October 3, 2018
Credit: Francis Tyers (CC-BY-SA; GPL) via Wikimedia Commons
On Sept. 24, the first widespread inquiry into how thousands of people in the United Kingdom received contaminated blood in the 1970s and 1980s began with a preliminary hearing and a commemoration event dedicated to the victims. The inquiry will look into whether drug companies or government agencies knew the blood products were contaminated at the time they were being used, whether victims were tested or treated without their consent, and whether documents were destroyed in an attempt to cover up the truth.
About 5,000 hemophiliacs in the UK contracted hepatitis C and 1,200 of them also contracted HIV after receiving contaminated blood or blood products. Many of them went on to unknowingly pass these diseases to their spouses and partners, as well as to their own children. Sir Brian Langstaff, chair of the inquiry, has said that as many as 25,000 people could have been harmed by the tainted blood products and that at least 2,400 people have already died as a result.
Hemophilia is an inherited condition mainly occurring in men in which the body does not produce enough of the proteins needed for blood clotting, putting affected individuals at risk every time they get hurt, especially if they sustain injuries that cause internal bleeding. Hemophiliacs rely on a blood clotting factor that is made from the plasma of numerous blood donors. Tens of thousands could contribute to one batch of this injectable medication, and if just one or two of them had HIV, it could contaminate the whole batch. At the time, the UK relied on U.S. pharmaceutical companies to provide this treatment, and these companies often used the plasma of inmates and drug addicts who sold their blood for a small fee.
As early as the 1970s, it was known that some batches of the blood supply were contaminated with hepatitis C, and as HIV emerged in the 1980s, awareness grew of the risk from this emerging pandemic. In 1982, the U.S. Centers for Disease Control and Prevention (CDC) noted three cases of AIDS among hemophiliacs and warned that the clotting factor might be one way it was transmitted. It took a few more years for companies to develop a method of heat treating the plasma to remove viruses and for governments to require that all blood products be treated. At the time, HIV was not completely understood and no method existed to test blood, but some still argue that governments and drug companies were slow to respond.
This response or lack of response has been the subject of numerous government investigations and lawsuits across the globe. In the United States, as many as 10,000 hemophiliacs contracted HIV through blood transfusions. An analysis by the Institutes for Medicine said that these people were "victims of a tragic miscalculation by federal regulators," and drug firms that produced the tainted products offered payouts of $100,000 or more to victims and their families. In other countries -- such as France, Germany, Japan, and Switzerland -- this issue has played out in criminal court with government officials and drug company executives facing a variety of charges. Moreover, the Canadian Red Cross pled guilty to offering "adulterated blood" to hemophiliacs and others who needed infusions. The agency stopped distributing blood in that country as a result.
Those impacted by the blood scandal in the UK have argued for years that not enough was being done to investigate what happened or to provide sufficient restitution. Beginning in 1988, the government set up a number of funds to support hemophiliacs and others who contracted HIV through the blood supply. Victims were offered one-time payouts, as well as small monthly stipends to cover costs, but had to sign away their rights to any further compensation. At the time that they accepted these terms, HIV was still seen as a death sentence, and some victims say they based their decision to forgo additional money on that short life expectancy.
Until now, there has been no official inquiry into the scandal in the UK, and no government agency or drug company has ever been prosecuted or admitted liability. In 2007, Lord Morris of Manchester conducted an independent investigation, but government officials were not compelled to testify and many refused to provide evidence. The independent investigation found that many government documents related to the blood supply had been destroyed. The investigation's final report called the situation a "horrific human tragedy" and called on the government to provide more fair and realistic compensation packages.
In the decade since that investigation, victims and their families have continued to put pressure on public officials to face this issue and have seen some success. In 2016, a motion passed in the House of Commons calling this "one of the biggest treatment disasters in the history of the [National Health Service]." In 2017, a former health minister called the scandal a "criminal cover-up on an industrial scale," and the Welsh assembly called for a UK government inquiry. Later that year, just before the House of Commons was set to debate an emergency motion calling for a hearing, Prime Minister Theresa May announced that she was calling for an official UK-wide investigation.
The investigation is estimated to take as long as 15 months to uncover evidence and hear testimony, but it may already be having a cathartic effect on some of those most impacted by the scandal. Mark Ward, a 49-year-old hemophiliac who was diagnosed with HIV when he was 14 told The Guardian, "We want the truth to come out. We want the power of giant pharmaceutical companies over government to end. My life was deemed to be worth less than their profits."
Chris Smith, whose father died one year after contracting HIV and hepatitis C from contaminated blood products, spoke to the newspaper of the stigma he faced as a child, "There were families at the time who had 'Aids scum' spray painted on their homes. It was like a dirty secret." Smith went on to say: "There needs to be some sort of accountability. There's been no blame in any way. What we would all like to see is the truth."
Martha Kempner is a freelance writer, consultant and sexual health expert.
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