what they know now, that
Hepatitis C is a viral time bomb that only reveals itself when it's
almost too late. Dr. Kevort Peltekian is a liver specialist at the QE
II Hospital in Halifax.

DR. KEVORT PELTEKIAN (QE II Hospital, Halifax): Hepatitis C is a
virus that gets into your blood and goes and lives in the liver. In
the liver, it damages it. It uses it to build up more of its health
kind of, but at the same time it damages the liver. Now, the trouble
with this whole system is that the liver does not give you as many
symptoms as other things do. With the liver, you have to have more
than 75 percent of it damaged before the liver announces that there's
a problem with it. Hello? Hi Neil. How are you doing?

NEIL: Good. How are you?

PELTEKIAN: How are things going?

NEIL: Pretty good.

CROWE: There is only one drug that can kill the virus, a powerful and
expensive Interferon compound. But if the patient doesn't get it in
time, or if the drug doesn't kill the strain of Hepatitis C they
have, they can end up with major liver damage.

PELTEKIAN: It damages the liver and then shows up with either
cirrhosis of the liver which is scarring of the liver, with liver
failure requiring liver transplantations often or even liver cancer.

UNIDENTIFIED WOMAN (1): I didn't know I had Hepatitis C but I would
get up in the morning tired.

CROWE: Without the knowledge of their disease and with the attention
paid to HIV, those who contracted Hepatitis from Canada's blood
supply had to file a lawsuit to fight for compensation. In the end,
Ottawa came up with a $1.2 billion package, but only for those who
could prove they were infected between 1986 and 1990 when Health
Canada admits it could've been screening the blood. Rita Laffin was
left out. Today she struggles to maintain her strength, her liver
ravaged by the virus she got from tainted blood. And she had one
final piece of bad luck. Her operation was two months too late, two
months after the cutoff day, the last day of June. To Rita, it seems
especially unfair because Health Canada is still warning that there
was a risk of infected blood as late as 1992, two years after Rita's
operation because it took that long for a reliable screening test.

LAFFIN: I was two months and 17 days too late. And I just don't think
that's fair. I'm sick as any of them, I guarantee and I'm sicker than
a lot of them. I don't, I don't regret any of the other ones getting
compensation but I just think that I should have some too. And I try
not to be bitter about it and sometimes I am a little bit, and
hateful about it. But anyway...

ALLAN ROCK: And look, it's not easy. We're human beings too. We're
human beings with families.

UNIDENTIFIED MAN (1): Tell my children, please, what your
responsibility towards them when they do not have a father.

UNIDENTIFIED MAN (2): And you should be ashamed.

ROCK: I've explained the rationale.

CROWE: Rita wasn't the only one left out of the compensation and
suddenly then Health Minister Allan Rock was under pressure to help
them too.

ROCK: All of us agree that's the approach...

CROWE: So he offered them a $300 million program called Care Not
Cash. They wouldn't get any compensation. Instead they would have
their out of pocket medical expenses paid for by the provinces from
the fund. With promises made to all the Hepatitis C sufferers, Ottawa
dusted off its hands and closed the victim compensation file for
good. Not quite Justice Krever's vision of an open, compassionate, no
fault compensation plan. Not even close. And now a full five years
later, still sick from the virus they got from bad blood, some say
they're not getting the help they were promised, not really getting
much help at all. In Nova Scotia, everyone with Hepatitis C
eventually ends up here. Dr. Peltekian is the only liver specialist
east of Montreal. He says his patients have a long list of out of
pocket expenses, especially for drugs that can cost up to $30,000 a
year.

PELTEKIAN: Some individuals delay their treatments. For others, what
we've done is we've encouraged them to get into research protocols
because when they get into research protocols, there's opportunity to
use, acquire the drug as part of the research protocol.

CROWE: Do you think there's patients out there who have not received
this life saving treatment because they can't pay for it?

PELTEKIAN: Oh yes. Absolutely yes.

LAFFIN: Not one red cent. Nothing.

CROWE: That's how much Rita Laffin has received from government. No
compensation. No money for out of pocket expenses. No help with
practical expenses such as house cleaning or a driver to get her to
the doctor. Just a few months ago, she got a cheque, $6,808, her
share of a separate Red Cross class action settlement, but there's
been no sign of the promised help for out of pocket expenses. Nova
Scotia is getting $6,000,000 for people like Rita - $300,000 every
year. Jamie Muir was the Minister in charge of the money. He directed
to the everyone with Hepatitis C no matter how they got it.

JAMIE MUIR: We don't have massive numbers and to try and set up
specialized programs for a select number of people is probably not
the most effective use of that limited amount of dollars that's
flowing from the federal government.

CROWE: We've also been told by your staff that it's gone into general
revenue for acute care services.

MUIR: Well if it goes into general revenue, I think the issue is not
how in terms of the provincial books it's accounted for. The issue is
is that, are other additional resources going into the care for
people who have Hep C and the answer is yes.

CROWE: At Health Canada in Ottawa, Dr. Paul Gully says the money is
not for everyone. It's only for people who got Hepatitis C from blood
outside the compensation window to make sure they don't have to pay
out of their pocket.

DR. PAUL GULLY (Health Canada): The spirit of the undertaking was
that the money should be spend specifically for those individuals who
had acquired Hepatitis C through blood and specifically to support
their medical care. That was the spirit and those were the words of
the undertaking agreement.

CROWE: In about four years, Nova Scotia will have to tell Ottawa what
it did with the money but Muir says he's not worried.

MUIR: Clearly our people in our department, we were very, very
conscious of this when we made this decision. We did it on, you know,
basically health reasons.

CROWE: Conscious of the fact that you were breaking Ottawa's terms.

MUIR: I don't think we are. Because when we decided to go in this
direction, I mean, like I'm sure all other jurisdictions do is that
we wanted to make sure we were living out the terms and conditions of
that, of the agreement with Ottawa and we believe that we are.

CROWE: But you know you're straining somewhat from the terms that
they set out.

MUIR: Well, I don't know if we strained from it. The issue was, is to
provide care and treatment for people infected outside the window
period. We are doing that. we've been able to enhance the service
because of, we've got this additional $300,000 annually for 20 years
from Ottawa.

GULLY: We would expect as with any agreement is that the provinces
and territories, the signatures of the agreement would abide by the
spirit of that agreement. If in fact it was demonstrated after the
five year report that they did not live by the spirit of the
agreement and in fact in the meantime if there was evidence brought
forward, information brought forward to show that they had not done
that, then in fact Health Canada would, you know, look at that and
then consider, consider what it should do next.

CROWE: At the Blood Safety Conference in Toronto, Hepatitis C victims
from across Canada who were infected outside the compensation window
say they have not yet seen any sign of the Care Not Cash money
either.

VICKY BODY: They've had all this money since 1999 and none of us has
seen it. But now, okay, where is it?

CROWE: Vicky Body is from Alberta. She says she hasn't had any
government help even though she got Hepatitis C during surgery back
in 1984 and even though the illness has destroyed her accounting
career and forced her into financial ruins.

BODY: We have got, we've lost all our savings, all our retirement
income. We lost our house. We've had to file for bankruptcy twice.
And this probably sounds awful but I hope I'm dead before I have to
file it a third, I don't want to have to go through it a third time.
So if there is a Care Not Cash program, where is it? And why aren't
we benefiting from it? We're supposed to.

CROWE: For Vicky, it's bad enough she was infected two years too
early to qualify for compensation but to top it off, she says, her
disease isn't taken seriously.

BODY: I don't believe I got the right disease from the blood system.
If I had AIDS, people would be falling all over themselves to help
me. (LAUGHS) Since I have Hep C, they're not.

CROWE: Susan White also got Hepatitis C from blood, also outside the
compensation window. She's from British Columbia and she says she's
not seen the Care Not Cash money in her province either.

SUSAN WHITE: We haven't seen any of it. I've been turned down. I was
very, very sick and I was prescribed a homemaker, nutritional
supplements, vitamin supplements, bottled water and I was turned down
for all of them. And you know, my story isn't uncommon.

CROWE: This is how the Care Not Cash money is being spent across the
country. B.C., Alberta, Saskatchewan and most of the Atlantic
provinces and territories have put it into general health care
revenue. Manitoba is using it for general Hepatitis C programs.
Ontario is still deciding what to do. Quebec hasn't signed on. So
across Canada, the money is not being spent the way Ottawa promised.

WONG-REIGER: We have not gotten any provinces give us an accounting
of what they've done with those monies and there's very little
visible signs of programs and care and support for people with
Hepatitis C that has come out of those monies, even though all the
provinces have been given their share.

CROWE: Scott Heming was infected with Hepatitis C during dental
surgery right in the middle of the compensation window. That means
Ottawa admits it probably messed up in his case so he qualifies for
cash. But he says his compensation package pales compared to the one
for blood victims with HIV.

SCOTT HEMING: When they established the compensation package for HIV,
everyone got one lump sum. Everybody got the same package. They
didn't ask were you in intensive care? Right? They didn't ask are you
able to walk? Right? They didn't ask how many dependents do you have?
They simply established a package that was fair and equal for
everyone. And they should've done the exact same thing with Hepatitis
C.

CROWE: So far Scott has received $60,000 from the compensation fund.
If he wants more money, he has to prove he's getting sicker. And that
means a liver biopsy. It's dangerous for a hemophiliac like him and
he says it's not worth the risk. He thinks Ottawa should divide the
fund among all the blood victims with Hepatitis C no matter when they
were infected, especially with so much money sitting there unclaimed.

HEMING: There's $800 million still sitting of the taxpayers money.
This is taxpayers money that are sitting in a fund that support
administrators, lawyers. It was never paid out to the victims. That's
still sitting there, three years, four years later. It's still there.
This is taxpayers money. The Canadian taxpayers paid that. Pay it out
to the victims. The people outside of the window deserve compensation
as well. They got it at no fault of their own.

CROWE: Rita Laffin knows that the whole tainted blood story is back
in the news with four people now facing criminal charges. Still,
Ottawa says the case for compensation is closed. Rita is on her own.

LAFFIN: If I get anymore, I'll accept it with thanks. And if they
don't, well I'll get along without it. I'll have to. I had all the
faith in the world in Justice Krever. And I just knew he was going to
do the right thing and the man did. It's just that the other guys
didn't.

CROWE: For The National, I'm Kelly Crowe in Moose Brook, Nova Scotia.