In the late 1990s, Carole Gilling-Smith, Founder and Medical Director of The Agora, established the first treatment programme in the UK to enable HIV positive men to have children without the risk of passing on the virus. This programme involved using a technique known as ‘sperm washing’ which meant HIV negative partners could safely become pregnant via insemination. Carole was then involved in campaigning to have this treatment funded by the NHS, enabling more men with HIV to become parents without risk to their children or partners.
Today, drug therapies have advanced so that, with newer antiretroviral therapies, men and women with HIV can become parents through natural intercourse without passing on the virus.
Perry Evans, a father of two who contracted HIV in the early 1980s through an infected blood transfusion, was one of the first men to safely become a father as a result of Carole’s work.
I found out in 1985 – at the age of 23 – that I was HIV positive as a result of treatment with blood products for my haemophilia. The outlook at the time was bleak; there was no cure in sight and I was told that I had between two and five years left to live. I was also told that I must be careful not to pass on the virus to anyone else and that I should never have children because they would also be infected.
Although I already had haemophilia – another lifelong illness – I’d always tried to lead a normal life and I’d never used my health as an excuse; after all, lots of people have physical and mental health issues. So, after the HIV diagnosis, I told only my close family and returned to work as a software engineer. Ironically, for several years after this, I showed no symptoms.
In 1987 I met Heather, and we got married a year later. I’d told her about my HIV on our second date and explained that I wouldn’t be able to father children and had only a few years to live; amazingly, she’d decided to carry on seeing me – and we’re still married nearly 30 years later!
As time went on, I was happy to help science by taking part in clinical trials for new therapies, whether or not the drugs would actually work for me. In the early 90s there were trials of some drugs which had really unpleasant side-effects, and by 1996 I’d had to stop work because I had no energy and my immune system was so poor that there was a high risk of infection from other people. I took six months out and, during this time, began a new treatment known as ‘triple therapy’. Again, the side-effects were dreadful but I stuck with it and, within three months, I was well enough to return to work.
Heather and I had lots of friends with children and, although we felt sad, we’d resigned ourselves to the fact that we wouldn’t have any of our own. However, in 1999 we heard about some pioneering work helping men with HIV to become fathers being carried out by Carole and her team at the Chelsea and Westminster Hospital. We made an appointment to meet Carole and began the process, which involved ‘washing’ my sperm so that the virus wouldn’t be passed on to our children. As with many fertility treatments, it was an emotional rollercoaster – especially for Heather – and we weren’t successful straight away. It took several attempts before we were able to have Isaac, who was born in 2001.
Although we’d told close friends and family about my HIV, there was a period in the early years when we didn’t tell anyone else. We felt we needed all our energy just to try to lead a normal life, and we didn’t have any left to deal with other people’s reactions. At the time, there was also a lot of stigma associated with HIV due to a lack of public education, and we certainly didn’t feel confident enough to be the ‘standard bearers’ to change this.
After we had Isaac, however, I felt that remaining silent was only adding to this stigma. I decided I had nothing to lose; after all, I was in a loving relationship, supported by family and friends. I realised that, if others had prejudices, then it was their problem not mine; if they couldn’t handle it, then that would be sad but I could live with it. I also wanted people to realise that HIV can happen to anyone and that it should be treated in the same way as any other illness – without stigma. So, at Isaac’s baptism, I stood up in our Church and explained our situation in the context of a God who loves me and everyone else, whether or not they have HIV or any other illness. Everyone was amazed and somewhat in awe of our experience of having a healthy baby, and they proved to be very supportive and caring.
Shortly after we had Isaac, I was diagnosed with non-Hodgkin lymphoma. Before I began treatment, I was able to freeze some sperm so that we could conceive our daughter, Cerian, again with the help of Carole and her team.
Living with HIV has helped me put things into perspective. It’s made me so thankful for the time I’ve been given with the people I love. I don’t sense that there’s a lot of stigma in my life, perhaps because I’m surrounded by open-minded and tolerant people.
Today, HIV is no longer the terrible death sentence it was when I was diagnosed 30 years ago, although longevity carries many medical battle scars. We have some amazing treatments that are available to everyone and new drugs mean that there are fewer side-effects and a normal life expectancy. There’s also no reason nowadays why men with HIV can’t father a child naturally, without the need for fertility treatment. It’s true that people with HIV have to manage their illness, follow a drug regime and, of course, it affects their health insurance and some of the countries they can visit – but this is also true of many other illnesses.
As parents, we are so indebted to the work of Carole and her team. The fact that we have Isaac and Cerian is amazing. You live your life again through your children, they touch your heart, and it’s a beautiful experience. Sometimes I look back on the day I was told I’d never have a family, and the rollercoaster experience that resulted in our family, and I’m so thankful for the work that has been done – and continues to be done – in this country. My hope for the future is that I can continue to fight my illnesses and see my children grow up.
World Aids Day is organised by the Terrence Higgins Trust with the aim of raising funds to tackle stigma and support people living with HIV.