PEEBLES, Scotland – Robert Mackie trembles with rage when he describes how he and his wife were kept in the dark about his HIV infection — and how doctors published his medical data in journals years before they gave him the devastating news.
Mackie is one of some 5,700 British hemophiliacs who received tainted blood and were infected with HIV, hepatitis or both, in what has been viewed as one of the worst treatment disasters in the history of Britain's heath care system. Nearly a third of those infected have since died.
Tainted blood scandals have been investigated throughout the world — in France, Canada, Japan and elsewhere — leading to some convictions of health officials and many compensation packages for infected hemophiliacs, but there has been no detailed probe in Britain until now. One inquiry under way will likely end in a nonbinding report, while the other is an official investigation by the Scottish government that could lead to charges filed against individuals.
"They used me as a guinea pig," said Mackie, 58, in his house in Scotland. "It's just a miracle my wife wasn't infected."
Hemophiliacs suffer from an inherited disorder that prevents blood from clotting. Mackie — an active sportsman who had hoped to become a salmon fishing guide — had controlled his hemophilia with a treatment called cryoprecipitate when he switched in 1980 to a new product. Called Factor VIII, it was supposed to be more effective in helping his blood clot.
In 1983, he heard hemophiliacs were developing AIDS, then a mysterious disease that usually claimed its victims in two or three years.
He said he asked his doctors if he could be exposed to the killer virus through his use of Factor VIII, a relatively new blood plasma product made from blood collected from thousands of donors.
They told him not to worry. A year later, he was infected by a contaminated batch.
"We could have had more of a family," says Alice Mackie, who had a son with Robert before he became infected. "The two of us had plans for what we were going to do. But you could say our whole lives stopped."
The tainted blood led to the deaths of Mackie's cousin, two uncles and friends, who were part of a close-knit community of hemophiliacs in Scotland.
"From '87, all we saw was people dying," said Alice, her hair white at 51. "And believe me, when you see someone dying of AIDS, it's really bad. It's different each time. No one dies the same way."
Mackie said he was told of his infection in 1987. But he told an independent inquiry commission that when he finally obtained his medical records, he learned he had been used for an AIDS study that began several years before then.
"This AIDS study was, it seems, the beginning of many years of research being carried out on me without my knowledge or consent," he told the inquiry committee headed by Lord Archer, a former solicitor general.
Factor VIII was meant to thicken blood so that it would clot properly, and Mackie was told it was a breakthrough when he got his first treatment in 1980.
But the risks were high. With each dose, blood plasma from thousands of donors was introduced into his system. Between 2,500 to 22,000 donors contributed to each batch of Factor VIII, which could then treat about 100 patients.
The contamination risk increased as the number of donors grew, but it was only once AIDS emerged as a global public health threat that doctors learned how great that risk was.
By 1983, U.S. medical experts had established that AIDS — previously concentrated among gay men — was striking hemophiliacs.
In April 1983, an American doctor wrote in The Lancet medical journal asking for data on hemophiliacs in areas where there was no reported HIV in the blood donor community.
The journal published a response one month later — from Mackie's physician, Dr. Christopher Ludlam.
In the letter, published on May 28, 1983, Ludlam described his own patients as a valuable resource for further study because Scotland produced its own Factor VIII and seemed to have an AIDS-free donor community.
Mackie said that in 1985 — when he was already infected but didn't know it — Ludlam wrote to government authorities seeking ethics approval to study the immune system of infected patients and claimed that his patients knew about the research and had agreed to participate.
"If, as the ethics application form states, consent was obtained from all subjects ... how is it that I did not know about my AIDS status until 1987?" he said at the hearing. "I did not know anything about his studies or research."
Mackie obtained copies of the form submitted by Ludlam in which the doctor says his patients were well informed about his studies.
Ludlam, who practices at the Royal Infirmary of Edinburgh, declined to talk with The Associated Press about the case.
Brian Montgomery, a National Health Service executive who oversees the hospital, said it would be "inappropriate" to comment while the inquiries are ongoing.
Two of Mackie's uncles and a cousin were also hemophiliacs under Ludlam's care. They learned they had been infected around the same time. All three succumbed fairly quickly. The family held three funerals in two years.
Mackie was convinced he would be next.
Surprisingly, he stayed relatively healthy for a decade. He thought he had escaped a death sentence, but in 1997 his appetite began to wane. By 2000, he had advanced symptoms of AIDS.
He became too weak to climb stairs. The smell of food sickened him. Doctors said he had a few weeks left, but he was too stubborn, and too suspicious about doctors, to take the new anti-retroviral drugs that were by then extending the lives of many AIDS patients.
For days he sat, feverish, in his kitchen, believing death was imminent.
Then, drawing on reserves he did not know he possessed, his fighting spirit returned. He gave in to Alice's pleas and started to take the new drugs after she convinced him they were not poison.
The drugs worked. Mackie said they at first caused a dangerous reaction that left him "out of his head" but eventually gave him more energy and confidence.
Despite being weak from AIDS and Hepatitis C, which he found out he had in 2000, Mackie insisted on giving evidence to the Archer committee last year. The hearings were closed to the public but a report is expected next month.
Alice read most of his statement, and he spoke quietly when he spoke at all, but he did raise his voice at one point to tell the committee that doctors had endangered the safety of his wife and son by holding back his HIV status.
"I believe nonconsensual research was conducted by doctors of hemophilia in this country," he said, voice booming again. "We were all used as lab rats."
The Mackies say they are not expecting much from the new investigations.
But Andrew March, a hemophiliac in London who became HIV positive when he was nine after exposure to tainted blood plasma products, said the surviving victims want the truth to finally be told.
"I feel anger a lot of the time," said March, who is now 34 and generally free of AIDS symptoms. "Frustration. A sense of being repeatedly betrayed. There are lessons to be learned that haven't been learned yet."
He said the slightest cold makes him wonder how long his immune system will be able to fight off illnesses.
Christopher James, chief executive of the Haemophilia Society, said a generation of hemophiliacs was exposed to HIV and Hepatitis C.
He said doctors had an obligation to tell Mackie, and other victims, that they were HIV positive so they could take steps to protect their partners.
"There was a very high death rate," said James, who hopes the inquiries will lead to a financial settlement for the victims as well as a public apology. "These people have faced enormous financial and emotional hardships from this catastrophe and they deserve to know what happened and why and to be sure it will never happen again."