A Norfolk man who contracted a devastating disease after being given contaminated blood products by the NHS is now being denied a drug which could save his life.
Scores of people in the region were infected with hepatitis C (hep C) or HIV after being given poisoned blood products that were imported in the 1970s and 1980s without proper safety checks – and in spite of safety warnings.
Many have subsequently died, but an EDP investigation has found the government continues to let down survivors and their families in several ways.
Today, it has emerged that a breakthrough drug called Sofosbuvir is being denied to a Norwich man, even though it was approved by drugs regulator NICE in January as a potentially effective drug to rid sufferers of hep C.
The refusal comes despite that fact that also in January, at a House of Commons debate on the scandal, MPs pledged to ensure 'priority access to NHS treatment to those affected' by the scandal.
The married father-of-five, who we have agreed to identify only as Simon, said the refusal had left him feeling 'worthless' and fearful for his future.
He said: 'The NHS gave me this condition, surely it is their responsibility to help me get rid of it?'
The drug, which costs an estimated £35,000 for a 12-week course of tablets, was recommended following trials for certain types of chronic hep C.
Taken with other drugs it could clear the virus and significantly reduce the chances of liver cancer.
However its planned roll-out, originally agreed to start in April, has been delayed by NHS England until August. NHS England has said it will still be given to those deemed to very serious cases, but campaigners say why should any victims suffer for any longer for something that wasn't their fault?
Sue Threakall, of patient group Tainted Blood, said: 'The NHS owes these patients the best possible treatment. A significant number of patients are living on borrowed time. We have recently lost a prominent campaigner who died not knowing if his family would be looked after. That is just cruelty on behalf of this government.'
Annie Walker, of Mousehold House, Norwich, contracted hep C from blood transfusions following an operation at the age of 19.
Now 61, she has been clear of the infection for six months after being included on the initial trials for Sofosbuvir.
She said: 'This drug could save people's lives. If I hadn't had it, I wouldn't be here now.'
An NHS England spokesman said: 'We welcome the agreement from NICE to grant NHS England the time to allow formal clinical networks for Hepatitis C to be established in order for people to have equal access to care. We will be publishing those plans in due course.
'NHS England has been operating an interim commissioning policy on these drugs while NICE has been considering its guidelines, ensuring that those in the greatest need have been able to access these treatments, and we made an additional £38m available in the last financial year to cure patients at risk of liver failure.'
Simon, who lives in the city centre, was diagnosed with haemophilia, which means blood cannot properly clot, at just 18 months.
Like most sufferers he injected blood products for most of his life, before discovering in 1995 at the age of 23 that blood was contaminated and he had contracted hep C.
He said: 'They knew it was contaminated but carried on anyway. If I did that it would have been classed as murder.'
He described the condition, which he has kept from most of his friends and some family due to the stigma, as causing lethargy, a 'brain fog' and confusion. His weight rocketed due to the drugs he was taking and he has recently sold a small business he co-owned claiming his fatigue meant he couldn't commit to it.
The 43-year-old added: 'I have children and grandchildren but no way of looking after them. I can't get a mortgage or insurance, through absolutely no fault of my own.
'No government wants to be held responsible for what happened.'
Funding and support
'It seems people have to go begging just to get anything from them.'
These are the words of Laura Rookyard, from Rickinghall, in Suffolk, the daughter-in-law of hep C sufferer Steve Sillett, from Brockdish, near Diss, on seeking financial support for those given tainted blood.
Just working out where to apply for financial support is a baffling experience. There are five places from which people can receive support, each one tailored towards different groups of people and offering different levels of funding.
Earlier this year an all-party parliamentary group inquiry was held to look at the funding provision for people affected by the contaminated blood scandal.
It raised a series of serious concerns, which included:
- Lack of ongoing payments for widows/widowers, leaving many living in poverty
- Inconsistencies in handouts. All HIV patients receive regular payments, but only those with a certain stage of hep C do
- A failure to provide for dependants in a household
- Demeaning and onerous application process
- Concerns over the future viability of some of the organisations due to a spike in claimants, but no increase in government funding
- An insistence on hospital records from the 1970s and 1980s – even though many hospitals make it impossible to access them or have simply lost records
- A lack of accountability from the trusts. More than half of all appeals one fund's panel are overturned.
The group came up with a series of recommendations aimed at simplifying the process, expanding the financial support for all those with hep C and their families and ensuring the best treatment possible is made available.
But campaigners are fighting for a one-off lump sum to be given to all those infected with contaminated blood, as well as regular financial support.
Lack of public inquiry
For more than 30 years the victims of the contaminated blood scandal received no public apology for their treatment.
That was until earlier this year when David Cameron said: 'It is difficult to imagine the feelings of unfairness that people must feel as a result of being infected by something like hepatitis C or HIV as a result of a totally unrelated treatment within the NHS, and to each and every one of those people I would like to say sorry on behalf of the government for something that should not have happened.'
His apology came upon the conclusion of the Penrose Inquiry, the Scottish probe into Hepatitis C/HIV acquired infection from NHS treatment in their country. At a cost of £12m its one recommendation was that anyone in Scotland who had a blood transfusion before 1991 should be tested for Hepatitis C if they have not already done so.
No such inquiry has been held in this country, something that irks Barford hep C sufferer Michael Colyer.
He said: 'Over the years the government has always used the same language and said people were 'inadvertently' infected, which implies it was nobody's fault. But why did David Cameron feel the need to apologise if that was the case? There are so many things I still want answers for.'
Lack of education
Victims and their families often talk of the stigma of having an infection from contaminated blood. People assume they were drug addicts, or if they are suffering from liver problems, an alcoholic.
According to Ms Walker, more education is needed, not only so the public and health secor understands their problems, but also to track down the thousands of victims that might still be out there.
She said: 'We know there are thousands out there who have not been diagnosed yet they don't even put leaflets in GP surgeries. I guess the problem is that more victims mean the government has to make more pay-outs.'
Lack of accountability
In several countries, including France, Canada and Italy, contaminated blood scandals have ended up being played out in the courtroom.
In one, a former French health minister was convicted and jailed for knowingly using contaminated blood on patients.
No legal cases have ever been pursued in the country.
In the 2007 Lord Archer independent inquiry, Lord Owen, a Labour health minister in the 1970s, said: 'The more you look at this, the more you look at the question in France, the more you begin to see people who were fearful of a legal process going on in this country. The issues we were dealing with were extremely important and you suddenly find that during a 10-year role, ministerial papers can be pulped.'
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