Awareness
World AIDS Day: Mark Ward
Written by Aaron Dennis, December 1, 2022
Mark Ward is the Haemophilia Society’s LGBT Ambassador. He has spent all his adult life campaigning to raise awareness about living with HIV, equality and diversity after being infected with the virus as a child through treatment with contaminated blood products.
Today he explains what World AIDS Day means to him.
‘Over the past four decades, World AIDS Day has become a day which symbolises numerous things.
It is a day of remembrance for thousands across the UK still on the emotional rollercoaster of love, grief and sadness despite the passage of time. For many across the global haemophilia community and others impacted by HIV/AIDS the lack of recognition has turned sick and grieving people into HIV activists.
The greatest emotion felt by almost everyone touched by AIDS is reflection.
Some people get through the day with a sense of celebration, for the time shared with the beautiful people taken from them. Whilst long-term survivors live with damaged bodies and psychological scars which can never be fully healed.
For those who continue not only to live but to thrive, seeing each passing year as another milestone never thought possible in the 1980s brings a barrage of emotions, including guilt mixed with happiness. This is an important part of our collective story which shouldn’t be downplayed. Some of us did survive and are now continuing the work of those brave enough to speak out. They risked their safety by demanding answers and ensuring that their voices were heard through the darkness and fear. Some of them are still longing for justice, the truth and the chance to call out cruelty. They may be broken, existing in complicated lives but are still asking the awkward questions those playing the system don’t want to answer, as well as fighting their demons.
Our voices, although constantly shrinking in number have got louder. In this historic anniversary year, 40 years since AIDS was officially recognised, we have heard from government ministers, civil servants, experts and more importantly those people living with the impact of their infection at the biggest public inquiry in British history.
The Infected Blood Inquiry has heard from those who made the life and death decisions which impacted all those torn apart by HIV. They designed a narrative to be deliberately divisive and exported the blueprint on how other countries could respond to the emerging threat in the early 1980s and beyond.
This year’s candlelight vigils, held to remind the rest of the world about the horrors suffered both in the past as well as today across large parts of the globe, might shine a little brighter with the feeling of validation from evidence heard by Sir Brian Langstaff, Chair of the Infected Blood Inquiry, the British public and the wider world. As our amazing community waits for the final report from Sir Brian there is a unified hope that we will see justice before next year’s anniversary.
It’s difficult to believe that in 2022, people with bleeding disorders harmed through the use of contaminated blood products are still going unrecognised in major civilised countries. Their pain, suffering and further harm goes unsupported, treated as a dirty secret that nobody wants to talk about.
The stigma of AIDS is now having a greater impact on peoples’ lives than the virus. This can be turned around through political will, better education and compassion.
Our younger generations with a bleeding disorder who have living relatives or have been told about close relatives taken by AIDS feel a much deeper understanding of the tragedy our small community faced. Whilst at the same time those in the general population know very little, if anything about the AIDS crisis.
Wonderful TV programmes like the beautifully written ‘It’s a Sin’, which made reference to the haemophilia community, and ‘Pose’ highlighting racism, discrimination and the huge scale of deaths witnessed in New York City enabled people from across the global LGBTQ+ community to not just watch but laugh and cry as they saw what people just like them had to suffer. Such a powerful history lesson. Whilst those not connected to the LGBTQ+ community were provided with an education which has hopefully led to a much better understanding of the destructive impact AIDS had across the gay community.
Yet, World AIDS Day itself appears to be an unknown to a lot of people and even less people know about the day from outside of the UK, including those from the LGBTQ community.
Wearing my red ribbon prompts lots of people to ask what it stands for, but many tell me they hadn’t heard of it. Have those loved and lost been forgotten or seen as something that happened such a long time ago and everyone has now simply moved on? It’s extremely difficult to know for certain but it does feel that way to me at times.
Another set of circumstances which are completely unknown are the outdated and discriminatory laws imposed on people for living with a controllable health condition, as HIV now is. In a connected world why should people living with HIV be banned from entering countries? Our freedom is still controlled despite sound knowledge and data. These restrictions must be challenged at the highest levels of all governments. Equality doesn’t have terms and conditions, no barriers or judgements.
How many more decades must people be punished for decisions made by previous governments based on homophobia and bigoted beliefs rather than science?
The tragic circumstances for those in developing countries is equally as shameful. Their citizens are simply left with nothing. No hope, no compassion or future. This places a huge strain on the people trying to pick up the pieces through wonderful humanitarian work, such as the charity ‘Save One Life’.
Whilst we must never forget or allow the failures of the past to be repeated, we can look forward to a world where AIDS is pushed into the history books.
The huge advancements in treatment along with a greater knowledge of the virus has enabled us to optimistically see an end to new transmissions. The goal of zero new transmissions by 2030 is within touching distance. Together, we can achieve this historic goal knowing another generation can be spared its destruction.
The work surrounding the U=U initiative has given people some piece of mind knowing they cannot pass on the virus when their HIV is undetectable, controlled with antiretroviral medication. Stopping the virus in its tracks.
How you personally see World AIDS Day is unique and whatever you do, I wish you all a safe, peaceful day sent with love. ‘
Read More: World AIDS Day blog