PHILL SNEL/MACLEAN’S PHOTO VIA THE CANADIAN PRESS

 

This was the second article of the two-part series “Bad Blood: A life sentence,” originally published on Nov. 19, 1992. Part one is available here.

The tale lives on in AIDS lore as the time Donald Francis got angry.

It was Jan. 3, 1983, several months after experts in the United States first realized that the fatal disease could be transmitted through blood transfusions.

The auditorium at the Centers for Disease Control in Atlanta was full: Just about everyone who was anyone in the blood-bank business was there.

As the meeting began, blood-industry representatives expressed widespread disbelief that anyone could get AIDS through a transfusion.

That’s when Mr. Francis got angry.

Pounding the table, the mercurial co-ordinator of the AIDS laboratory at the CDC shouted: “How many people have to die? How many deaths do you need? Give us the threshold of death that you need in order to believe that this is happening, and we’ll meet at that time and we can start doing something.”

Shortly afterward, the industry took its first, halting steps – not without omissions and mistakes – to protect the country’s blood supply from the spectre of AIDS.

Unfortunately, there was no catalyst like Donald Francis in Canada.

Confronted by a disease that seemed to come from Mars, that seemed impossible to comprehend, that threatened every assurance they had ever given the public, blood officials in Canada fell back far too long on denial. Over and over again, they declared there was no proof linking any AIDS cases to Canada’s blood supply.

And when a blood test for the AIDS virus became available, and denial was no longer acceptable, Canadian officials dithered. It took an astonishing eight months – from March to November, 1985 – before Canada managed to follow the United States and implement its own nation-wide blood-screening program.

Each month of that delay was a death sentence for six or seven Canadians, stricken with the AIDS virus after receiving blood transfusions the Red Cross assured them were safe.

A recent report for Health and Welfare Canada found that at least 50 Canadians contracted the fatal virus from transfusions during the eight-month time gap.

In total, 261 people in Canada are known to have been infected through contaminated transfusions, but only two of those were infected after screening began. The figures do not include more than 700 hemophiliacs infected through contaminated blood concentrates.

“I don’t think they [Canadian blood officials] wanted to believe how horrible it could be,” said one participant in decision making who tried unsuccessfully to speed matters up.

“It undermined everything they stood for. I was looked on as a prophet of doom when I asked how many deaths were needed before they would take action.

“There was just flat denial. People were just very conservative. Looking back, some of those things they did were just crazy,” the participant said.

In the first five years that AIDS was spreading, the response by Canadian blood officials, both from the Red Cross and from governments, was characterized by a failure to act decisively.

Rarely was there a sense of urgency. Efforts often bogged down in a bureaucratic swamp. Fiefdoms were protected. Officials worried that they would worry the public with their worries. Some gay activists lobbied effectively against blood-protection measures that singled out homosexual men.

The clear vision of hindsight shows that all these factors combined to produce tragic consequences.

“At the time, nobody saw AIDS as a pandemic,” Red Cross spokeswoman Rita Cloghesy said in a recent interview. “In hindsight, you can now say people were dealing with the tip of the iceberg. But people thought screening was just a medical question, not a pandemic. There may not have been that sense of urgency. No one saw the red light.”

The pattern was set the first time the suggestion was raised that someone could get AIDS from blood donated in Canada.

Artibano Milito, a young hemophiliac mill worker from northern British Columbia, died of AIDS on March 31, 1983. Red Cross officials rejected any suggestion that he could have become infected through blood products used to treat his hemophilia. There were whispers, never directly attributed to the Red Cross, that he must have been gay.

“That’s why I was hired,” recalls Vancouver lawyer Craig Paterson, who pressed for an inquest into Mr. Milito’s death. “His family was Roman Catholic and they didn’t appreciate those rumours. This was one of the first cases of transfusion AIDS to come to light.”

Mr. Paterson said the Red Cross’s denial of a link between the blood supply and Mr. Milito’s death was total. “Everything was stoutly denied. They issued press releases saying there was no connection.

“They were totally, absolutely defensive and negative to any suggestion of a tainted blood supply. They took the view there was no proof,” Mr. Paterson said.

Although Canadian Red Cross officials followed the lead of U.S. blood agencies in 1983 and publicly asked individuals associated with groups where high risk of AIDS infection had been noticed (sexually promiscuous homosexuals, intravenous drug abusers, Haitians) not to donate blood, many believe the campaign was half-hearted.

Gay men were not excluded from giving blood, just those who had multiple partners. A questionnaire to be filled out by prospective donors contained no specific question about AIDS symptoms, although eight other diseases were mentioned.

“It’s a delicate issue,” said Noel Buskard, who was Red Cross medical director in B.C. at the time. “We have a devoted donor population and we don’t want to harm [it].”

Information brochures outlining donation guidelines were issued but not, apparently, widely distributed by the Red Cross.

Robert O’Neill, then executive director of the Ontario chapter of the Canadian Hemophilia Society, reported that he gave blood several times in Toronto during 1985.

The first time he saw nothing that suggested that high-risk donors should not give blood. On a second occasion, he happened to notice a brochure on a table in the rest area after he donated.

When Mr. O’Neill subsequently suggested to a Red Cross director that self-exclusion guidelines should be better publicized, the director said the campaign was deliberately kept low-key because of the fear that potential donors might think they could catch AIDS from giving blood.

Unlike the United States and many other countries, which pay donors for blood, Canada’s blood-collection system continues to rely entirely on volunteer donations.

“The people in the Canadian Red Cross really worry about their donors. They’re always worried about keeping them happy, not driving them away,” one official said.

“That’s very deep in the ethic of this group, and that kind of thinking drove them until well into 1987.”

Kenneth Arenson, a Toronto lawyer handling a number of lawsuits on behalf of people who contracted the AIDS virus from blood transfusions or blood products, said he knows of one gay man who donated blood every three months for years until he stopped in 1984.

“By 1983, he had had sex with about 1,000 men, but he was never told then not to give blood. He didn’t see it in any brochure,” said Mr. Arenson.

“He’s said that he felt he was giving the gift of life, and that if he’d read anywhere that homosexuals with multiple partners shouldn’t donate blood he certainly would have deferred himself.”

Mr. Arenson said he knows of 32 blood donations the man, who did carry the AIDS virus, made in Toronto before moving to Montreal.

NOT until May 9, 1985, did officials of the Canadian Red Cross acknowledge that its blood supply was contaminated with the AIDS virus.

The acknowledgment followed the AIDS deaths earlier that year of two B.C. patients who had received transfusions during operations.

“We have taken all the precautions that we could,” John Derrick, adviser to the national director of blood transfusion services, told reporters. “It certainly appears that the inevitable has happened.”

Other officials went on to stress, however, that Canada’s blood supply was still safe. In reality, 1985 turned out to be heaviest year for AIDS infections from blood transfusions in Canada: At least 75 cases were reported.

The eight-month delay that year in implementing a program to test all donated blood for antibodies indicating the presence of the AIDS virus provokes the harshest criticisms of the decision makers.

“They couldn’t make a decision. You see it over and over again,” said Mr. Arenson. “Why were the Americans able to make a decision six or eight months earlier? It doesn’t add up.”

Unlike the circumstances in France, where public officials have been sentenced to jail for criminal negligence in distributing AIDS-contaminated blood, there was no deliberate policy in Canada to delay blood testing, or needlessly to expose transfusion patients to danger.

Rather, the story is one of a country without a national blood policy, with a cumbersome blood bureaucracy and with too many officials who failed to appreciate the urgency of the forceful steps that were necessary.

“My recollection is that people knew what had to be done, but it wasn’t, like, ‘You’re killing somebody if you don’t do something right away,’ ” said Stanley Read, an AIDS-virus specialist at the Hospital for Sick Children in Toronto.

Ever since the identification in 1984 of the human immunodeficiency virus, which causes AIDS, researchers had been working hard to devise a test that could be used to determine whether the virus was present in a person’s blood.

On March 2, 1985, the U.S. Food and Drug Agency approved a test for public use. Right away, U.S. blood banks began routinely using it to screen all donated blood for the virus.

In Canada, reaction to the U.S. announcement was cautious, if not hostile.

In fairness to those confronted with decisions at the time, the number of people with AIDS in Canada was still small, and there was a very imperfect understanding of the connection between testing positive for the presence of HIV antibodies and development of full-blown AIDS. Many believed there was only a 5 to 10 per cent chance that an HIV-positive individual eventually would come down with AIDS. Now it is generally accepted that the presence of HIV inevitably leads to AIDS.

The day after the U.S. announcement, a spokesman for the AIDS Committee of Toronto, an advocacy and support group, said the test should be avoided because it would only foster fear and hysteria among those who test positive.

“People don’t realize this test is not diagnostic. It’s just not worth it in terms of the fear it will spread,” the spokesman said.

Roger Perrault, national director of the Red Cross blood transfusion service, agreed. Dr. Perrault said the accuracy of the test was questionable and there were no confirmed cases of AIDS resulting from blood transfusions in Canada.

But someone was paying attention. Five days later, the federal government’s national advisory committee on AIDS asked the Red Cross to prepare a plan to implement HIV-antibody testing of all blood donations.

It took until May 15 – more than two months – for the Red Cross to devise its screening program. The organization hoped to have it in effect by the end of the summer.

However, there were two worries.

The agency insisted that provinces have similar AIDS-testing facilities available for members of the public, so that people at high risk wouldn’t use the Red Cross screening program as a way to determine their HIV status.

The agency also wanted money. Until there was a secure commitment from all 10 provinces to meet the estimated $5.5-million startup costs, there would be no Red Cross screening program.

That brought the proposal into the bureaucratic clutches of the Canadian Blood Committee, an oddly structured body that many blame for the delay in nation-wide screening.

The committee consisted of civil servants, one from each province and territory and one from the federal government, with a full-time executive director. It was established in 1982 – over the objections of the Red Cross – to represent the interests of all provincial health ministries in the direction and management of the Canadian blood system.

Most Red Cross operations were funded through the committee, with each province picking up a proportion of the Red Cross national budget. But the committee had no public-accountability mechanism because it was not established by legislation.

It discussed the Red Cross screening proposal and the extra money required at a meeting in St. John’s in early June, but did not approve the program. Instead, committee representatives said they needed more time to consult with their health ministries.

The blood committee’s executive director, Denise Leclerc-Chevalier, told the Red Cross to expect an answer by June 30.

Postponements of meetings and other procedural delays intervened, and it was not until Aug. 1, two months after the meeting in St. John’s, that the committee assured the Red Cross it would get money for testing.

The last province to agree to its financial share was the country’s biggest, Ontario, a province then consumed by political turmoil.

During the first six months of 1985, Ontario had four different health ministers (Conservatives Keith Norton, Philip Andrewes and Alan Pope, and Liberal Murray Elston), as the province went from a majority Conservative government to a minority Conservative government and then to a minority Liberal government.

“Ontario was in complete disarray,” said one source who was involved in the issue at the time. “When people are going in and out of office, things tend not to get done. Whatever the specific cause, it [quick funding approval] didn’t get done.”

Veteran Ontario bureaucrat Eugene LeBlanc said: “Rapid turnover of ministers tends to make decision making more difficult. It tends to produce a hiatus.”

Stephen Dreezer, the province’s representative on the committee in 1985, rejects the allegation of turmoil. “Business was transacted more or less as usual,” said Mr. Dreezer, now a private consultant. “Ministers may come and go, but the issues still carry on.”

Mr. Elston said he has no detailed recollection of approving money for the Red Cross screening program. “A secure blood supply. I can remember it as an issue, but that’s all. I don’t recall anyone saying we were dragging our feet.”

Mr. Dreezer defended the committee’s go-slow approach. “You can do things in a week and screw it up,” he said. “We had to decide what was best for Canada. There’s a big danger in looking south of the border and totally accepting whatever they do down there.

“We were concerned about the accuracy of the testing, the number of false negatives. And do you tell people if their blood is infected,” said Mr. Dreezer.

“Even if we did make the wrong decision, it’s easy to look back and say everything would have been all right if we’d only done it this way. We don’t know that for sure. It could have been worse.”

A confidential report compiled by the Canadian Hemophilia Society for the federal government in 1988 called the Canadian blood industry an “administrative hodgepodge which was inefficient at a time when corrective and assertive action was clearly warranted.

“The overall impression left is that of a blood system administered by a hydra, none of whose heads are connected to the others,” the report said.

Wayne Sullivan, Nova Scotia’s representative on the committee in 1985, said the committee could make decisions as quickly as it wanted to, without outside interference.

Asked whether the committee did act as swiftly as the situation warranted, Dr. Sullivan responded: “I really can’t comment on that.”

After the Aug. 1 approval of the program and budget, the Red Cross spent the next few months training its staff for the new screening duties.

Although some blood centres were testing blood for HIV as early as September, the nation-wide program was not fully launched until Nov. 1.

Even at the time, Canada’s slow response to the U.S. blood-testing program drew heavy fire.

A letter to the committee from the Canadian Society of Clinical Chemists called for a “high-level review” of the delay.

“It could be argued that this delay put all Canadians to a significant and higher risk of exposure to the AIDS virus, and threatened the voluntary donor system as serious public concerns were raised during this period as to the safety of the blood supply,” the letter said.

The Ontario chapter of the Canadian Hemophilia Society and the Medical Post, a widely read weekly publication, also urged an inquiry.

A Medical Post editorial in August of 1985 noted that committee meetings were sometimes postponed and argued that the federal government could have stepped in to provide the Red Cross with interim financing while the provinces hemmed and hawed. The editorial also said the Red Cross should have put up “a stiffer fight” for quick funding.

Red Cross officials insist that there was no delay on their part, that they responded immediately to the U.S. announcement. But critics wonder why there was no plan prepared, ready to go, the moment testing was approved in the United States.

Gail Rock, who was director of Ottawa’s blood centre in 1985, told a reporter in 1990 that Red Cross management ignored warnings from its medical directors about the risk of AIDS-contaminated blood.

“Until (they) finally began testing for the virus, there was tremendous effort to resist suggestions about the threat of AIDS in blood,” said Dr. Rock, who is suing the Red Cross over her dismissal in 1988 after 14 years on the job.

“Management did not go to the government earlier with a request for funding because they were convinced and articulated constantly to all of us in the field that ‘there is no proven evidence that it is transmitted by blood transfusion.’ ” Today, seven years later, there is widespread agreement that Canada’s blood supply is as safe as any in the world. At least five cases of AIDS infection have been confirmed from the millions of transfusions provided since November, 1985.

Not only is blood laboratory-tested, but prospective donors are put through a far more rigorous screening process before being allowed to donate.

“As we have learned, there’s been a progressive improvement in our procedures,” said Roslyn Herst, medical director of the country’s largest blood centre, located in Toronto.

The Canadian Blood Committee has been replaced by a much more streamlined organization with teeth, the Canadian Blood Agency. The agency, incorporated in 1991, can be sued and has the ability to enter into supply contracts.

All this means the organization can move quickly when it needs to, executive director William Dobson says.

“As a corporation, we’ve negotiated a line of credit with our bank. If I need to respond to an emergency, I can make a few phone calls, borrow the money and that’ll be that.”

Mr. Dobson said everyone has learned lessons from the mistakes of the mid-1980s. “We’ve learned that you can have an infection passed through the blood system. Everyone has to be alert to that.

“I’ve written out a directional plan for us that will give us a much more powerful presence than the previous system. We are taking a very active role in the system.”

Meanwhile, scores of lawsuits have been filed alleging that Canadian blood officials were negligent in responding to the AIDS crisis, and claiming damages totalling more than $350-million.

No one is suggesting that there was criminal negligence or that a group of villains exist, but critics point out that many early suggestions to improve the security of Canadian blood were ignored.

Mr. Arenson, the Toronto lawyer, estimates that 75 per cent of Canada’s 261 transfusion victims might have been saved if blood officials had “only done what people told them to do.”

John Gill, a Calgary doctor who has worked closely with patients infected by HIV through transfusions, said: “This was certainly an avoidable tragedy. There were lots of bona fide experts about, who had great questions about everything that was suggested.

“It’s not that they were crooks or anything. But they were wrong.”

An official close to the decision-making process in 1985 said: “There’s no smoking gun. Everyone had the best of intentions. But they didn’t rise to the occasion. What we needed was a Winston Churchill. What we got was a lot of Neville Chamberlains.”

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Source: https://www.theglobeandmail.com/canada/article-from-the-archives-delay-in-testing-for-aids-cost-lives/