Blood and Money and Markets
This article appeared in Ceylon Today on Thursday September 14 2017
Sri Lankans have grown cynical about the number of public commissions and inquiries which have failed to shed any light or improve anything. Perhaps Sri Lankan politicians have learned from their former colonial masters that a good way to defuse a controversy is to set up an inquiry to delay any need for real action, at the same time providing a good living for lawyers and the great and the good who sit on these commissions. On 30 January 1972, British soldiers shot 28 unarmed civilians in Derry during a peaceful protest march against internment. Fourteen people died. There were inquiries that did not convince anybody. The Saville Inquiry was established in 1998 to reinvestigate the incident. Saville’s report was made not made public until 2010.
On July 11 2017, The UK government announced a full inquiry into how contaminated blood products gave thousands of people hepatitis C and HIV. Fourteen people died as a result of Bloody Sunday. As many as 2,400 people died as a result of the tainted blood scandal. Andrew Evans of the pressure group Tainted Blood commented: “Had haemophiliacs all died on one day, there would have been an immediate investigation and we would not have endured this silent scandal”.
Haemophilia is a genetically acquired disease in which the blood does not clot properly. It was once popularly called “the royal disease” and figured prominently in the history of European royalty in the 19th and 20th centuries. Queen Victoria, through two of her five daughters (Princess Alice and Princess Beatrice), passed the mutation to various royal houses across the continent, including the royal families of Spain, Germany and Russia. Victoria’s son Prince Leopold, Duke of Albany also suffered from the disease.
The first blood-clotting products were produced in 1966 and from the 1970s the UK imported vast quantities from the US. In the 1970s, sufferers took products known as Factor VIII and Factor IX concentrates, which were made by distilling and concentrating the plasma of large groups of donors. Factor concentrates were seen as a revolutionary treatment and a surge in demand led to pharmaceutical companies seeking substantial supplies of blood. Unfortunately, the blood was acquired from tainted sources. Convicts, drug addicts, prostitutes and people known to be infected with HIV or hepatitis were paid to donate their blood. The WHO warned Britain of the dangers of using these imported products. Large numbers of people were infected with HIV and Hepatitis C because of blood products supplied by the NHS. Of the 1,243 victims who were co-infected with both hepatitis C and HIV, less than 250 are still alive as I write.
In 1982, the first UK haemophiliac patient was diagnosed with Aids. Dr N Galbraith of the Public Health Laboratory Service warned the Department of Health that all blood products imported from the US should be withdrawn. A DoH official deemed this “premature” and “imbalanced”.
Those who campaigned for 30 years for an inquiry were not pleased at the recent announcement because the proposed inquiry was to be overseen by the Department of Health, the government department to blame for what happened. The main groups representing victims and their families lack trust in the department because they believe its officials were complicit in covering up the scandal for decades. There is even evidence that children were used as guinea pigs to test blood-clotting products. There was secret monitoring and failure to inform patients and families of the results. Documents were destroyed and medical records altered.
The mayor of Greater Manchester, former Labour health secretary Andy Burnham (surely, he was complicit also), has urged Theresa May to step in to save the inquiry. “I’m appealing to the prime minister to salvage the process before trust gets corroded on all sides.” He said the government could help solve the impasse by simply switching oversight to the Cabinet Office.
Commissions and Omissions
When the British magazine Private Eye reported on the issue in 1987, the death toll of haemophiliacs stood at 23 but the Tory government, despite repeated warnings, continued to use imported blood from skid row donors. The magazine points out that there are 2,000 surviving haemophiliacs whose lives have been ruined by the government’s failure to fund the production of safe blood-clotting products in the UK. In early 2000, safe but more expensive synthetic clotting agents were made available for children but not adults. Some adults found that they had been given products that may contain the fatal neurodegenerative variant Creutzfeldt–Jakob disease – remember mad cow disease?
Much was exposed by an inquiry led by Lord Archer (the former Solicitor General for England and Wales – not Jeffrey). This was a privately-funded independent inquiry set up in 2007 and concluded in 2009. Archer had campaigned for an inquiry with Lord Owen, who was the Labour Health Secretary from 1974 to 1976, Lord Jenkin, former Shadow Health Secretary, and others. The inquiry had no legal status and could not subpoena witnesses or demand the disclosure of documents. It did address the issue of missing evidence and documents relating to the scandal. For example, the ministerial papers of Lord Owen had been destroyed. “We have been unable to ascertain who carried out the destruction of the papers, and who gave the instructions. But the conclusion appears inescapable that some official made a decision which he or she had no authority to make, or that someone was guilty of a serious error of judgement. The consequence is that Lord Owen has done his best to recollect details of events a quarter of a century ago, but both he, and we, have been deprived of the primary sources”.
The current Health Secretary, Jeremy Hunt, claimed that the government could be “proud of our record in support of those who suffered from this injustice to date, both financially and in the search for truth”. To add further insult to the many injuries already inflicted, Hunt announced that proposed increases in payments to those with HIV and advanced hep C or both would be cut to better help those with first stage chronic hep C – robbing one set of victims to help another.
The Gift Relationship
Richard Titmuss, British social researcher and teacher, published The Gift Relationship in 1970. He compared blood donations in Britain (entirely voluntary) and the US (some bought and sold). Titmuss’s conclusions concerned the quality of communities where people are encouraged to give to strangers. When blood becomes a commodity, he argued, its quality is corrupted (American blood was four times more likely to infect recipients with hepatitis than was British blood). Titmuss helped preserve the National Blood Service from Thatcherite privatisation.
Privatisation and Outsourcing
Titmuss wrote about the value of altruism, reciprocity and social duty symbolised by donating blood free of charge in order to benefit the sick. I worked in the Department of Health in the late 1980s and early 1990s when the so-called “reforms” were introduced in order to impose market considerations on the care of the sick. Under Labour and conservative governments, this had brought about a corrosive commercialisation.
Harvard Philosopher Michael J Sandel has written a stimulating book entitled What Money Can’t Buy: The Moral Limits of Markets. Sandel’s argument is that markets and finance are taking over everything and in the process, are creating a moral vacuum. It is interesting to see that with Vision 2025, the UNP is still trying to drag Sri Lanka along with the delusion that privatisation and outsourcing are the panaceas for all evils despite all evidence to the contrary. The launch of V2025, the blueprint for the future of a “rich Sri Lanka” at BMICH gave an opportunity for old clichés to be trotted out. The president and the prime minister said that in Sri Lanka Finance Management was poor; perception of corruption was high, infrastructure inadequate; many laws were outdated and institutions were weak. “Reforms are needed on all these fronts and we must revitalise both governance and economic management.” Privatisation and public private finance initiatives will solve all Sri Lanka’s problems apparently. This conveniently ignores the fact that privatisation and deregulation give license to corruption. The railway system in the UK is an utter shambles as a result of privatisation. So is the water “industry”. Many questioned whether it was morally justifiable for a God-given basic commodity like water to be traded for profit. Will they buy and sell the air that we breathe? They would if they could. I will explore the morality of markets further next week using Professor Sandel’s book as my guide.