LONDON—After four decades and 3,000 deaths, those who survived being infected with HIV and hepatitis C by blood transfusions from prostitutes, drug users, and even cadavers are hoping to finally find answers.
Many of the victims of Britain’s “tainted blood” scandal found out only after years that their revolutionary blood treatments, provided by the national health service, were a death sentence.
After decades of campaigning, hearings began Sept. 24 at the first official inquiry into infected blood products imported from the United States in the 1970s.
The inquiry will try to establish what happened, how it happened, and whether there was a coverup, as many of the victims claim. The inquiry could lead to prosecutions.
Officials and pharmaceutical companies were convicted in Japan and France many years ago, with a French health minister found guilty of manslaughter in 1999.
Most of those affected were being treated for hemophilia, a hereditary disease that means sufferers’ blood lacks a factor that’s essential for clotting. Prior to the 1970s, treatment required plasma transfusions, meaning a trip to the hospital for even minor injuries.
Then, a new product, called factor concentrate, was developed that could be self-administered at home via injection. The factor concentrate was developed from donated blood.
The UK turned to the US, where prostitutes and prisoners were among those paid to give their blood, raising the risk of infection. The risk was further heightened because the blood from many donors was pooled to create the product.
“These risks were ignored by leading clinicians and government, who then failed to take appropriate action to end their use and return to safer products,” said a statement from the UK Haemophilia Society.
“Pharmaceutical companies and leading clinicians did not appropriately share, or even hid, information about risks from patients and patient groups. Many people were infected with deadly viruses during this time.”
Last year, Collins Solicitors, one of the law firms representing victims, said it had “compelling new evidence” that shed light on “efforts made by the Department of Health to keep matters under wraps.”
The statistics on the number of victims vary according to different sources and criteria, with the number of deaths between 2,000 and 3,000.
According to an investigation last year by a group of lawmakers, an estimated 32,718 people were infected with the hepatitis C virus between 1970 and 1991, but only 6,000 had been identified.
According to the Haemophilia Society: “In the 1970s and 1980s, over 4,500 people with hemophilia and other bleeding disorders were multiply-infected with HIV, hepatitis B and C, and a range of other blood-borne viruses. Over 2,000 people have since died and of the 1,243 people known to be infected with HIV less than 250 are still alive.”
An official public inquiry was ordered last year by Prime Minister Theresa May.
Formally opening the inquiry on Sept. 24, Sir Brian Langstaff said that there still could be many people who aren’t aware that they have been infected.
“There may yet be many thousands more who do not feel well but have not yet been told that the reason for this is that their life is threatened by hepatitis C,” he told the inquiry.
Many victims of the scandal testified via video recordings at preliminary hearings on Sept. 25. One woman described being left stunned after she became infected with HIV through her husband, who was a hemophiliac.
“This was the mid-1980s and the climate of fear, discrimination, and stigma associated with HIV and AIDS was horrendous,” she said. “We coped the best we could. We were silenced, and we kept quiet.”
Michelle Tolley, a core participant in the inquiry, described the scandal as the “worst tragedy in the history of the NHS,” adding, “Every day, I wake up with a death sentence hanging over me.”
Evidence will be heard starting in spring 2019, and the inquiry is expected to last 15 months.