HIV and AIDS

HIV and AIDS

Introduction

HIV is a virus which attacks the immune system, and weakens your ability to fight infections and disease. It’s most commonly caught by having sex without a condom.

It can also be passed on by sharing infected needles and other injecting equipment, and from an HIV-positive mother to her child during pregnancy, birth and breastfeeding.

HIV stands for human immunodeficiency virus. The virus attacks the immune system, and weakens your ability to fight infections and disease.

There is no cure for HIV, but there are treatments to enable most people with the virus to live a long and healthy life.

AIDS is the final stage of HIV infection, when your body can no longer fight life-threatening infections. With early diagnosis and effective treatment, most people with HIV will not go on to develop AIDS.

How do you get HIV?

HIV is found in the body fluids of an infected person, which includes semen, vaginal and anal fluids, blood, and breast milk. It is a fragile virus and does not survive outside the body for long. 

HIV cannot be transmitted through sweat or urine.

The most common way of getting HIV in the UK is by anal or vaginal sex without a condom. According to statistics from Public Health England, 95% of those diagnosed with HIV in the UK in 2013 acquired HIV as a result of sexual contact.

Other ways of getting HIV include:

  • using a contaminated needle, syringe or other injecting equipment
  • tranmission from mother to baby during pregnancy, birth or breastfeeding
  • through oral sex or sharing sex toys (although the risk is significantly lower than for anal and vaginal sex) 

Read more about what causes HIV.

Getting tested

The only way to find out if you have HIV is to have an HIV test.

If you think you have put yourself at risk of HIV, you should seek medical advice and have a test as soon as recommended. The earlier HIV is diagnosed, the earlier you can start treatment and avoid becoming ill.

Emergency anti-HIV medication called PEP (post-exposure prophylaxis) may stop you becoming infected, but treatment must be started within three days of coming into contact with the virus.

There are a number of places you can get an HIV test, including your GP surgery and sexual health clinics and clinics run by charities including the Terrence Higgins Trust.

Most HIV tests in the UK involve taking a small sample of blood and sending this to a laboratory for analysis. These tests can provide a reliable result from four weeks after possible infection and results are usually available within a few days. It is also possible to test using a saliva sample or pin-prick (blood-spot) test, and many sexual health clinics now use these tests routinely as the result is available within a few minutes and do not need to be sent to the lab. However, these tests do not reliably detect HIV if you have been infected within the past few weeks.

You may get the results in hours, days or weeks, depending on the type of test you take.

If your test is positive, you will be referred to a specialist HIV clinic where you’ll have more blood tests to show what effect HIV is having on your immune system and be able to discuss treatment options.

Find out more about coping with a positive HIV test.

Anyone who has sex without a condom or shares needles is at risk of HIV infection. However, the two groups with highest rates of HIV in the UK are gay and bisexual men and African men and women.

NICE recommends that annual HIV tests be offered to all men who have sex with men, and more frequent testing be offered to those at higher risk due to multiple partners or unsafe sexual practices.

Screening for HIV in pregnancy

All pregnant woman are offered a blood test to check if they have HIV as part of routine antenatal screening. If untreated, HIV can be passed from a pregnant woman to her baby during pregnancy, birth or breastfeeding. Treatment in pregnancy greatly reduces the risk of passing on HIV to the baby.

Read more about screening for HIV during pregnancy.

Living with HIV

Although there is no cure for HIV, treatments are now very effective, enabling people with HIV to live long and healthy lives.

Medication, known as antiretrovirals, work by stopping the virus replicating in the body, allowing the immune system to repair itself and preventing further damage. These medicines come in the form of tablets, which need to be taken every day.

HIV is able to develop resistance to a single HIV drug very easily, but taking a combination of different drugs makes this much less likely. Most people with HIV take a combination of three antiretrovirals and it is vital that the medications are taken every day as recommended by your doctor.

You will be encouraged to take regular exercise, eat a healthy diet, stop smoking and have yearly flu jabs and five-yearly pneumococcal vaccinations to minimise the risk of getting serious illnesses.

Without treatment, the immune system will become severely damaged and life-threatening illnesses such as cancer and severe infections can occur. This is known as late-stage HIV infection or AIDS.

Read more about living with HIV.

Preventing HIV

Anyone who has sex without a condom or shares needles is at risk of HIV infection.

The best way to prevent HIV is to use a condom for sex and to never share needles or other injecting equipment (including syringes, spoons and swabs). Knowing your HIV status and that of your partner is also important.

How common is HIV?

At the end of 2013, there were an estimated 107,800 people in the UK living with HIV. The majority were infected through sex (43,500 gay and bisexual men and 59,500 heterosexuals).

A quarter of people with HIV (over 26,100) do not know they are infected.

Around one in every 360 people in the UK has HIV, but the two groups with highest rates of HIV are gay and bisexual men and Black African heterosexuals, where the rates are approximately one in 17 and one in 18 respectively.

The World Health Organization estimates that around 35 million people in the world are living with HIV.

The virus is more common in sub-Saharan African countries, such as South Africa, Zimbabwe and Mozambique.

Find out more about:

Symptoms of HIV

Most people who are infected with HIV experience a short, flu-like illness that occurs two to six weeks after infection. After this, HIV often causes no symptoms for several years.

The flu-like illness that often occurs a few weeks after HIV infection is also known as seroconversion illness. It’s estimated that up to 80% of people who are infected with HIV experience this illness.

The most common symptoms are:

  • fever (raised temperature)
  • sore throat
  • body rash

Other symptoms can include:

  • tiredness
  • joint pain
  • muscle pain
  • swollen glands (nodes)

The symptoms usually last one to two weeks but can be longer. They are a sign that your immune system is putting up a fight against the virus. 

However, these symptoms are most commonly caused by conditions other than HIV, and do not mean you have the virus.

If you have several of these symptoms, and you think you have been at risk of HIV infection within the past few weeks, you should get an HIV test.

After the initial symptoms disappear, HIV will often not cause any further symptoms for many years. During this time, known as asymptomatic HIV infection, the virus continues to be active and causes progressive damage to your immune system. This process can take about 10 years, during which you will feel and appear well.

Once the immune system becomes severely damaged symptoms can include:

  • weight loss
  • chronic diarrhoea
  • night sweats
  • skin problems
  • recurrent infections
  • serious life-threatening illnesses

Earlier diagnosis and treatment of HIV can prevent these problems.

Read more about treating HIV.

It is recommended you should still take an HIV test if you have put yourself at risk at any time in the past, even if you experience no symptoms.

Want to know more?

 

Causes of HIV

In the UK, most cases of HIV are caused by having sex without a condom with a person who has HIV.

A person with HIV can pass the virus to others whether or not they have any symptoms. People with HIV are more infectious in the weeks following infection.

HIV treatment significantly reduces the risk of someone with HIV passing it on.

Sexual contact

According to Public Health England, 95% of people diagnosed with HIV in the UK in 2011 acquired HIV through sexual contact.

The main routes of transmission are unprotected vaginal and anal sex. It is also possible to catch HIV through unprotected oral sex, but the risk is much lower.

The risk of HIV transmission through oral sex will be higher if the person giving oral sex has mouth ulcers, sores or bleeding gums and/or if the person receiving oral sex has been recently infected with HIV (and has a lot of the virus in their body) or another sexually transmitted infection.

The type of sex also makes a difference to the level of risk:

  • performing oral sex on a man with HIV carries some risk, particularly if he ejaculates (comes) in your mouth
  • it is possible to catch HIV by performing oral sex on a woman with HIV, particularly if she is having a period, although this is considered to be extremely low risk
  • receiving oral sex from someone who has HIV is also extremely low risk as HIV is not transmitted through saliva

Other risk behaviours

Other ways of getting HIV include:

  • sharing needles, syringes and other injecting equipment 
  • from mother to baby before or during birth or by breastfeeding
  • sharing sex toys with someone infected with HIV
  • healthcare workers accidentally pricking themselves with an infected needle (this risk is extremely low)
  • blood transfusion (now very rare in the UK, but still a problem in developing countries)

How is HIV transmitted

HIV is not passed on easily from one person to another. The virus does not spread through the air like cold and flu viruses.

HIV lives in the blood and in some body fluids. To get HIV, one of these fluids from someone with HIV has to get into your blood.

The body fluids that contain enough HIV to infect someone are:

  • semen
  • vaginal fluids, including menstrual blood
  • breast milk
  • blood
  • lining inside the anus

Other body fluids, like saliva, sweat or urine, do not contain enough of the virus to infect another person.

The main ways the virus enters the bloodstream are: 

  • by injecting into the bloodstream (with a contaminated needle or injecting equipment)
  • through the thin lining on or inside the anus and genitals
  • through the thin lining of the mouth and eyes
  • via cuts and sores in the skin

HIV is not passed on through:

  • kissing
  • spitting
  • being bitten
  • contact with unbroken, healthy skin
  • being sneezed on
  • sharing baths, towels or cutlery
  • using the same toilets or swimming pools
  • mouth-to-mouth resuscitation
  • contact with animals or insects such as mosquitoes

How HIV infects the body

HIV infects cells of the immune system, the body’s defence system, causing progressive damage and eventually making it unable to fight off infections.

The virus enters cells in the immune system called CD4 cells + ve lymphocyte cells, which protect the body against various bacteria, viruses and other germs.

It uses the CD4 cells to make thousands of copies of itself. These copies then leave the CD4 cells, killing them in the process.

This process continues until eventually the number of CD4 cells, also called your CD4 count, drops so low that your immune system stops working.

This can take about 10 years, during which time you will feel and appear well. Find out more about the symptoms of HIV.

Who is most at risk?

People who are at higher risk of becoming infected with HIV include:

  • men who have had unprotected sex with men
  • women who have had sex without a condom with men who have sex with men
  • people who have had sex without a condom with a person who has lived or travelled in Africa
  • people who inject drugs
  • people who have had sex without a condom with somebody who has injected drugs
  • people who have caught another sexually transmitted infection
  • people who have received a blood transfusion while in Africa, eastern Europe, the countries of the former Soviet Union, Asia or central and southern America

HIV testing

Some people living with HIV have no signs and symptoms for many years.

People who have recently been infected with HIV often experience a short, flu-like illness two to six weeks after infection. Symptoms include fever, sore throat, and body rash. See symptoms of HIV for more information.

You can only be certain you have HIV if you have an HIV test.

If you think you might be at risk, you should seek medical advice immediately. The earlier HIV is diagnosed, the earlier you can start treatment and avoid becoming ill.

If you do have HIV, delaying diagnosis will allow the virus to cause more damage to your immune system and your health.

The sooner you get tested, the sooner you can start treatment and avoid passing the virus to someone else.

HIV testing is available on the NHS free of charge to anyone. Many clinics can provide test results on the same day the test is taken.

HIV tests

The most common form of HIV test is a blood test, in which a small amount of blood is taken and tested in a laboratory, the result is usually available within a few days, sometimes on the same day. These tests can provide a reliable result four weeks after exposure to HIV.

It is also possible to test for HIV using “point of care test kits” which test a sample of saliva taken from the mouth or a spot of blood taken from pricking a finger with a needle. The result is available within a few minutes, in the clinic. However, it can take up to several week longer after you have been infected with HIV for the virus to show up in saliva and blood spot tests. If you are concerned you may have been infected with HIV within the past few weeks then it’s best to have the full blood test for HIV.

If the test finds no signs of infection, then your test result is “negative”. If the HIV virus has been found in your blood then the test result is “positive”.

If a point of care HIV test kit is used, then a positive result will need to be confirmed using a full blood test. All positive test results should be confirmed with another blood test.  

If you test positive for HIV, you will undergo a number of tests to monitor the progress of the infection to work out when HIV treatment should be started.

Find out more about treating HIV.

Screening for HIV in pregnancy

All pregnant woman are offered a blood test to check if they have HIV as part of routine antenatal screening. If untreated, HIV can be passed from a pregnant woman to her baby during pregnancy, birth or breastfeeding. Treatment in pregnancy greatly reduces the risk of passing on HIV to the baby.

Read more about screening for HIV during pregnancy.

Where to get tested

There are various places to go for an HIV blood test, such as:

  • sexual health clinics, also called genitourinary medicine (GUM) clinics 
  • clinics run by charities such as the Terrence Higgins Trust 
  • some GP surgeries
  • some contraception and young people’s clinics
  • local drugs agencies
  • at an antenatal clinic, if you are pregnant
  • a private clinic, where you will have to pay

You may be offered a test if you see your GP, are admitted to hospital or attend an outpatient clinic with a condition that could be related to HIV.

Home testing kits are also available, which allow you to take a saliva sample or blood spot and send them off to a laboratory for testing. These are available online and from some pharmacies, but you will generally have to pay for them.

From early 2014, it will also be possible to buy self-testing kits that will allow you to test yourself and find out the results immediately. It is important to check that any test you buy has a CE quality assurance mark and is licensed for sale in the UK, as poor quality HIV self-tests are currently available from overseas.

It is your choice where you would be most comfortable having the test.

Find your local sexual health services.

 

Treating HIV

There is no cure for HIV, but there are treatments to enable most people with the virus to live a long and healthy life.

Emergency HIV drugs

If you think you have been exposed to the virus within the last 72 hours (three days), anti-HIV medication may stop you becoming infected.

For it to be effective, the medication, called post-exposure prophylaxis or PEP, must be started within 72 hours of coming into contact with the virus. It is only recommended following higher risk exposure, particularly where the sexual partner is known to be positive.

The quicker PEP is started the better, ideally within hours of coming into contact with HIV. The longer the wait, the less chance of it being effective.

PEP has been misleadingly popularised as a “morning-after pill” for HIV – a reference to the emergency pill women can take to prevent getting pregnant after having unprotected sex.

But the description is not accurate. PEP is a month-long treatment, which may have serious side effects and is not guaranteed to work. The treatment involves taking the same drugs prescribed to people who have tested positive for HIV.

You should be able to get PEP from:

  • sexual health clinics, or genitourinary medicine (GUM) clinics
  • hospitals – usually accident and emergency (A&E) departments

If you already have HIV, try your HIV clinic if the PEP is for someone you’ve had sex with.

Want to know more?

If you test positive

If you are diagnosed with HIV, you will have regular blood tests to monitor the progress of the HIV infection before starting treatment.

This involves monitoring the amount of virus in your blood (viral blood test) and the effect HIV is having on your immune system. This is determined by measuring your levels of CD4+ve lymphocyte cells in your blood. These cells are important for fighting infection. 

Treatment is usually recommended to begin when your CD4 cell count falls towards 350 or below, whether or not you have any symptoms. In some people with other medical conditions, treatment may be started at higher CD4 cell counts. When to start treatment should be discussed with your doctor.

The aim of the treatment is to reduce the level of HIV in the blood, allow the immune system to repair itself and prevent any HIV-related illnesses.

If you are on HIV treatment, the level of the virus in your blood is generally very low and it is unlikely that you will pass HIV on to someone else.

Want to know more?

If you have another condition

If you have also been diagnosed with hepatitis B or hepatitis C, it is recommended that you start treatment when your CD4 count falls below 500.

Treatment is recommended to begin at any CD4 count if you are on radiotherapy or chemotherapy that will suppress your immune system, or if you have been diagnosed with certain other illnesses, including:

Want to know more?

Antiretroviral drugs

HIV is treated with antiretrovirals (ARVs), these work by stopping the virus replicating in the body, allowing the immune system to repair itself and preventing further damage.

A combination of ARVs is used because HIV can quickly adapt and become resistant to one single ARV.

Patients tend to take three or more types of ARV medication. This is known as combination therapy or antiretroviral therapy (ART).

Some antiretroviral drugs have been combined into one pill, known as a “fixed dose combination”. This means that the most common treatments for people just diagnosed with HIV involve taking just one or two pills a day.

Different combinations of ARVs work for different people so the medicine you take will be individual to you.

Once HIV treatment is started, you will probably need to take the medication for the rest of your life. For the treatment to be continuously effective, it will need to be taken regularly every day. Not taking ARVs regularly may cause the treatment to fail.

Many of the medicines used to treat HIV can interact with other medications prescribed by your GP or bought over-the-counter. These include herbal remedies such as St John’s Wort, as well as recreational drugs.

Always check with your HIV clinic staff or your GP before taking any other medicines.

Want to know more?

Pregnancy

ARV treatment is available to prevent a pregnant woman from passing HIV to her child.

Without treatment, there is a one in four chance your baby will become infected with HIV. With treatment, the risk is less than one in 100.

Advances in treatment mean there is no increased risk of passing the virus to your baby with a normal delivery. However, for some women, a caesarean section may still be recommended.

If you have HIV, do not breastfeed your baby because the virus can be transmitted through breast milk.

If you or your partner has HIV, speak to an HIV doctor as there are options for safely conceiving a child without putting either of you at risk of infection.

Missing a dose

HIV treatment only works if you take your pills regularly every day. Missing even a few doses will increase the risk of your treatment not working.

You will need to develop a daily routine to fit your treatment plan around your lifestyle.

Want to know more?

Side effects

HIV treatment can have side effects. If you get serious side effects (which is uncommon) you may need to try a different combination of ARVs.

Common side effects include:

  • nausea
  • diarrhoea
  • skin rashes
  • sleep difficulties

Want to know more?

People with HIV get treatment at a specialist HIV clinic which is usually part of a sexual health or infectious diseases clinic at your local hospital.

Services, including support organisations, may work together to provide specialist care and emotional support.

Find out more about living with HIV.

Preventing HIV

The main way to prevent HIV infection is to reduce the risk of exposure to HIV, for instance by having sex without a condom or sharing needles and other injecting equipment.

If you have HIV you can pass it on to others if you have sex without a condom, or share needles, syringes, or other injecting equipment. HIV treatment with ART substantially reduces the risk of passing the virus onto someone else.

Knowing your HIV status and that of your partner is important and if you are at regular risk of potential exposure to HIV you should have a regular HIV test.

Sex

HIV can be transmitted by having vaginal or anal sex without a condom. There is also a risk of transmission through oral sex, but this risk is much lower. 

HIV can also be caught from sharing sex toys with someone infected with HIV.

See causes of HIV for more on transmission of HIV.

The best way to prevent HIV and other sexually transmitted infections (STIs) is to use a condom for penetrative sex and a dental dam for oral sex.

Condoms

Condoms come in a variety of colours, textures, materials and flavours. Both male and female condoms are available.

A condom is the most effective form of protection against HIV and other STIs. It can be used for vaginal and anal sex, and for oral sex performed on men.

HIV can be passed on before ejaculation, through pre-come and vaginal secretions, and from the anus.

It is very important that condoms are put on before any sexual contact occurs between the penis, vagina, mouth or anus.

Lubricant

Lubricant, or lube, is often used to enhance sexual pleasure and safety, by adding moisture to either the vagina or anus during sex.

Lubricant can make sex safer by reducing the risk of vaginal or anal tears caused by dryness or friction, and it can also prevent a condom from tearing.

Only water-based lubricant (such as K-Y Jelly) rather than an oil-based lubricant (such as Vaseline or massage and baby oil) should be used with condoms.

Oil-based lubricants weaken the latex in condoms and can cause them to break or tear.

Dental dams

A dental dam is a small sheet of latex that works as a barrier between the mouth and the vagina or anus to reduce the risk of STIs during oral sex.

Find out more about what sexual activities can put you at risk of HIV and other STIs.

Sharing needles and injecting equipment

If you inject drugs, don’t share needles or syringes, or other injecting equipment such as spoons and swabs, as this could expose you to HIV and other viruses found in the blood, such as hepatitis C.

Many local authorities and pharmacies offer needle exchange programmes, where used needles can be exchanged for clean ones.

If you are a heroin user, consider enrolling in a methadone programme. Methadone can be taken as a liquid, so it reduces your risk of getting HIV.

A GP or drug counsellor should be able to advise you about both needle exchange programmes and methadone programmes.

If you are having a tattoo or piercing, it’s important that a clean, sterilised needle is always used.

Screening for HIV in pregnancy

All pregnant women are offered a blood test to check if they have HIV as part of routine antenatal screening. If untreated, HIV can be passed from a pregnant woman to her baby during pregnancy, birth or breastfeeding. Treatment in pregnancy greatly reduces the risk of passing on HIV to the baby.

Read more about screening for HIV during pregnancy.

Living with HIV

Psychological impact of HIV

Being diagnosed with HIV can be extremely distressing, and feelings of anxiety or depression are common. Your HIV clinic can provide you with counselling so that you can fully discuss your condition and your concerns.

You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your HIV clinic will have information about these.

Some people find it helpful to talk to other people who have HIV, either at a local support group or in an internet chatroom.

Want to know more?

Telling people about your HIV

Telling your partner and former partners

If you have HIV, it’s important that your current sexual partner or any sexual partners you’ve had since being exposed to infection are tested and treated.

Some people can feel angry, upset or embarrassed about discussing HIV with their current or former partners. Discuss your concerns with your GP or the clinic staff. They’ll be able to advise you about who should be contacted and the best way to contact them, or they may be able to contact them on your behalf. They’ll also advise you about disclosing your status to future partners and how you can reduce the risk of transmitting the virus to someone else.

Nobody can force you to tell any of your partners you have HIV, but it’s strongly recommended that you do. Left untested and untreated, HIV can have devastating consequences and will eventually lead to death.

Telling your boss

People with HIV are protected under the Equality Act (2010)

There’s no legal obligation to tell your employer that you have HIV, unless you have a frontline job in the armed forces or you work in a healthcare role where you perform invasive procedures (as you’ll need to be monitored by your occupational health team and HIV doctor to ensure you’re not putting your patients at risk of infection).

The Equality Act 2010 also places restrictions on the health questions that employers can ask during a job application process. Employers are allowed to ask health questions only after an offer of employment has been made, to help them decide whether you can carry out tasks that are essential for the job.

If you’re asked a question that you think isn’t allowed under the Equality Act 2010, you can tell the employer, or you can tell the Equality and Human Rights Commission. The GOV.UK website has more information about questions an employer can ask about health and disability.

If you’re an employee with HIV, you may worry that if you tell your employer, your HIV status will become public knowledge or you may be discriminated against. On the other hand, if your boss is supportive, telling them may make it easier for adjustments to be made to your workload or for you to have time off.

The HIV organisations below have lots of information and can advise you on these and other work-related issues.

Want to know more?

Pregnancy

If you have HIV and become pregnant, contact your HIV clinic. This is important because:

  • some anti-HIV medicines can harm babies, so your treatment plan will need to be reviewed
  • additional medicines may be needed to prevent your baby getting HIV

Without treatment, there’s a 1 in 4 chance that your baby will develop HIV. With treatment, the risk is less than 1 in 100.

Advances in treatment mean that a normal delivery is now recommended for women who have an undetectable viral count and whose HIV is well managed. For some women, a caesarean section may still be recommended, and may also be indicated for other reasons not related to your HIV.

Discuss the risks and benefits of each delivery method with the staff at your HIV clinic. The final decision about how your baby is delivered is yours and staff will respect that decision.

If you have HIV, don’t breastfeed your baby because the virus can be transmitted through breast milk.

If you or your partner has HIV, there may be options available that will allow you to conceive a child without putting either of you at risk of infection. You should ask your HIV doctor for advice.

Want to know more?

Opportunistic infections

If your CD4 count drops below 200, you’ll be at risk of developing many different types of infection. Infections that "take advantage" of an HIV-weakened immune system are known as opportunistic infections. However, if you stick to your HIV therapy, the likelihood of developing an opportunistic infection is low.

The four main types of opportunistic infections are:

People with advanced HIV also have a higher risk of developing some forms of cancer, such as lymphoma (cancer of the lymphatic system).

Pneumonia

Bacterial pneumonia is more common in people with HIV, but also occurs in people without HIV, particularly those with chronic respitory conditions. It can develop as a complication of other infections, such as flu. Left untreated, pneumonia can be fatal because the infection can spread through your blood.

Pneumonia can be treated with antibiotics. There’s also a vaccine that can protect you against many of the bacteria that can cause pneumonia. Annual flu vaccinations are also recommended for people living with HIV.

Tuberculosis (TB)

Tuberculosis (TB) is another bacterial lung infection. Globally, it’s one of the leading causes of death for people who are HIV positive. TB can be treated using antibiotics, but some strains of bacteria have developed antibiotic resistance, and these can be more difficult to treat.

Candidiasis (thrush)

Candidiasis is a fungal infection that’s common in people living with HIV. It causes a thick, white coating to appear on the inside of the mouth, tongue, throat or vagina.

Candidiasis is rarely serious but it can be both embarrassing and painful. It can be treated with antifungal creams.

Tell the staff at your HIV clinic if you have repeated bouts of candidiasis because it could be a sign of a low CD4 count.

Pneumocystis pneumonia (PCP)

Pneumocystis pneumonia (PCP) is a fungal infection of the lungs, which can be life-threatening if it isn’t treated promptly. Before the advances in anti-HIV medicines, PCP was the leading cause of death among those with HIV in the developed world.

Symptoms of PCP include:

Report any symptoms of PCP straight away because the condition can suddenly worsen without warning. PCP can be treated with antibiotics and, if your CD4 count drops below 200, you may be given antibiotics to prevent a PCP infection.

Cancer

People with advanced HIV have an increased risk of developing some types of cancer. It’s estimated that someone with untreated late-stage HIV infection (AIDS) is 100 times more likely to develop certain cancers compared to someone without the condition.

The two most common cancers to affect people with HIV are lymphoma and Kaposi’s sarcoma. Lymphoma is a cancer of the lymphatic system (a network of glands that makes up part of our immune system). Kaposi’s sarcoma can cause lesions to grow on your skin, and can also affect your internal organs.

HIV treatment is important in reducing your risk of cancer and long-term conditions, such as cardiovascular and respiratory disease. If you smoke, giving up is also important in reducing this risk.  

Money and financial support

If you have to stop work or work part time because of HIV, you may find it difficult to cope financially. However, you may be entitled to one or more of the following types of financial support:

Want to know more?

‘Many HIV-positive women assume they’ll pass on HIV to their baby, but that’s not the case these days’

Sarah has HIV. She describes her pregnancy and the steps she had to take to ensure she’d have a healthy baby.

An expert explains what HIV is and how to avoid passing it on to your unborn child.

More real stories from HIVaware

‘If it wasn’t for HIV, I wouldn’t be where I am today.’

‘Having HIV is not the end of the world’

Mick Mason, who has haemophilia, caught HIV and hepatitis in the early 1980s from contaminated blood products. 

“I discovered I had HIV by chance in 1985 when I was sent a double-sided diet sheet by the hospital. On one side it said, ‘This is what to eat if you are HIV positive’ and on the other, ‘This is what to eat if you have AIDS’. They just assumed that somebody had told me that I had HIV.

“I phoned the haematology unit, who refused to talk about it over the phone. In the end, I had a two-minute appointment with the consultant, who said: “You have got hepatitis B and HIV. Go away and enjoy yourself but don’t have sex.” I was just 18 and it didn’t seem real. 

“In 1985, HIV was a death sentence. There was no support or counselling. You were left to get on with it. My way of coping was to try to forget about it. I would go to work then out to the pub and stay there until I was chucked out. I didn’t imagine I would ever meet anyone, let alone get married.

“I never really thought about death or dying. I suppose I just stuck my head in the sand. I told my mother, who thought it was the end of the world, and a few close relatives, but I didn’t tell any of my friends for three or four years.

“I met my wife, Caroline, in 1989. I didn’t tell her I had HIV at first as I was afraid she would reject me. I didn’t know that my cousin, whom I met Caroline through, had already told her. At first we were just friends, but one night as we were becoming closer she asked me about it.

“I was so afraid she would push me away that I tried to deny it, but eventually I told her that I had HIV and she may as well leave now. But she didn’t and we talked and cried about it until about 4am. She didn’t seem that shocked, but was very upset and felt the injustice of it all. I think she had already read up on HIV before she confronted me so had some knowledge.

“We’ve always had protected sex but my HIV status has never stopped us doing anything. It’s important to always protect yourself and the other person. We are all responsible for our own sexual health and if you have HIV, it is your responsibility to always use a condom.

“We got married in August 1990. Caroline told her parents about my HIV as I chickened out of the task. They were shocked and devastated but were fully supportive of our relationship. At first we lived from birthday to birthday and Christmas to Christmas. I would go to the hospital every two or three months and they would say, ‘You’ve got another two or three years’, until around the mid-90s.

“But there was to be another blow. In 1994, I was sent a letter telling me that I had tested positive for hepatitis C. Understandably, I felt very angry but not really that surprised. I suspect they knew I had hep C back in the early 80s. I had treatment for it but, unfortunately, it failed. I approached the treatment thinking that it wouldn’t work. That way, I wouldn’t be too disappointed when it didn’t. So I really wasn’t too bothered.

“I decided to start treatment for my HIV in 1996 because we wanted to try for a baby. I think I may be one of the lucky ones. I never had any major side effects. I had some internal bleeding with one of the drugs but they changed them and I was fine. Well, I say fine, but I just had what I would call the normal side effects that most people get: nausea, joint pain, lethargy, dodgy bowel movements. We’ve had several tries at fertility treatment but without success and have now decided to give up.

“I have had a few life-threatening moments. They make you see things in a different light. Some of these have been caused by my haemophilia, which was a shock as I had spent so many years worrying and concentrating on my HIV status that I had forgotten my haemophilia could kill me. 

“Having HIV was occasionally debilitating, physically and mentally. At one point, I had a problem with the muscles in my arms, which was put down to the HIV. I couldn’t raise my arms above my head. I couldn’t hold anything tight including cups, or even peel a potato. I have had three bouts of intussusception, which again, I was told, was down to the HIV. But it’s not a death sentence any more. As a haemophiliac, I tend to be seen as a victim, unlike people who have contracted HIV sexually, who tend to be blamed. But the truth is, it is no one’s fault – no one set out to give me HIV.

“Having HIV is not the end of the world, although I do have dark moments, especially if things go wrong. It does affect my life. I can’t get life insurance, although I have been able to get a mortgage. There is also the issue of who to tell. Due to the stigma that comes with HIV, you have to be careful who you tell. But to be honest, who really needs to know? If you were asthmatic, you wouldn’t tell everyone, so why would you if you had HIV? In the past I didn’t tell employers, although these days I am open about it.

“We used to foster teenagers and the team knew about my HIV status. When deciding whether to tell people, think about who needs to know. Obviously your partner and your children and maybe a close friend or two, but people who are not close don’t need to know. You are not putting them at risk.

“The more people who are open about HIV, the less stigma there will be. I went public with my condition in 2000 and am at the point now where I really don’t care who knows about my status. I often do radio, television and newspaper interviews. I feel that unless you are open about your status, nothing will really change. If you hide your HIV status in a dark corner, that’s where you’ll feel you are.”

‘Things have moved on a lot since I was diagnosed with HIV’

Michael Edwards contracted HIV in 1990. He’s now in his 60s and is still working and leading a healthy life. 

“The first sign was a bad dose of flu. Like me, my GP is gay and he suspected that I had contracted HIV. I flew down to St Mary’s Hospital and had a test, which was positive. Unusually, I contracted HIV through oral sex, probably because I had bleeding gums.

“I work at the London Lighthouse, an HIV and AIDS charity, and I think because of that I didn’t have the same pressures that many people do. The main issue for me was telling my family. My father had died by the time I was diagnosed. I told my sister, but I was worried about telling my mum. Shortly afterwards, however, she got ill and died so she never had to know.

“At that time, before effective medication, people were dying all the time and I didn’t have much time to think about my own situation. I started on medication in the late 90s. It took me a year to decide to go on it but I have had no regrets. My CD4 cell count immediately went down and my viral load became undetectable, which meant no virus could be detected in my blood. I was lucky in that I didn’t have any major side effects. The only thing I noticed was that if I didn’t have breakfast, I felt sick.

“I am now on my second lot of treatment, having had a treatment break of a year, and I am finding adherence more difficult. The main problem is nausea, but I find the more I eat, the better I respond.

“Coping with HIV is very much a matter of attitude. There is still a stigma attached to it, maybe not as much in the 1980s, but it is still there. When I do talks, I always say, ‘It’s not just a question of sleeping around. It’s like getting pregnant: if you have sex, the risk is there.’ We have rotten sex education in this country. We need to get better and make sure that kids are informed. Parents need to realise that their children are having sex and to make sure that they are doing it safely and have the information to protect themselves.

“As far as telling sexual partners is concerned, I find it better to tell them I have HIV straight away rather than get a couple of months down the line and have them find out. Some people do reject you and that can be hard, but I still believe it is better to be open. Some people find it easier with internet dating services to put their HIV status on their profile so they don’t have to do it face to face. Different things work for different people. As for me, I don’t care who knows.

“Things have moved on a lot since I was diagnosed. These days in the West, although not in Africa, people are living with HIV rather than dying from it. In the old days, the main challenge was deciding who to tell. It was difficult, especially as some of my friends didn’t want to know when they discovered. As the problem got more widespread and more people had HIV, however, many of those who wouldn’t give me the time of day when I was first diagnosed changed their attitude.

“There is still is a certain amount of prejudice within the gay community. Things are getting better, but they haven’t changed completely and they won’t until people change their attitudes and condom wearing becomes second nature.

“With the advent of medication, a lot of complacency exists. Some people have the attitude that you just take a pill and you are OK. It isn’t quite like that. We have to get across the seriousness of HIV and make people realise that it is not just a problem that affects gay men. It’s everybody’s problem.”