D’ARCY JENISH May 3 1993



D’ARCY JENISH May 3 1993



As he peels off his equipment in the crowded, noisy dressing room, 13-year-old Ryan McSkimming of Burlington, Ont., looks like any other young hockey player in the country. He has sweat on his brow, a smile on his face, and he dreams of some day being another Mario Lemieux. While his fantasy may be commonplace, McSkimming’s past is far from ordinary. The energetic teenager was bom with a life-threatening heart defect and when he was four days old, underwent successful open-heart surgery at Toronto’s Hospital for Sick Children. But McSkimming and his mother Diane, 39, have received jolting news about the blood he received during his operation. In a statement on April 15, the hospital said that 1,700 young people who had heart surgery between 1978 and 1985 should be tested for the human immunodeficiency vims (HIV), which causes AIDS. It is possible, the hospital said, that they received contaminated blood transfusions. Said Diane McSkimming, who never considered that her son might be at risk: “I’ve

calmed down a bit, but I was devastated.”

With that announcement, the hospital— where doctors have pioneered medical and surgical techniques now followed worldwide—became the first in Canada to begin notifying former patients that they may have received contaminated blood. Dr. Susan King, assistant director of the hospital’s HIVAIDS comprehensive care program, said that the hospital realized in the mid-1980s that some patients may have been infected but decided to rely on public announcements to alert parents of the potential problem. She said that late last year, after a number of calls from worried parents, the hospital’s medical advisory board agreed to launch a formal notification program. However, officials at several leading hospitals across Canada said that they were undecided about adopting a similar program. Some said that it may be unwarranted because they rarely get patients with transfusion-related HIV, or because finding patients years after treatment would be difficult, if not impossible.

The Canadian Red Cross Society, which

collects and distributes blood from volunteers, began testing it for the presence of HIV in November, 1985. And according to the federal Laboratory Centre for Disease Control, 300 adults and 14 children in Canada had developed AIDS by January this year as a result of tainted blood. Of those, 227, all adults, had died. The Red Cross now is facing about 100 lawsuits by the recipients of tainted blood or their survivors. Meanwhile, an allparty parliamentary subcommittee concluded public hearings last month into the overall management of the nation’s blood supply and is due to report in May. Said chairman Stanley Wilbee, a doctor: “A lot of people are saying we could resolve this if we had a judicial inquiry and laid the blame where it belongs.” Although the Sick Kids announcement focused attention on conventional transfusions, hemophiliacs have been hardest hit by HIV contamination. Robert St. Pierre, HIV program co-ordinator for the Montrealbased Canadian Hemophilia Society, said that 1,100 of the country’s 2,300 hemophiliacs contracted HIV through transfusions.

For Canadians infected with HIV from tainted blood, the shock has haunted their lives ever since. Toronto resident Marlene Freise, a 46-year-old mother of two children, had a transfusion for anemia at the city’s Mount Sinai Hospital in 1982. But she only discovered that she had the virus in January, 1991, when she and her husband had medical examinations for life insurance. “For the first month, I thought I would die at any moment,” said Freise. “Just getting through the day felt like an achievement. We were living in a fog.”

When the shock began to subside, she faced a disturbing question: why hadn’t the Red Cross—or the hospital—told her that she might have had tainted blood? She claims that neither organization provided answers so she and her husband filed a lawsuit against the Red Cross for negligence and against the hospital for breach of an implied contract. “In 11 years, I have not heard one word from the Red Cross or the hospital or anybody,” said Freise.

In the first tainted-blood lawsuit to reach a

Canadian court, the family of former Toronto retailing employee Kenneth Pittman is suing their former physician, Dr. Stanley Bain, the Red Cross and Toronto Hospital for almost $2.1 million. Pittman died in March, 1990, at age 58 from complications related to AIDS. He had contracted HIV in a blood transfusion at Toronto Hospital in 1984. According to testimony, the hospital told Bain in April, 1989, that Pittman had received tainted blood but the physician did not tell his patient, and Pittman’s wife, Rochelle, also became infected. Last January, the College of Physicians and Surgeons of Ontario found Bain guilty on two counts of professional misconduct for failing to notify Pittman and later suspended his medical licence for two months. In the civil suit, Pittman’s son Thomas, a Nova Scotia lawyer, has testified that Bain only agreed to give his father an AIDS test two days before his death, after being questioned by family members about the nature of their father’s illness.

Other groups are considering legal action. In Kitchener, Ont., members of Special Hearts, a support group established in 1987 for parents of children born with major heart defects, criticized the Hospital for Sick Children for waiting so long to tell parents of the possible HIV peril. Combined, the parents have 20 children, aged 7 to 18, who underwent surgery requiring transfusions at the hospital between January, 1980, and November, 1985. Some members of the group have consulted Kitchener lawyer Simon Adler. Said Adler: “Basically, there seems to have been a very heartless attempt to avoid an issue they knew was of serious concern as early as 1983.”

The Hospital for Sick Children defends its

actions on the grounds that, initially at least, there was no compelling reason to warn all the parents. King said that 17,000 children received blood transfusions at the hospital between the late 1970s and November,

1985. Of those, 20 are known to have contracted HIV, at least two have died and another three have developed AIDS.

King said that the hospital is still not directly notifying all those who received transfusions. But because the oldest of the patients are now capable of transmitting HIV through sexual activity, she said, it has decided to contact physicians of the 1,700 children who received transfusions while un-

dergoing open heart surgery—a high-risk group—and ask them to alert the parents. Children who underwent heart surgery, she said, received larger volumes of blood than other patients, and the blood frequently came from more than one donor. The risk of having contracted HIV through blood transfusions has been estimated by some medical authorities as one in 1,400; others put the odds at one in 10,000.

As early as March, 1983, the Red Cross issued public advisories urging members of high-risk groups, such as those diagnosed with AIDS and sexually active homosexual men, not to give blood. In March, 1985, the U.S. Food and Drug Administration approved the first commercial kits for mass HIV testing of donated blood and by November that equipment was in use at all Red Cross centres across Canada.

In the beginning, King said, provincial health ministries, hospitals and the Red Cross appeared to share the view that notifying people who had received transfusions prior to November, 1985, would be of little value since most doctors believed that a person infected with HIV would develop AIDS within two years and die quickly. Because of the lack of computerized records to track the movement of donated blood, many doctors and hospital administrators believed that by the time doctors had reached thousands of transfusion recipients and tested them for HIV, those who had contracted AIDS through tainted blood would either be dying or dead. “Everyone thought why cause a person a lot of anxiety when you can’t do anything to help him?” King said.

Since then, however, medical advances have led to a better understanding of HIV and its role in triggering the collapse of the immune system and the onset of full-blown AIDS. Medical advances have also led to improved treatment. King said that people infected with HIV frequently remain healthy for 10 years or longer. Doctors now can treat some secondary AIDS-related infections and

improve the patient’s quality of life. Yet the longer than expected lifespans of young people infected with HIV has created another problem, King said— the potential to infect others through sexual activity. King said that over the past couple of years the hospital began getting calls from AIDS-conscious parents whose children had had transfusions at one time or another. She said that in order to respond to those parental concerns in a consistent manner, the hospital’s medical advisory committee decided to launch the notification program.

So far, no other hospitals are following Sick Children’s example. James Rodger, assistant to the president of the Health Sciences Centre in Winnipeg, one of the largest hospitals in the Prairie provinces, said that at-

tempting to contact recipients of blood transfusions would be an administrative nightmare. The hospital, he said, would have to sift through records to find out who among the 500,000 to one million patients admitted between 1978 and 1985 had received transfusions. “It verges on being an administrative impossibility,” said Rodger. The Toronto announcement, he added, “created a storm

down east but we’ve had one phone call on it.” Doctors at some major hospitals in other parts of the country said that they first want to see the results of the Sick Children’s program before considering a complex and costly notification program. Dr. John LeBlanc, a pediatrician at the Isaak Walton

Killam Children’s Hospital in Halifax, said that the hospital has not had a single case of transfusion-related HIV in the past five years. He added that only about 11 cases, three of them children, were diagnosed in Nova Scotia between 1985 and 1987. In Vancouver, Dr. John Forbes, director of the HIV care unit at the B.C. Children’s Hospital, said that 7,000 youngsters received blood transfusions

there between mid-1982 and 1985. None had returned with HIV or AIDS-related symptoms, said Forbes.

In Ottawa, the Children’s Hospital of Eastern Ontario received about 80 telephone calls in the first five days after it set up a hotline following the Sick Children’s an-

nouncement. Dr. Robert Peterson, chief of the hospital’s pediatrics department, said that the hospital has offered HIV testing since 1986 to patients who have received numerous transfusions due to chronic illness but has discovered fewer than a dozen cases.

The response of the healthcare industry generally has been to try to reduce public anxiety by claiming that Canada’s supply of donated blood is among the safest in the world. The Red Cross says that it now tests every unit for the presence of disease agents, including HIV, syphilis and hepatitis. Many doctors contend that the risk of developing AIDS remains extremely low even for those who received transfusions before testing was started in 1985. However, McSkimming is not

reassured. She said that she endured several anxiety-filled days after Sick Kids announced its notification program and then decided to have her son examined. Now, she says, no matter how remote the chance that Ryan may develop AIDS, an illness that is almost always fatal, she has been badly frightened.



in Toronto