The memory alone can make Kim Jepson weep: the way he used to spring out of bed in the morning, kiss his wife Barbara goodbye, then rush into the office by 7:30, ready to put in a good day selling for a coffee wholesaler in a Toronto suburb. The Jepsons hoped for children, a nice house and long future together. But that was a decade ago, before Jepson, a hemophiliac, got a transfusion of blood containing hepatitis C that forced him to stop working and ended the couple’s modest, middle-class dreams. Now, they live in a Brampton, Ont., condo paid for by Jepson’s in-laws. A typical day includes watching television, dabbling with his computer, talking on the phone to the other members of his hepatitis C support group and, when he summons the energy, going grocery shopping. Most afternoons, the 46year-old sleeps, because the disease, which has no cure and takes the lives of as many as one in five victims, prevents him from being on his feet for more than 15 minutes at a time. “I just sit here,” he whispers in an emotionchoked voice, “waiting for the end.”
Until recently, tens of thousands of Canadians who share Jepson’s story were ignored in the glare of publicity focused on those who contracted HIV from tainted Red Cross blood.
That began to change last November, when Ontario Court of Appeal Justice Horace Krever tabled his report on one of Canada’s worst medical scandals. Krever not only revealed that hepatitis C victims outnumbered HIV sufferers 50 to one, he highlighted the fact that, unlike them, not one hepatitis C victim had ever received a cent in compensation. For the past four months, federal, provincial and territorial governments and the Canadian Red Cross Society have been struggling to respond to Krever’s call for relief for “all blood-injured persons.”
That relief may be at hand. A hepatitis C compensation offer— which federal Health Minister Allan Rock said on March 15 was “very close”—could be announced as early as this week. In the days before the announcement, the package was valued at about $1.1 billion—$800 million from the federal government and $300 million from the provinces and territories. But the hard-won agreement among the governments still would not compensate thousands who contracted hepatitis C. Moreover, billions of dollars in potential liabilities incurred by the bungling and negligence of Red Cross managers still stand in the way of Ottawa’s attempts to establish the new national blood supply system that Rock has promised to deliver by September. That $81-million undertaking is also challenged on another front—Quebec is threatening to establish its own supply system—even while eroding public confidence is being reflected in a drop-off in blood donations.
Late last week, negotiations towards an agreement on hepatitis C compensation still had some sticking points. A key question: whether settlements should be offered to those few hundred hepatitis C sufferers infected through sexual or maternal transmission. Virtually certain, though, is that the cash offer will be extended only to the 28,000 who, like Kim Jepson, contracted the disease during the 1986-1990 period, when blood donors were screened for the virus in the United States but not in Canada. The reason: this group of hepatitis C sufferers has the best chance of winning a court action. The offer, as a result, is expected to take the form of cash in exchange for an agreement not to sue. “Everything about this whole process smells of politics,” asserts Lindee David, executive director of the Canadian Hemophilia Society.
Such an offer would exclude the 22,000 people who contracted the disease before 1986 when no reliable blood screening was available. Earlier this month, those victims—along with people infected after 1990, who will also be left out of the government settlementlaunched a $3.8-billion class action suit against Ottawa, the provinces, territories, and the Red Cross. But government officials insist privately that they expect to be able to beat back those claims, and that the most the victims affected can expect is free drug treatments and other noncash assistance.
The total class action damages sought from governments and the Red Cross exceed $9 billion. Those claims may prevent health officials from meeting Rock’s September deadline. In order to get a new system off the ground, authorities need to acquire the 17 active Red Cross blood centres, their medical equipment and other assets that constitute the arteries of the existing supply system. But as long as the private agency faces billions of dollars in potential legal judgments, understandably it has no intention of transferring its only assets to government.
That is where the latest compensation package comes in. Maclean’s has learned that the Red Cross is comfortable enough with the general outlines of the hepatitis C offer—and how it thinks it will be received—that it has agreed in principle to ignore the liabilities question for now and sell its assets to the new agency for $100 million. Last week, chief Red Cross negotiator Bob Rae, the former Ontario premier, was travelling in China and unavailable. But other key players were ecstatic. “For this to work, we needed a smooth transfer of the Red Cross assets,” said a relieved Rock aide. “It’s a breakthrough for everyone involved.” Even the provinces, which had wanted to limit their contribution to the $1.6 billion they have already spent looking after the infected, seemed resigned to signing on.
Prospects of a settlement brought some relief last week to the small team of high-level officials and consultants installed in a cramped suite of Ottawa offices and charged with bringing the promised blood agency to life. An executive recruitment company is busily searching for a board of directors, a flock of vice-presidents and the chief executive officer who will ultimately be responsible for the new agency’s day-to-day operations.
But those operations remain months away—at best. Quebec’s government has complicated matters further by floating a proposal to opt out of the national blood system and create its own
A hepatitis C cash offer is ready—but hurdles remain
blood agency. That would fly in the face of Krever’s recommendation that a single national agency would be the best way to ensure a safe supply. Pressure to abandon the Quebec plan has been building from HIV and hepatitis C sufferers, worried it would lead to blood shortages. “Proponents are trying to show that Quebec will do everything similar to the Canadian blood agency,” says Russell Williams, a Liberal MNA who is vice-chairman of a bipartisan standing committee studying Quebec’s blood-distribution system. “Which begs the question: Then why aren’t we part of it?’ ” Last week, Quebec officials maintained they still had not decided whether to go it alone.
Even if Quebec signs up and the Red Cross settles, the new agency faces other challenges. The jury is still out on the question of just how independent a blood agency the provinces—responsible for funding the system’s operating costs—will permit. As one provincial health minister put it: “If this is going to be an arm’s length arrangement, let’s make it clear that it will be a very short arm.”
A more immediate concern is how to ensure the system has enough blood. Agency transition team members stress that a supply crisis is a long way off. Nevertheless, in 1997 the Red Cross collected just 882,670 units of blood, compared with 1.12 million units in 1984, the year before the tainted blood scandal tarnished its reputation. Even more worrisome are federal health department polls showing that one in four Canadians think they can be infected with HIV or hepatitis C merely by providing a blood donation (they cannot). ‘The big challenge,” stresses Michel Lemaire, communications adviser for Ottawa’s transition team, “is ensuring those who give and receive blood of the safety of the system.”
That assurance will be especially difficult to convey to the men and women who watched their lives unravel while the politicians and officials who were supposed to protect them argued. “We are innocent victims,” said Jepson, lamenting the years of wrangling that have delayed compensation. “How can they put us through this?” It is a question to which any answer sounds somehow hollow.
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