On Monday 4 June Haydn Lewis will give evidence to the independent Archer inquiry into the supply of contaminated blood products to UK haemophilia patients.
The inquiry is being privately funded – the government says treatment was given in good faith. More than 1,700 patients have died, many others are terminally ill.
My name is Haydn Lewis and I have mild haemophilia, a genetic condition which I was born with in 1956.
Haemophilia is treated by injection of a missing protein and up until 1974 I only received British blood products donated by volunteers.
However, by 1973 the first commercial blood products were imported into the UK. These doses were prepared from pooled plasma from thousands of donors. If some of the donors had a blood borne virus, such as hepatitis C or HIV, then it could infect the whole batch.
Without consent or being informed of the known risks, I was prescribed commercial products from high risk paid donors. This meant that there was an increased risk of hepatitis, HIV, or any other blood borne virus.
In 1985 I was informed I had contracted HIV, even though my medical records state I tested positive a year earlier.
But let’s go back a decade. Two things remind me of 1975. It was the year I got married to my wife Gaynor and the year when Labour’s then Health Minister David Owen announced he would ensure Britain’s blood transfusion services were the safest in the world by implementing a policy of self sufficiency, only using British blood donated by volunteers.
He was advised by treating consultants that a target of 30 to 40 million units would be needed to meet future demand. Owen instructed officials in the Department of Health that his target should be met by 1977.
By 1978 I was the proud father of two healthy sons – in itself a relief because haemophilia is carried through the female line.
We subsequently decided that Gaynor should be sterilised to avoid further pregnancies. It also allowed us to have unprotected sex.
Following my diagnosis in 1985, my wife tested positive for HIV in 1988, this was also the first year I was tested without consent for Hepatitis C.
But I was only informed I was Hep C (HCV) positive in 1994 and then only when I asked. My treatment for Aids began in 1995.
In 2001 I was informed that I had received several different batches of blood products donated by a victim of vCJD.
It’s my contention that government did not want patients to know of their HCV results in 1990 because there were ongoing legal cases relating to the HIV infection of Haemophiliacs.
At this present time my wife and I are both coping with triple combinations of drugs for our HIV+ condition. It’s only by the grace of god my boys are not HIV or Hep C+ (HCV).
No two days are the same in the way they affect our ability to deal with and try to lead a normal family life. Our levels of energy range from being able to walk around the local park three times a day at best, to only once if we are lucky.
I am writing this as someone who has been prompted by his infection – and that of his wife – to question the actions and practices of government and the NHS between the late 1960s and the 1990s.
The Archer inquiry has been set up to look at the use of voluntary donated and commercially purchased contaminated blood products by the NHS and the impact of that policy on individuals.
The Inquiry has heard testimony from the infected and the affected.
The witnesses have raised many moral and ethical issues about how patients, were treated by consultants, the impact of government policy through the 70s and even up to the present time concerning non-consensual testing of blood for vCJD.
There are many factors to consider, yet there can be none more important than the political and economic decisions that have affected the care of patients.
Whilst government announces it is releasing yet more documentation, little has been said which might serve to clear the muddy waters for Lord Archer.
Could it be that the systemic failures of successive governments will be buried in a pile of paperwork?
When the first commercial blood products were privately imported into the UK in 1973, the practice of consultants encouraging haemophiliac patients out of hospital beds and on to home treatment was already well under way.
These commercial concentrates were not the safest of products, yet there is evidence of consultants by-passing the Ethics Committees of the GMC and MRC by importing these medicines under the pretext of “Life Support Therapy”.
But mild haemophiliacs like me were not in this category and consequently were not deemed to have a life-threatening diagnosis.
Consultants continued with their home treatment crusade for 10 years and by May 1983 – despite the proliferation of warnings from official bodies – they still had their heads in the sand.
With the UK lagging some 3 years behind the USA, there was plenty of information out there about the risks to haemophiliacs from blood-borne diseases but apparently never occurred to those in charge of treating us.
In my view there is only one conclusion the Archer Inquiry can reach – that ministers failed in their duty of care.
It is not surprising then there are reports that the Department of Health has given instructions to the medical profession NOT to get involved with the Inquiry.
Even more damning is the way they have dealt with their policy of damage limitation.
The haemophilia community, was not informed of the increased risks from commercial products and couldn’t therefore make an informed choice about treatment.
Having choices in life makes one feel human, having multiple viruses takes those choices away.
Governments are judged on the way they treat the most vulnerable and they should be in no doubt about how I feel.
I feel as if I have been sentenced to a life on death row. But it wasn’t for a crime I committed – it was the crime of successive British governments and it’s more than time that they answered for their actions.