Africans are one of the groups most affected by HIV in the UK. On May 18^th – 19^th the National African HIV Conference was held in central London.

This edition of HIV Weekly provides first-hand accounts of African’s experiences with HIV in the UK. The three testimonies included in this bulletin will be reprinted in the second edition of Living with HIV, which will be published in July.

There’s also a detailed look at some of the latest HIV news.

• HIV and sex: Dislike of condoms is the main reason why some HIV-positive UK heterosexuals have unprotected sex; LGV is still overwhelmingly affecting HIV-positive gay men in the UK.
• HIV and children: Many HIV-positive children in the UK received doses of anti-HIV drugs which were too low.
• Anti-HIV treatment: People with very low CD4 cell counts who have had many AIDS-defining illness and who also have low levels of red blood cells have an increased risk of developing an immune reconstitution illness when they start HIV treatment.

Experiences of HIV-positive Africans in the UK

My life with HIV, by Maureen

I was born in Zambia 1973 and came to England in April 1994 to live with my cousin to help her look after her three children. Soon after, I had swollen legs and I went to accident and emergency where I was told I had an acute febrile illness. I was admitted to Queen Mary’s University Hospital Roehampton. In July 1994 I was asked if they could do a HIV test and I agreed. I didn’t know anything about HIV. Back in Zambia the word HIV was unspoken. I had heard of AIDS which I only associated with death. Three days later I was diagnosed HIV-positive. I was 19 years old when they told me and explained that I was HIV-positive. I was shocked, upset and I couldn’t speak to anyone. Later that day I asked myself why, why me?

When I was told, my auntie and my cousin’s husband were standing there and I could hear them say in my language ‘She has to go back home. Who is going look after her? Who will tell her that we can’t look after her?’

I just wanted someone to say to me that everything will be alright but no one did. The pain I felt in my heart grew stronger and the feeling I had, I knew, wasn’t good. I was lost and confused. No one asked me what I wanted. I needed my mother and father to be there. I started crying. I waited. I agonised with the thought of going back home with this family whom I could see didn’t want me there. To them I was a dead person walking.

I started worrying. When ‘my time’ came would I have anyone to sit at my bedside with me? Another worry was that being the first born in my family meant I was expected to provide for them. How was I going to tell my mummy, daddy, brothers and sisters when I go back to Zambia? Yet it became important to me to accept the situation that I am HIV-positive. I needed to be strong for my family and myself. Again, I kept asking myself why me?

Finally, my aunt made the decision that I would go back and live with them. This was on the condition that I would not talk about my illness nor my feelings. At the same time the children would have returned to school.

I started seeing my consultant and a health advisor at a clinic in south west London. At first, appointments were weekly then monthly. My CD4 count was 460. In January 1997 my viral load was tested for the first time and it was 750,000. I was told that such a high level suggested I was at risk of becoming ill because of HIV in the near future. In February 1997 my doctor from the clinic phoned to say and asked me to come in and see him. I asked why, and was told it was time to start taking anti-HIV drugs. I remember falling down on the floor with the phone in my hand. As I was having lunch with my cousin and the children, my cousin took the phone from me and started talking to my doctor. The silence, sadness, everything came back again and the things I wanted to stay in the past started to invade my thoughts and were here again with me in the future.

The thought of taking the medication everyday of my life was like the feeling of drowning. I felt the pain coming back again and I was in shock.

Later I gave myself a good talking to, and made the decision to accept and start taking the medication. Unfortunately, I started having side-effects, feeling tired all the time but worst of all I couldn’t tell anyone how I was feeling. I kept waiting for someone to talk to, but the pain inside me was growing everyday.

Living with HIV changed everything in my life. In late 1997 I moved to central London and registered at a new HIV clinic. In 2000 I developed resistance to the drugs I was taking. I had a break from the drugs between November 2000 and November 2002. Then I started taking different medication and again started to have side-effects. I was feeling tired, dizzy, with diarrhoea and nausea. I changed the drugs again. I had a different set of side-effects. My stomach grew and I looked like I was pregnant. I didn’t like it. Once when I was on the bus someone offered me a seat and said ‘in your condition you shouldn’t be standing, have a seat.’ I was upset and looking at this person I said ‘no thank you, I am not pregnant.’ Everyone looked at me. I could feel what they were thinking and saying in their hearts. After that the feeling I had wasn’t good and I started crying. I felt pain, hate and anger every time I thought about HIV.

Now I know I am not alone. I have support from other people and I give support to others as well. I think living with HIV has made me stronger and I believe that once I accepted it and learnt to move on, life became easier. But I have to say I wouldn’t wish this on anyone in the world. I think being HIV-positive made me not want to be in a relationship with anyone, but yes, I would like to find someone who will accept me for who I am.

Giving hope to others

I want my experiences to give hope to other people - things do not have to end when you find out that you have HIV.

In 2000 I arrived in the UK from Zimbabwe and in 2001 I started a new relationship with a man from a country where many people have HIV. To help protect ourselves against HIV and sexually transmitted infections we both went for tests. His test for HIV was negative. Mine was positive.

My initial reaction was fear. I thought that having HIV would mean that I would die in two or three years. My brother in Zimbabwe was very supportive and he told me that drugs were available that could help people with HIV live for longer.

Support also came closer to home. My HIV consultant and the nurses at my HIV clinic were very helpful and understanding and they put me in touch with support groups for Africans with HIV.

One of my big concerns was that I thought having HIV meant that I would die without ever having a child. You know, I was 34 when I found out I had HIV, so the biological clock was already ticking. And there is a real expectation in my culture that a woman should have a baby.

At a support group I attended, a speaker from Positively Women explained that it is possible for a woman with HIV to have an HIV-negative baby. I met an HIV-positive man in 2002 and became pregnant.

But six weeks later I was dispersed from London to Manchester. I was very concerned because I'd had a miscarriage shortly before and feared that the stress of dispersal would cause me to miscarry again.

Even though I was HIV-positive and pregnant, I had to find an HIV clinic by myself - I did so using the Yellow Pages.

I'm glad to say that in 2003 I had a very healthy HIV-negative baby. My own health was good and my viral load was low so I only needed to take AZT during the last few months of pregnancy. I was even able to have a vaginal delivery, not a caesarean. My baby took a few doses of AZT after she was born. She is beautiful and very healthy.

My own health is very good - my CD4 cell count did dip when I was pregnant but it is now 580 and my viral load is only 68. My consultant said it would be many years before I need to start HIV treatment.

My immigration status has been a big worry. In 2003 my asylum application was refused - at a time when I was pregnant - and I really did fear that I would be deported. But because I'm from Zimbabwe I was advised to make another application which is still ongoing.

I have my HIV consultant to thank for putting me in touch with good immigration specialists when I was first diagnosed and THT and George House Trust have also provided very good support.

Nor can I forget the support I have received from other people with HIV in the UK – and they haven’t all been Africans! It has been wonderful.

But there has been discrimination and stigma. When I was first dispersed to Manchester, somebody I had to share with searched through my bags and found letters saying I had HIV. This person told other people I shared with and they asked me how I got infected with HIV. The worst thing is when you experience stigma from other people who have HIV.

Thanks to George House Trust I was moved and have my own place where I know my daughter and I are safe. But I still do worry - what will happen to me if we were sent back to Zimbabwe and I cannot get anti-HIV drugs? Thankfully I have sisters and I know that they will bring up my child if I die.

My experiences have taught me that it is really important not to give up hope when you find out you have HIV. Knowing that you have HIV means that you can start seeing a doctor who can help stop you becoming ill. Also, it's important to get help as soon as possible over immigration problems - don't ignore these problems if they come up as they will not go away.

So I'll finish my saying, when you find out you are HIV-positive, try and keep up a positive attitude, it really made a difference for me.

Headaches

In October 2000 I arrived in the UK from Zimbabwe. I went to live in Bristol with my then partner. Things went okay, and I went to college and then was granted a work visa and right to remain in the UK.

Since childhood, I’ve have had headaches, and in the spring of 2005 I went to see my GP because of them. My GP was concerned about my headaches and said I should go for an HIV test. An appointment was also made for me to see a specialist about my headaches.

My HIV test was positive and my headaches intensified. I went to work the day after I found out I had HIV, but the day after my headaches were so bad I had to spend the day in bed. The day after that I was admitted to hospital.

I more or less passed out as soon as they admitted me and I’m not really sure what happened for the next three weeks. Initially tuberculosis was suspected, but eventually they diagnosed cryptococcal meningitis and I was treated for it. I was in hospital for three months.

I started antiretroviral treatment, my CD4 cell count was very low at only 72.  This caused me to have strange dreams. My doctor explained that these were a side-effect of the efavirenz as I was taking as part of my anti-HIV combination.

Even though I did not feel very well I was discharged from hospital and went home. The only support I received was from a care assistant who did my shopping for me.

Soon I became ill again and spent another three months in hospital. I was very unstable on my feet, and had I had loads of tests, including lumbar punctures which were very uncomfortable and an operation to remove fluid from my brain.

When I was discharged from hospital, I was provided with support from a nurse who visited me in my home and from a social worker. I’ve also received support from THT in Bristol and I am now a volunteer there.

My anti-HIV treatment is working and my CD4 cell count has been steadily improving. I make sure that I always take my medicines so that they work properly.

Sexual health

A lot of the news published on aidsmap.com last week focused on sexual health.

Good sexual health is important to everybody, but is especially important to people with HIV as some sexually transmitted infections can cause long-term health problems and others can increase the risks of HIV being passed on to another person during unprotected sex.

Heterosexual condom use

Condoms, when used correctly, provide excellent protection against HIV and most other sexually transmitted infections. A study conducted involving heterosexuals attending an HIV clinic in central London found very high levels of condom use, with almost three-quarters saying they used them the last time they had vaginal sex. Dislike of condoms was the main reason for not using them. The overwhelming majority of people disclosed their HIV status to their partners before sex.

Terence Higgins Trust recently published a new leaflet about telling people that you have HIV which considers the issues you need to think about before telling your sexual partners that you have HIV.

LGV cases in the UK

In 2004, an outbreak of a sexually transmitted infection called lymphogranuloma venereum (LGV) was reported in the Netherlands. This infection is common in many parts of the world but became very rare in Europe and the United States after the introduction of antibiotics in the 1940s.

The 2004 outbreak in the Netherlands involved a network of gay men, most of whom were HIV-positive and cases were soon seen across Europe and the US, once again mainly affecting HIV-positive gay men.

It soon became clear that LGV was also present in the UK, and once again HIV-positive gay men were predominantly affected. According to the latest information there have now been 350 cases of the infection in the UK, nearly all in gay men. Once again, HIV-positive gay men are disproportionately affected, accounting for 75% of cases.

LGV is spread by unprotected sex. It can affect the genitals or the anus. Most of the cases seen in the current outbreak have involved infection in the anus. Symptoms include pain, a bloody discharge of mucus from the anus, swollen glands in the groin and flu-like symptoms. If the infection is in the genitals, symptoms can also include flu-like symptoms as well as a discharge and swollen glands.

You can get tested for LGV as part of a general sexual health check-up. It’s important to tell the healthcare staff you see for a sexual health screen exactly what kind of sex you’ve been having, so they can make sure that you have the right tests.

LGV can be successfully treated with three weeks of the antibiotic doxycycline.

If left untreated, LGV can cause very serious health problems. It can cause a tear, or fissure to develop in the anus which can become infected and lead to an accesses developing in the muscle tissue called a fistula. This requires treatment with antibiotics or even surgery.

HIV and children

HIV-positive children can live a longer, healthier life with potent anti-HIV treatment. But there are fewer antiretroviral drugs available for the treatment of children than adults, and the drugs are often not available in special formulations that would make them easier for children to take. Adherence – taking treatment properly – can also be a real problem for many children and many children taking HIV treatment now have resistance to at least some anti-HIV drugs.

A recent study has found that difficulties calculating what dose of anti-HIV drugs to give to children has resulted in many children receiving doses of anti-HIV drugs that are too low.  

The doctors who conducted the study blamed a lack of special formulations of anti-HIV drugs for children and a failure by doctors to adjust doses as children grew.

Anti-HIV treatment

Potent anti-HIV treatment has lead to a dramatic fall in the amount of illness and death caused by HIV in countries like the UK.

A small number of people with weak immune systems and low CD4 cell counts who start anti-HIV treatment develop what is called an immune reconstitution illness. It is thought that these occur because the recovering immune system recognises infections and attacks them causing illness to develop.

Doctors in America suggested that an immune reconstitution illness could be diagnosed if the following criteria were met:

• New or worsening symptoms of an infection after starting anti-HIV treatment.
• Symptoms that couldn’t be explained by a new infection.
• A substantial fall in viral load after starting HIV treatment.

They found that people who had had more AIDS-defining illnesses before they started anti-HIV drugs and who had low levels of red blood cells (haemoglobin) were much more likely to develop an immune reconstitution illness.