The tainted blood scandal – for those who have forgotten – is one of Canada's most shameful public health debacles. Between 1980 and 1990, more than 20,000 recipients of blood and blood products were infected with HIV and hepatitis C due to a series of administrative and political blunders and cover-ups. When the full story finally emerged and the lawsuits were settled, taxpayers were on the hook for billions of dollars in compensation.
While the tragedy as a whole offers many humbling public policy and political lessons, one specific aspect of the complex story is worth revisiting given current events.
In September 1998, the federal, provincial and territorial governments agreed to settle a class action lawsuit with Canadians who were infected with hepatitis C through transfusion of tainted blood or blood products between 1986 and 1990.
(There were other, separate, settlements paid to people who were infected with HIV-AIDS, as well a number of federal and provincial plans that offered payments on humanitarian grounds.)
The courts ordered governments to pay $1.18-billion to those who contracted HCV in that period, including covering the victims' medical costs that were not covered under medicare, such as prescription drug treatments, homecare and so on.
The hemophiliacs and transfusion recipients who were infected with HCV prior to 1986 and after 1990 – the "forgotten victims" of tainted blood – protested and won an additional settlement. Specifically, Ottawa promised them $300-million earmarked for treatment, a deal that was dubbed "care instead of cash."
In the subsequent years, the federal government signed a series of agreements with the provinces and territories for transfers of money. Like many federal-provincial deals, the terms were vague and the accountability was virtually non-existent, so it's hard to track the monies.
The exception is Ontario. In 2002, Ottawa signed a deal saying the province would receive $136.2-million (one-third of the care instead of cash funds) and that the federal funds were to be used for: "Health care services indicated for the treatment of hepatitis C infection, and medical conditions directly related to it, such as current and emerging antiviral drug therapies, immunization and nursing care."
The deal also included a clause saying the province had to report on how the money was being used every five years. The first report, in 2007, identified a number of issues. While researchers were able to identify roughly how much was spent on hepatitis C testing and treatment the province, it wasn't clear how many people infected with hepatitis C were actually infected by blood and blood products.
More important, and left unsaid in the technical analysis, was there was no indication whatsoever that tainted blood victims got treatment that was any different from any other patient.
In other words, the monies that were supposed to be used for the enhanced care and treatment of a group of people who were harmed by the state were simply absorbed into the health budget.
Stated bluntly, the victims of tainted blood were victimized again and we only know that because there is a modicum of transparency in Ontario. (And, incidentally, there does not appear to be a 2012 report, at least not one that's publicly accessible.)
So why is this relevant today, in 2015?
For a couple of reasons: First, there are some new hepatitis C treatments that are highly effective and quite expensive; and second, Ottawa has just made a settlement offer to victims of thalidomide (another gross failure of drug regulation) that contains "care instead of cash" provisions.
Let's start with the latter issue.
Three weeks ago, the federal government announced a $180-million compensation package for the 95 surviving victims of thalidomide. They were offered lump-sum payments of $125,000 each for a total of $12-million.
In addition, there was a vague promise of "up to $168-million" in medical assistance. What history tells us is that governments rarely, if ever, fulfil vague promises. What thalidomide victims must insist on, and what they deserve, is a legal agreement that spells out exactly what kind of medical assistance they will receive, over and above medicare.
Without that, the new deal is nothing more than another hollow promise.
Which brings us back to the victims of hepatitis C tainted blood.
There are new drugs that are the closest thing ever seen to a cure for hepatitis C. In clinical trials, cure rates hover above 95 per cent. But these drugs – Sovaldi and Harvoni from Gilead Sciences Inc. and Holkira Pak from AbbVie Canada – are expensive (in the range of $55,000) and not necessarily covered by public drug plans.
Tainted blood victims in the 1986 to 1990 settlement group had early and ready access to those drugs. But the pre-1986 and post-1990 victims have been left wanting.
There have been numerous examples in recent years, and in recent months in particular, of "forgotten victims" of tainted blood being forsaken again, despite the $300-million provinces received under the "care instead of cash" deal.
The provinces have recently struck a deal with the manufacturers to purchase these new hepatitis C treatments at a deep discount, and they will soon be included on formularies of public drug plans. But the key, and unresolved issue, is: "Who will be eligible for treatment?"
There are an estimated 242,500 Canadians with hepatitis C.
Realistically, they're not all going to get treatment immediately.
But what must be clear is that one group must take priority for access and treatment: The victims of tainted blood.
They have already been wronged and we shouldn't be adding insult to injury by continuing to withhold treatment to which they are legally and morally entitled.
André Picard is The Globe's public health columnist.