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Did The AIDS Crisis Have To Devastate The Haemophilia Community?

20/07/2017 12:05 BST | Updated 20/07/2017 12:06 BST

It was 1987. The fear caused by the AIDS crisis was palpable. Princess Diana hadn't yet reached out to a gaunt gay man dying. The haemophilia community had been ravaged by AIDS. At the same time as the first cases of gay men dying from a new condition in the USA were recorded in the early '80s, people with haemophilia were also dying with similar symptoms. Eventually the virus that caused this condition was identified and a test was created. People with haemophilia were tested and the link that had been obvious from the start was clear. The Human Immunodeficiency Virus (HIV), was causing the deaths of both infected gay men and people with haemophilia.

There are approximately 5,000 people with a haemophilia related condition in the UK. This means they rely on blood products to facilitate the coagulation - or clotting - of their blood. The real trouble is caused by internal bleeds into joints which causes excruciating pain and other complications and if unchecked into a vital organ, such as the brain, can be fatal. By 1987, 60% of those with severe haemophilia had been diagnosed with HIV. 1,200 people had been infected in the UK through the use of blood products.

Haemophilia is a genetic condition. It runs in families and because people can be disabled by it, having haemophilia can mean generations can be dependent on welfare. But not all people affected by haemophilia are caught in the poverty and disability trap. Queen Victoria was a carrier of the haemophilia gene and at one point the genetic makeup of half the royal families of Europe included haemophilia. People with haemophilia are of all ages, from babies to the elderly. Like everyone else, some have families. And since the advent of effective treatment to manage bleeds, people with haemophilia can lead lives undisturbed by their condition. Treatment comes through the use of blood products. These blood products, made up of thousands of donations of blood, were one of the post war miracles in health care.

And then, in the 1970s, along came blood borne viruses. First to infect the blood banks were the hepatitis viruses. Most people of a certain age with haemophilia have been exposed to hepatitis. HIV, although less communicable, is transmitted in a similar pattern to the hepatitis viruses. HIV turned up in blood banks in the '80s. The pattern of HIV amongst gay men and people with haemophilia is almost identical to that of hepatitis. Once it was clear that gay men were sharing a condition - AIDS - which could only have been caused by a virus (even if that virus had not yet been identified), it was inevitable that people with haemophilia would be similarly affected.

People with haemophilia were in a crisis. More and more were becoming unwell. Already living with a pre-existing condition, many reliant on benefits, people could not cope. The Haemophilia Society took advice. Could they sue? After all, people with haemophilia had accepted treatment from the NHS in good faith and had been exposed to a life threatening condition. The legal advice the Haemophilia Society received said they couldn't overcome the high test to establish medical negligence.

With compensation through a negligence claim unavailable, the Haemophilia Society launched a public campaign for recompense from the Government. It began in the autumn of 1987. It was over by Christmas. The Thatcher Government buckled almost immediately, offering to set up a Trust for people with haemophilia affected by HIV. It offered an ex gratia payment. The Government did not accept liability and nor did it set a precedent, they insisted. It was a one off recognition of the unique situation the haemophilia community found itself in - that's all.

Did the Haemophilia Society cave in too quickly by accepting this compromise? The Society's board thought long and hard. All of them were in some way affected by haemophilia. All of them exhausted by the AIDS crisis. "It's a start", announced the Revd Alan Tanner, Chair of the Society.

And now 30 years later the Government finally accepts the need for a public inquiry into how so many people were infected with blood borne viruses through medical treatment. It was always a scandal. Everyone knew something had gone terribly wrong. Yet there was no remedy. More importantly no lessons were learnt. If the UK had been self-sufficient in blood products would the scale of the crisis have been averted? Scotland was always largely self-sufficient, but they imported a batch of blood products from the US. Unbeknown to the Glasgow children's hospital it was contaminated with HIV. All the kids who received that batch were infected. England also imported infected product, but English blood products could carry HIV and other viruses too.

The haemophilia community went through hell. All those terrible things that happened to gay men through the emergence of AIDS happened to people with haemophilia. People were rejected and lost their jobs. Some were made homeless. And then some things happened to people with haemophilia specifically because of their or their loved ones' condition. Children were excluded from school. HIV positive women whose partners were HIV positive were denied reproductive choices. A woman could have many members of her family living with and dying from HIV.

The British state has waited far too long to order this inquiry. Governments should not have relied on the poor state of medical negligence law to evade its responsibilities. The Haemophilia Society should not have been fobbed off with a paltry ex gratia payment. Government should have been asking itself the questions people with haemophilia have been raising for decades and Government should have wanted to have those questions answered openly and transparently.

If we can learn anything from this inquiry, as well as Hillsborough and the pending Inquiry in to the Grenfell Tower disaster, it is that we have rights and when we are harmed those rights entitle us to answers. Nor should this inquiry have been in the gift of the Prime Minister. The difference between 2017 and 30 years ago is that at least now we can enforce our rights. The Human Rights Act was at the heart of the Hillsborough Inquiry as it will be at this one and Grenfell Tower. And because of that truth and justice will be served.