During the 1980s, more than 150 children who had been diagnosed with haemophilia in the UK turned out to be infected with HIV, according to information in documents from the national archives seen by the BBC. Some of the affected families are submitting evidence to a public investigation into what is known as the worst health treatment disaster in this country.
It all happened almost 36 years ago (around the end of October 1986) and yet Linda says she will never forget the day she was told her son had been infected.
She had been called, along with her 16-year-old son Michael, to a consulting room at Birmingham Children’s Hospital.
As a young boy, Michael was diagnosed with hemophilia, a genetic disorder that prevented his blood from clotting normally.
Linda had assumed that the meeting would have to do with preparations for the transfer of Michael’s care to the Queen Elizabeth Hospital, the largest in the city.
“It was supposed to be so routine that my husband [el padrastro de Michael] was waiting outside in the car,” he says.
“All of a sudden the doctor says ‘sure, Michael is HIV positive’, and he said it like he was talking about the weather. I felt a sinking feeling in my stomach.”
“We got in the car, I told my husband and we went back to the house in silence. We never spoke, that was the shock.”
positive test
The AIDS crisis was still just beginning: in just a few months, the campaign entitled “Don’t die of ignorance” would bring the disease into every living room in the UK through a massive campaign.
But the stigma of the disease was real enough.
By 1985, dozens of parents had withdrawn their children from Hampshire primary school after a 9-year-old pupil – also a haemophiliac – tested positive for antibodies to AIDS, as HIV was known at the time.
Michael didn’t want his friends or family to know.
“That’s how he dealt with it, he kept it to himself,” says Linda.
“He never told his friends or said anything because he just wanted to feel normal.”
In the United Kingdom, between 1970 and 1991, some 1,250 people with blood disorders were infected with the human immunodeficiency virus after receiving so-called “Factor VIII” (a treatment that replaces the missing clotting protein in the body). of people like Michael).
Among them were 175 children who had been prescribed Factor VIII by NHS doctors in hospitals, schools or hemophilia clinics.
It is believed that tens of thousands more may have been exposed to hepatitis C (which can cause liver failure and cancer) either through the treatment itself or through a blood transfusion.
Furthermore, at that time, half of people infected with HIV died from an AIDS-related illness.
drug users
At the time, the UK was not self-sufficient in blood products, so much of Factor VIII was imported from the US.
Each batch of the drug was made from the blood and blood plasma of thousands of donors. Even if only one of those donors tested positive for HIV, the virus could be transmitted.
Pharmaceutical companies in the US paid individuals to donate blood, even in high-risk groups like prisoners and drug users.
Linda remembers that the first time she heard about AIDS was during a presentation at Birmingham Children’s Hospital in 1984, in which it was warned to watch out for certain symptoms.
But he says the family was never fully informed about the risks they faced: at one point, a nurse told them not to worry because “Michael was fine.”
During all this time, his son was still being treated with the same American drug.
The old Queen Elizabeth Hospital in Birmingham closed its doors in 2010, and its services moved to a new location.
Michael had shown health problems during his adolescence: from excessive night sweats, through glandular fever and ending in a bad episode of influenza.
But he continued to live his life to the full: traveling, listening to music and following his Bromwich Albion football team.
“There was a big game at Wembley Stadium and he was feeling really, really bad,” says Linda.
“So we decorated the car, and he met his friends there. No matter how he was feeling, if he had a chance to make it, he was going to make it.”
Later, as his immune system began to break down, Michael lost weight, began to feel fatigued and lose his memory.
He was taken to Heartlands Hospital in Birmingham, where Linda – who had to give up her job as a cook – cared for him at home and nursed him through the last days of his life.
“She said ‘Mom, you’re never going to be a grandma,’ and I just said, ‘Don’t worry about it.’ It was the only thing I could think of to say to her,” Linda says.
Michael developed meningitis as well as pneumonia, both related to the HIV he had been infected with as a child.
Michael died on May 26, 1995, exactly one week before his 26th birthday.
special session
Nearly 3 decades later, Linda is providing evidence to a public inquiry into the medical disaster.
He will appear joining other parents for a special session on the experiences families have had with infected children during the 1970s and 1980s.
“I felt like I had to do it because I wanted to get to the bottom of it,” he says.
“We all want to know why it was allowed to happen, and, moreover, why it continues to happen.”
Linda asked that her last name not be used.
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BBC-NEWS-SRC: https://www.bbc.com/mundo/noticias-63139702, IMPORTING DATE: 2022-10-06 13:30:05
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