Three things have happened to me in the last two weeks which have given me real food for thought. First, as an HIV specialist consultant, I found myself redeployed to the world of the COVID-19 Intensive Care Unit; secondly, National HIV Testing Week began; and thirdly, I watched the fantastic Channel 4 drama It’s A Sin by Russell T Davies.
All of these things have made me consider the similarities and parallels between the early days of the HIV epidemic that has defined my professional life, and the pandemic we find ourselves in today, which has transformed all of our lives over the last year.
I think the thing that resonates the most is the absolute human suffering that a microscopic virus can cause. It’s A Sin’s powerful narrative really highlights the pain of a mother seeing her son die, isolated in a ward by himself as she is unable to touch him, unable to comfort him.
The same is true on the ITU wards today: dressed in full PPE, and wearing a tight-fitting mask and visor, I’ve been seeing young men and women fighting for breath, ventilated and struggling with organ failure. And the thing I’ve found most distressing is the fact that their relatives cannot be with them, due to the danger of contracting the virus themselves.
Back in the early days of the HIV/AIDS epidemic, I worked on Ward 29 of Birmingham Heartlands Hospital, where I now attend COVID-19 patients in the ITU. Back then, our wards were full of young men and women who were dying, wasting away to nothing with tubes coming out of their chest. We knew at that time that for some people their immune system was so damaged we could do little except palliate and make them comfortable. Many of them were scared and often had no time to make peace with their misinformed and estranged families before they died. So many sons, brothers, and friends had their lives cut short in the prime of their lives.
One of my patients was a young woman called Marcella. She was one of the first heterosexual patients I looked after, she recalls that in the early days she was very much treated by society like a leper. Beyond the HIV ward, many people were – wrongly, of course – terrified that they might catch “the AIDS” just by touching her or looking after her.
Marcella went to ITU, like the COVID patients I’ve been treating in recent weeks. At that time it was felt there was very little chance of her coming out. However, one of the nicest women I know proved them all wrong: she rallied and became one of the first recipients of the new drug cocktails which were hailed at the time for bringing people back from the brink.
I’m pleased to say that Marcella is still with us today – and after sepsis, pneumonia, renal failure, years of dialysis, a renal transplant, she has recently felt able to come out and say she’s HIV positive. That’s real progress – her story offers real hope.
Fast forward to last week, as I watched another forty-year-old with tubes coming out of his arms and neck having to go on dialysis while a ventilator kept his breathing going. The dedicated and exhausted staff are doing everything they can, hoping that the new treatments and unconditional support they’re giving him will bring him, too, back from the brink.
There are other parallels, as well. The fact that there is a section of society that continues oblivious, for instance: the vaccine deniers, the COVID deniers, those who think that the virus is a conspiracy and something that will never affect them. In the early days of HIV, it was even worse: not only did people think that it couldn’t affect them; they thought it affected only people who were in some way deviant or deserved to be punished for their sexuality.
It’s A Sin brilliantly portrays the denial of even those that the virus affected most, their misplaced refusal to accept a reality that their community may be faced with for a long time. Similarly, the after-effects of COVID are going to go on far after we gain control over the virus.
There’s also the sense of isolation and fear that patients diagnosed with HIV and COVID experience. Having had quite severe COVID myself during the first wave, I think one of the things that hit me hardest was the psychological impact of feeling alone and scared and not knowing what was going to happen to me. In the early days of the HIV/AIDS epidemic, too, patients on non-specialist HIV wards were, as illustrated in It’s A Sin, faced with painful loneliness and fear of what was happening to them: why are people avoiding me? The fear of dying was then, and can be now with COVID, all too real.
Mixed with all this sorrow, pain and anguish, however, is the hope of Marcella: that things can change. The timing of It’s A Sin is in this way very apt. This week is National HIV Testing Week, something that has been dwarfed by the all-consuming coronavirus pandemic, but which nevertheless offers us the chance to make a big difference.
There are people still dying of HIV/AIDS, but not because we don’t have effective treatments. They are dying because they haven’t or won’t be tested, they won’t accept it can happen to their communities, to heterosexuals or to those who believe that God will protect them. All around the world millions of dead contest those beliefs.
What’s more, those infected but not tested can unknowingly infect others and develop life-threatening infections that could have been avoided. Getting tested allows you to take back control. If you’re negative, you can concentrate on remaining negative. If you do test positive there is now treatment, giving you a life expectancy the same as that of the general population.
Not only that, but we also now know that U=U – that the Undetectable viral loads achieved by today’s medicines result in the virus becoming Untransmittable. In other words, people with HIV who are on treatment can be in the situation of not having to worry about passing on the virus to their partners. This is incredible progress – as miraculous in its own way as that marvel of modern science, the coronavirus vaccine.
These last few weeks remind me of the very dark days of HIV and revived my memories of all those people who were diagnosed before effective treatment was available. That same pain and misery is being suffered by some families today, and I see it each day on the ITU. It’s easy to throw up your hands in despair; but there are things we can do.
If someone tells you they’re HIV-positive, ask about it, learn about it – and get yourself tested. And when it comes to COVID: please wear a mask, stay socially distanced, and get yourself vaccinated. We owe it to each other – and to those who came before us.
In fact, while we’re all spending more time at home, why not get yourself tested for HIV? The Saving Lives charity, www.savinglivesuk.com as well as other organisations, are offering free postal testing kits to mark National HIV Testing Week. Visit www.freetesting.hiv for yours.
Dr Stephen Taylor, MBChB FRCP, PhD
Consultant Physician, Sexual Health and HIV Medicine
Clinical Research Lead, Birmingham Heartlands HIV Service
Tri-Service Consultant Advisor, HM Armed Forces
Hon Reader, University of Birmingham
Medical Director, Saving Lives Charity
This is such a powerfully moving testimony – full of wise observation and written with warmth and compassion.
Thank you, Steve for this blog. I, too, have thought of the comparisons between AIDS and Covid. I have also known friends who have died of AIDS and also know of people who have come to live normal lives because of drugs, as we will eventually with Covid. I didn’t know AIDS could be made non-transmissible. An excellent analysis and of course those stupid people who don’t take Covid or AIDS seriously…
Bryan
We’ve come so far from those dark days when I was losing friends evey week. Triple combination therapy saved my life and I will be eternally grateful to the wonderful staff at Heartlands for all they’ve done for all HIV patients over the years. Keep up the good work in this new pandemic, you all deserve our support. Keep distance, wear a mask wash your hands, help stop the spread of this virus!
Finished “It’s a Sin” last night.?. Brilliant programme. Cried a bit!
I too was working on Ward 29 in 1990 as part of my GP rotation. Much sadness with young men dying in isolation cubicles but such a compassionate team caring for them. (MO and JR ?). I also did some locum work in Steelhouse Lane. Great patients, so lovely and so much humour. Again, brilliant doc and nursing team, I learnt so much including getting past some of my prejudice, all for the better.
What can I say Steve, fabulously well articulated. I have watched 3 episodes of It’s A Sin thus far and am immediately transported back to the mid 80’s, when I cared for my first patient with AIDs. My heart broke for him. So terribly ill and suffering, yet exposed to the most horrendous attitudes and behaviour from some in society – the stigma a response to understandable fear, although this could not always excuse the inhumanity sometimes displayed. I knew immediately that I had to be a part of making a difference – to help, to comfort, to have fun, to ease suffering, to care, to love, to remember.
I am so moved watching this marvellous work by Russell T Davies, emotionally it feels like he has stood in the shoes of all who were affected by HIV/AIDS during that painful time. I try not to cry, but it is impossible. I remember those brave young men, their faces, their names, their families, their friends, their suffering, their fear, their deaths and their funerals. I went to many funerals. We have much to thank them for, those brave boys. They enabled us to learn so much, and whilst research couldn’t save them, it has saved the lives of so many since. Alan, Tom and many more …… over 35 years ago, but I will NEVER forget you. I know you would have jumped at the chance to take the effective medication we have available now. To have lived, loved and been happy for so much longer than HIV permitted. You deserve that people learn and understand. I urge everyone to watch It’s A Sin, and then update themselves about HIV in 2021. Nobody should experience stigma because of a health condition. I’ve worked with some fantastic people, seen massive advances in knowledge, care and treatment and had an incredibly rewarding career – one that started with a lovely young man, who died many, many years before his time.
As for covid – it took the life of a dear friend of mine. I haven’t felt able to go through the emotional trauma of working through another pandemic, but I have nothing but the highest praise for my colleagues, who really are battling on the frontline to save lives. You are incredible individuals and that should never be forgotten. Maxine xxx
Well written article and very good comparison of Covid and HIV but feel the stigma is the same. Thank you for all the research, testing and campaigning you continue to do. Always have your patients at heart. Proud to have been looked after by you. Keep up the good work Dr Steve Taylor
A poignant article written with compassion, thank-you. “Its a Sin” was brilliantly made and brought back so many memories. In the 1980s it was hard to imagine that such progress could be made on treatment. I worked as a nurse looking after the first AIDS patients, it was harrowing and often lonely for those infected whose families sometimes did not know their status. I later met the man who became my husband, a haemophiliac infected with HIV and hepatitis C through contaminated blood products made from the plasma of US prisoners. I remember not only my patients who suffered greatly at a time when there was no effective treatment but the gay nurses who worked alongside me and showed tremendous care for others whilst dealing with their own infection. My brother in law also a haemophiliac was 20 when he died, he had a large facial lymphoma, went blind and had AIDS related dementia, so much potential, so little time. My kind, funny and brave husband lived longer but suffered greatly also. In the haemophilia community we lost over 3,000 haemophiliacs, some partners, also children and many dear friends. Times have moved on…its so important to get tested today when there is amazing treatment on offer which also prevents infection. I got tested several times, my tests showed I was not infected. These days its so much easier, a lot less stigma and a great deal of positive support. Its possible now to have a good life and once on treatment you are taking responsibility and not putting partners at risk… so look after yourself, care for others and enjoy the years ahead!