An important inquiry of a British injustice from the 1970 and 1980s has finally got underway in London.
The long-awaited Infected Blood Inquiry is holding its first public hearings, where people living with haemophilia and now infected and affected are giving oral evidence. Up to three per day who contracted HIV and Hep C through transfusions and blood products – much of which came from the USA. The British government, during Margaret Thatcher’s premiership, were warned by UK doctors and specialists that there could be a problem but they were overruled and ignored.
The result of this indifference, has been devastating. About 3,000 people are estimated to have died – around 50% of all people living with Haemophilia – and more than 25,000 may have been infected.
Mark Ward, now 49 and who is gay, was diagnosed with HIV in 1984 at the age of 14. He was born with severe Haemophilia, a genetic blood disorder which means his body does not produce the protein Factor8 which is essential for the blood clotting.
“Our consultant basically told my parents – Don’t share your HIV diagnosis with anyone because we can’t guarantee your safety…” remembers Ward.
In 2014, Ward started Haemosexual – an advocacy group and online resource for other gay men with bleeding conditions. He’s flown around the world to get doctors to understand gay patients with blood clotting disorders. Ward’s work includes being a resource for LGBTQ patients who approach The Haemophilia Society UK.
This is his story.
Factor8 and my HIV diagnosis.
The treatments used during the 1970’s, 80’s and 90’s were manufactured from the use of whole blood sourced from multiple locations, which included borstals and prisons here in the UK as well as paid donors from the USA, known as “skid row donors”.
The process to extract the Factor8 which made the most profit for pharmaceutical companies used up to 10,000 bags of blood. Held in huge vats, the risk of viral contamination was 100 percent certain as it only took one infected sample to contaminate the rest. Certain pathogens such as hepatitis viruses were known about at this time but were deemed an acceptable risk. Following the manufacturing cycle, the concentrated Factor8 product was then freeze dried and shipped around the world. These products were injected into patients who required treatment for their bleeding episodes, such as nosebleeds, joint bleeds or muscle bleeds. My first treatment of 100 percent infectious Factor8 was in April 1977, aged eight years old.
Due to the process of manufacture, from the very first injection my body was constantly being infected and re-infected with multiple pathogens. My blood was frequently being tested without my parent’s knowledge. I would have already been diagnosed with a number of infections by the time is was again non-consensually tested for HIV.
I had spent six weeks in hospital for planned major knee surgery in 1984. On the day of my discharge my parents were wheeling me out to the car via the Haemophilia Centre at the Royal Free Hospital in London. Suddenly one of the haemophilia nurses popped up from behind a hatch and shouted across the waiting room. She asked my parents if they wanted to know my “HIV results”, my parents, not knowing very much about it said “yes”. The nurse then replied “positive”. She then waved and said “see you next time”.
Dying like in the time of the Black Death
During the late 1970’s and 80’s there were approximately 5,000 haemophiliacs living in the UK. Out of those 5000 people, 4800 were infected with hepatitis C and 1243 were also infected with HIV.
These were not the only infections to happen, as each and every subsequent treatment would re-infect the recipients with further variants, genotypes and pathogens. Most haemophiliacs from that time period have become “super-infected” from the multiple strains of hepatitis and other contaminants, some of which have never been disclosed to the patients.
From the late 1980’s we saw the death rate reach such significant numbers, haemophiliacs were dying faster than those who perished in the Black Death. Lives filled with grief, loss and trauma waiting for their turn.
Of the 1243 HIV infected, 240 are still alive. Of the 4800 infected with HCV, just over 2000 remain, striking fear across our small community on a daily basis.
I’m alive yes, but when I learned more details about how dangerous the treatments were and the many opportunities the government and medical professionals had to protect mine and the lives of so many others, I went from being a survivor to a victim in an instant.
The trauma suffered hasn’t just come from living with HIV but from those who played a part in my infection. I have been subjected to stigma, discrimination, bullying, intimidation and even physically assaulted for challenging the establishment, asking questions and calling for justice. I’ve felt tormented, isolated and worthless. Emotions nobody should be made to feel and certainly not from the healthcare profession. I walk around feeling empty, in a state of constant grieving and at times life feels very dark, perhaps even pointless.
Being born “different” from the general population made everything impossible to understand properly, especially at a time when disabled people were seen as objects. The mere thought of a disabled person being sexual in any way was considered a taboo subject. My difference was constantly being reinforced due to the nature of my haemophilia. At school I was the freak during the day and then almost bleeding to death at night. Living life right on the edge like that prevented me from seeing anything further than the following day. But I always knew there was something more and looking back I can say I was attracted men from an early age.
Gay and living with Haemophilia
It is extremely important, not just for me but for all the other men and women who have a bleeding disorder battling with their identity, sexuality and emotions, to know others like themselves. We need to champion each other and offer support and hold each other up.
Education is the most powerful tool we have in our arsenal to combat hate, fear and stigma. By speaking out and telling my story, my ambition is to prevent anyone being made to feel the way I have, and hopefully protect them from harm. Enabling them to make informed decisions through accessing support, information and equality. I also want my story to give others hope. Recently, I met a haemophiliac who asked to shake my hand as he then told me, I was “the first HIV infected haemophiliac” he had “ever met”. So I gave him a hug and said “you now have one as a friend too”.
I officially established Haemosexual in 2014. After more than 20 years of personally trying to bring about changes. Both national and global organisations continue to fail to raise awareness of LGBTQ people living with a bleeding disorder.
My aims for Haemosexual are not demanding anything outrageous. I’ve simply been calling for recognition, equality, respect, improved healthcare, along with access to support and information. Sexual health is vital to everyone with or without a disability. Considering how many haemophiliacs around the world have perished, I find it heart-breaking to know those living with the condition today are again being put at risk from intolerance. Lives can be improved and protected by talking to patients as people rather than conditions. This can also be applied to any other chronic illnesses or disabilities.
Growing up, I had no disabled-LGBTQ role models to look up to – sadly that is still the case today. Here in the 21st century, outdated attitudes persist. Yes, diversity and inclusion are becoming seen in more ways than ever but for someone struggling with their health and possibly their sexuality, who do they have? I hope one day to be that person who makes another human being feel better about who they really are.
Stigma is a real concern, and it come from anywhere and anyone. My personal opinion is the division goes back decades, possibly because of the way the government and media provided information about the AIDS crisis back in the 1980’s. The world was a much different place, and society’s views on certain communities wasn’t very sympathetic. Therefore, to the wider public, we were all disease carriers and targets of hate. Yet within the haemophilia community, it appeared as if we were “innocent victims” caught up in this global tragedy through no fault of their own. I know this was a narrative medical professionals used to tell patients. Basically, haemophiliac’s infections were all a big “accident” because homosexuals, drug addicts and prostitutes with AIDS had donated blood and that’s how the virus got into the blood supply.
For decades people with disabilities, including the bleeding disorder community have been subjected to offensive behaviour and attitudes, including, intimidation, cruelty and discrimination. Our equal rights have not only been ignored but there appears to be a consistent refusal to listen to us, with an objection to recognising all those requiring support. This has not been exclusive to The UK Haemophilia Society, but also includes government officials and health professionals within the NHS. Haemophilia Societies around the world do not have or provide information to people from the LGBTQ community who are living with a bleeding disorder.
I was told as a teenager by my haemophilia centre consultant and staff “there are no gay haemophiliacs”. They led me to believe my infection with HIV, also known as the “gay plague” was the reason I am attracted to other men. As I was not prepared to accept this institutionalised homophobic attitude. I chose to challenge the establishment and embraced the activist within. Speaking out for those like me who are being ignored or the ones without a voice was the only option I felt I had. Globally, this minority group of people are neglected, breaching the “duty of care” which should be provided to the entire community, regardless of their sexuality. Fears about sex, sexuality and haemophilia terribly affected information given during the AIDS crisis in the 1980’s. Sadly, the stigma and hysteria of the AIDS crisis still influences the manner in which the subject of sexuality is dealt with today.
The HIV Charities ignored Us
Sadly, there was very little or no support at all from the mainstream HIV charities. I was a volunteer for an HIV/AIDS charity and they offered no information, advice or support to HIV infected haemophiliacs. When I questioned this, I was told “it wasn’t within their remit”. I am confident with some of the recent changes, this might be about to change, fingers crossed.
The Infected Blood Inquiry
It has taken more than 30 years of campaigning to get this inquiry. Pressure from victims, lords, ladies, official bodies, legal challenges and politicians placed on every government from Margaret Thatcher to Theresa May had been repelled. Following an unprecedented letter of support from all opposition leaders to the current Prime Minister, the announcement of a public inquiry was made in 2018.
The Inquiry will examine why men, women and children in the UK were given infected blood or infected blood products, the impact on their families, how the authorities responded, the nature of any support provided following infection, questions of consent, and whether there was a cover-up.
I am an infected victim, activist and campaigner, along with being a committee member of the largest campaign group for infected haemophiliacs and their families across the UK. I am also a core participant. The pursuit of justice has not stopped because we now have the inquiry hearing witness statements.
My role to support both victims and the legal teams has recently become more focused on the people caught up in this scandal. Travelling to London, Belfast, Edinburgh and Cardiff is extremely important to me. To physically be there, to offer a hug and support to the people I call friends – who feel like an extended family – cannot be given by anyone outside of our community. I really can say, I understand. I know how the darkness destroys lives and how the pain suffered genuinely feels.
We have to get to the root of this scandal, only then can we truly ensure changes are appropriately made to protect all current and future generations. When profit is placed over life, nobody is safe. Warnings must never be ignored again or when assumptions rather than factual evidence could place lives at risk, robust protocols must be enforced to challenge their reasoning. Better education to empower all people seeking medical advice, it is not wrong to question a doctor, nurse or other medical professional. It might even save your life.