Sentenced to a life on death row

During the 1970s and 1980s nearly 5,000 people were exposed to Hepatitis C. Of these more than 1,200

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.

You can find out more about this issue by going to Tainted Blood and to the Haemophilia Society.

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Puffins in peril

Britain’s best-loved seabird is vulnerable to global extinction.

The boatmen helped us scramble ashore and soon there were 50 people wandering on an uninhab­ited slab of sea-battered dolerite called Staple Island. It is one of the National Trust-owned Farne Islands in Northumberland and among England’s most spectacular wildlife locations. There are 100,000 pairs of breeding seabirds here and they were everywhere: at our feet, overhead, across every rock face. The stench of guano was overwhelming.

While the birds seemed to be boundless, the human beings converged on the grassy knoll where the local star attraction resides. It’s the creature that adorns the boat company’s publicity and is emblazoned on the National Trust’s website for the island, the bird that possesses what the poet Norman MacCaig called the “mad, clever clown’s beak”: the pint-sized, parrot-faced puffin.

The British love for this creature is so intense that it is, in essence, the robin redbreast of the sea. Nearly all of its breeding colonies around our coast are tourist attractions. Just across the water, along the shore from Staple Island, is the town of Amble, which holds an annual festival devoted to the puffin. From Lundy in Devon and Skomer in Pembrokeshire to the Isle of May off the Fife coast, or Fair Isle in the Shetlands, trips to puffin colonies are frequent, sometimes daily, events.

“Every tourist shop on these islands sells puffin merchandise – knitwear patterns, tumblers, carvings, coasters, cuddly toys, clothes and, of course, puffin hats,” Helen Moncrieff, the area manager in Shetland for the Royal Society for the Protection of Birds (RSPB), told me.

While the love affair is unquestionable, what seems in doubt is our ability to help the bird now that it is in trouble. Fair Isle once supported a puffin colony of 20,000 birds. In less than three decades, that number has halved. Similar declines have been reported at Britain’s most important puffin site on St Kilda, Scotland, where millions are said to have bred. Now there are fewer than 130,000 pairs, half the total recorded as recently as the 1970s.

The national picture is alarming but the news from elsewhere is even worse. Continental Europe holds more than 90 per cent – five million pairs – of the global total of Atlantic puffins but they are shared primarily between three countries: Denmark (the Faroe Islands), Iceland and Norway. Across this subarctic region, losses have been estimated at 33 per cent since 1979, when monitoring began. But the most striking figure comes from a colony on Røst, Norway, where there has been a fall over this period from nearly 1.5 million pairs to 285,000.

The Westman Islands off the south coast of Iceland hold a substantial proportion of the country’s puffins. Since 2005, breeding success there has been almost nil, and a similar failure has recurred on the Faroe Islands for more than a decade. In both places, where hunting puffins was once a staple of cultural life, catchers today have initiated a self-imposed moratorium.

Puffins are long-lived species and a life­span of between 20 and 30 years is not unusual, yet Euan Dunn, principal marine adviser to the RSPB, explains the implications of persistent breeding failure. “Puffins on Shetland or the Westmans may go on attempting to breed for years, even decades, but eventually all those old adult birds will die off and, if they haven’t reproduced, then the numbers will start to plunge.”

BirdLife International, a conservation network that classifies the status of birds worldwide, has reached the same conclusion. It judges that the Atlantic puffin is likely to decline by between 50 and 79 per cent by 2065. The nation’s most beloved seabird has been declared a species that is vulnerable to global extinction.

To unpick the story of puffin losses, marine ecologists have examined the bird’s oceanic ecosystem and looked particularly at changes in the status of a cold-water zooplankton called Calanus finmarchicus. This seemingly insignificant, shrimp-like organism plays a crucial role in North Atlantic biodiversity and has experienced a huge decline as sea temperatures have risen steadily since the 1980s. While the decline of the finmarchicus coincided with swelling numbers of a close relative, this other zooplankton species is less abundant and nutritious.

As the finmarchicus has suffered, so, too, has one of its main predators, the lesser sand eel. And it is this formerly superabundant fish that is the staple food of puffins in many areas of the Atlantic. At the root of the disruption to marine life are the hydra-headed effects of climate change.

Though no one disputes that an important shift is under way in the sea areas of northern Britain and beyond, not everyone agrees that the present puffin situation is a crisis. A leading British expert, Mike Harris, thinks it is premature to designate the bird an endangered species. There are still millions of puffins and, he says, “We need numbers to plummet before we even start to assume that things are terminal.”

Similarly, Bergur Olsen, one of the foremost biologists studying puffins in the Faroe Islands, believes that the talk of extinction is over the top. “The food situation may change and puffins may well adapt to new prey, and then their numbers will stabilise and perhaps increase,” he says.

***

On Staple Island, the extinction designation does appear bizarre. The Farne Island puffin population has increased by 8 per cent since 2008 and there are now 40,000 pairs. This success mirrors a wider stability among puffin colonies of the North and Irish Seas. The distinction in feeding ecology which may explain the birds’ varying fortunes is that, in the southern parts of the range, puffins can prey on sprats when sand eels are scarce. Sprats appear to have suffered none of the disruption that assails the other fish.

But Dunn says it is important to look at the whole picture. “It’s fantastic that puffins are doing well in places like the Farnes, but remember: Britain holds less than 10 per cent of the world total. Also, the declines that have beset puffins in Shetland and St Kilda are even worse for other seabirds.”

The numbers of a silver-winged gull called the kittiwake have fallen by 90 per cent in Shetland and St Kilda since 2000 and by 80 per cent in the Orkneys in just ten years. Shetland’s guillemot numbers have also halved, and the shag, a relative of the cormorant, has experienced falls of over 80 per cent on many islands since the 1970s – 98 per cent, on Foula. Most troubling is the fate of the Arctic skua, which feeds mainly on fish it steals from other seabirds and is reliant on their successes. Its declines are so severe that Dunn fears its eventual loss as a breeding species in Britain.

While there is disagreement about what to call the puffin predicament, there is unanimity on one issue: much of the data that informs the discussion in Britain is out of date. All of these seabirds, which are of global importance, have been monitored decade by decade since the 1970s. Yet the most recent big audit of our cliffs and offshore islands was concluded in 2000. The full census data is now 16 years old. The organisation that underwrites this work is the Joint Nature Conservation Committee; it is sponsored by the Department for Environment, Food and Rural Affairs, which has suffered deep budget cuts since the 2008 financial crisis. There is no certainty that another comprehensive census will be mounted any time soon.

“Much is made on wildlife television of how special these islands are for wildlife and how much we care about it,” Dunn says. “In the case of our seabirds, one of those claims is indisputably true. Britain holds populations of some species that are of worldwide significance. But if we lack even basic information on those birds and how they’re faring, especially at a time when our seas are in such flux, what message does that send about how much this country cares? And how can we ever act effectively?”

The plight of the puffin is shedding light on the fortunes of our marine wildlife generally and the shifting condition of our oceans as a result of rising carbon-dioxide levels. Now, puffin politics is also starting to show
this government’s indifference to nature.

This article first appeared in the 28 July 2016 issue of the New Statesman, Summer Double Issue