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Worldwide 38.4 million people were living with HIV at the end of 2021 with 1.5 million people becoming newly infected with HIV in 2021 globally. The World Health Organization (WHO) African Region is the most affected region, with 25.6 million people living with HIV in 2021, and the region accounts for almost 60% of the global new HIV infections.
Between 2000 and 2021, new HIV infections fell by 49%, and HIV-related deaths fell by 61%, with some 18.6 million lives saved by antiretroviral therapy (ART). Although in 2021, 650,000 people did die of HIV-related causes globally.
In 2019, it was estimated that there were 105,200 people living with HIV in the UK; 94% of these people are diagnosed, and therefore know that they have HIV. This means that around 1 in 16 people living with HIV in the UK do not know that they have the virus.
98% of people diagnosed with HIV in the UK are on treatment, and 97% of those on treatment are virally suppressed which means they can’t pass the virus on. Of all the people living with HIV in the UK, 89% are virally suppressed.
Of the 98,552 people accessing HIV care in the UK in 2018, 68,088 were male and 30,388 were female, so just over two-thirds of the people accessing HIV care in the UK in 2018 were male.
Over half of the people receiving HIV specialist care in the UK in 2019 were white (53,621; 54.6%), and just over a quarter were Black African (28,525; 28.7%). 5,581 (5.7%) of people receiving HIV care were of other or mixed ethnicity, 3,902 (4%) were Asian, 2,780 (2.8%) were Black Caribbean and 2,153 (2.2%) were Black other.
More than two in five people accessing HIV care in 2019 were aged 50 or over (41,855; 42.4%). For the first time since 2010 the number of people living with HIV aged 50 and over matches that of the 35–49 years age group (41,832; 42.4%). This shows how effective treatment is helping people to live longer with HIV.
The vast majority (90,121; 91.5%) of people receiving HIV care in the UK in 2019 did so in England. In Wales 2,358 (2.4%) people received HIV care in 2019, in Scotland it was 4,945 (5%) and 1,122 people (1.1%) in Northern Ireland. Within England, 37,709 (41.8%) people who receive HIV care access it in London. (Source National Aids Trust)
What is HIV?
HIV (Human Immunodeficiency Virus) is a virus which attacks the immune system, specifically the white blood cells called CD4 cells or helper T cells. HIV destroys these CD4 cells, weakening a person’s immunity, the body’s defence against diseases. Because HIV works backwards to insert its instructions into your DNA, it is called a retrovirus. All viruses invade your cells and then use your cells’ machinery to make more copies of themselves. HIV not only uses your cells to make more of itself, but it also inserts its instructions into your DNA. Your cell then acts as though the virus’ instructions are its own.
If left untreated, infection with HIV progresses through a series of stages from a flu-like seroconversion illness (this is a sign that the immune system is reacting to the presence of the virus in the body), to infections associated with the symptomatic stage, leading to late-stage HIV or AIDS. HIV stays in the body for life, but treatment can keep the virus under control and the immune system healthy. You can’t get AIDS if you haven’t been infected with HIV.
HIV has been passed on between humans for many decades but was only identified in the early 1980s. In the early 1980s, reports of a strange new disease began emerging from the United States and was called Gay-Related Immune Deficiency (GRID). This news was picked up in the British gay press, and Gay News ran a story in November 1981 under the headline “Gay cancer or mass media scare?”, but relatively few people noticed.
As the number of diagnoses in the United Kingdom started to rise sharply, the deaths began. Many people died very soon after diagnosis, as an array of opportunistic infections took advantage of their weakened immune systems. Terrence Higgins died at St Thomas’ Hospital, London, in July 1982, one of the first deaths in the UK attributed to an AIDS-related illness, and due to the bravery of his partner he was the first person to be named as having died from an AIDS-related illness in the UK. That same year, GRID was renamed Acquired Immune Deficiency Syndrome (AIDS) after the same immune deficiency syndrome was found in Haitians and heterosexual women.
In 1985 an HIV test was developed and blood donation centres started screening for HIV. The UK Department of Health published its first advice on HIV AIDS to medical practitioners and the Health Education Council produced its first literature on HIV AIDS.
Is there a difference between HIV and AIDS?
In the 1980s and early 1990s, most people with HIV were eventually diagnosed with AIDS. AIDS (Acquired Immune Deficiency Syndrome) is the most advanced stage of an HIV infection when the immune system can no longer fight infections. Someone with AIDS has both HIV and at least one of a specific list of AIDS-defining diseases, which include tuberculosis (TB), pneumonia and some types of cancer.
AIDS is life-threatening, but if HIV is caught early and is treated, it will not lead to AIDS. If HIV is caught late, it can lead to more complications and could ultimately lead to AIDS. That is why it is so important to get tested early if you have been at risk of HIV, as it will mean that you can access treatment that will prevent you from ever getting AIDS.
What causes HIV?
HIV is a sexually transmitted infection (STI) and is caused by a virus. It can also be spread:
- By contact with infected blood and from illicit injection drug use or sharing needles.
- From mother to child during pregnancy, childbirth or breastfeeding.
Anyone can get HIV if they are exposed to the virus. In the UK, most cases of HIV are caused by having unprotected vaginal, anal or oral sex with a person who has HIV. A person with HIV can pass the virus on to others even if they do not have any symptoms and people with HIV can pass the virus on more easily in the weeks following infection.
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.
The body fluids that contain enough HIV to infect someone are:
- Vaginal fluids, including menstrual blood.
- Breast milk.
- Lining inside the anus.
Other body fluids, such as saliva, sweat or urine, do not contain enough of the HIV virus to infect another person. HIV is not passed on by spitting, sneezing or coughing, nor by kissing or general social contact. HIV can’t survive for very long once it is outside the human body.
If someone with HIV has a detectable viral load, they can pass on HIV. Studies have shown that a person who is on effective treatment and who has an undetectable viral load can’t pass on HIV.
In a medical setting, it is possible for HIV to be transmitted by someone accidentally cutting themselves with a blade or needle they have used to treat a person living with HIV. This is called a needlestick or sharps injury.
What are the signs and symptoms of HIV?
Sometimes you will have flu-like symptoms within 2 to 4 weeks after the virus enters the body and you first get infected with HIV. This illness is known as primary (acute) HIV infection.
These symptoms may last for a few weeks and can include:
- Mouth sores.
- Muscle aches and joint pain.
- Night sweats.
- Sore throat.
- Swollen lymph nodes mainly on the neck.
- Weight loss.
These symptoms can be so mild that you might not even notice them. However, the amount of virus in your bloodstream (viral load) is quite high at this time. The higher the viral load the more infectious someone is and, as a result, the infection spreads more easily during primary infection than during the next stage.
What are the stages of HIV?
Left untreated, the HIV infection goes through the following stages:
- Seroconversion illness – Some people experience a short illness soon after they contract HIV. This is known as seroconversion illness or primary or acute HIV infection. In some people, seroconversion illness is so mild that it passes without being noticed. Some people mistake it for the flu, but for others it is more severe and they may need to see a doctor. Seroconversion is the period when someone with HIV is at their most infectious.
- The asymptomatic stage of HIV – Once seroconversion is over, most people feel fine and don’t experience any symptoms. This is often called the asymptomatic stage and it can last for several years. Though a person might feel well at this stage, the virus is active, infecting new cells, making copies of itself and damaging your immune system’s ability to fight illness.
- Symptomatic HIV – The longer someone lives with HIV without treatment, the greater their risk of developing infections that their weakened immune system can’t fight, for example certain cancers, as well as the direct effects of HIV. As the virus continues to multiply and destroy a person’s immune cells – the cells in their body that help fight off germs – they may develop mild infections or chronic signs and symptoms such as:
– Oral yeast infection (thrush)
– Shingles (herpes zoster)
– Swollen lymph nodes (this is often one of the first signs of HIV infection)
– Weight loss.
- Late-stage HIV – If HIV has a chance to cause a lot of damage to a person’s immune system, the person may have a CD4 (T cell) count of less than 200 cells/mm3, they may become ill from certain serious opportunistic infections and cancers, and are more likely to develop diseases that wouldn’t usually cause illness in a person with a healthy immune system. These illnesses are also known as AIDS-defining and include cancer, tuberculosis (TB) and pneumonia. Getting ill in one of these ways means that the person now has symptomatic HIV.
The signs and symptoms of some of these infections may include:
– Chronic diarrhoea
– Persistent white spots or unusual lesions on your tongue or in your mouth
– Persistent, unexplained fatigue
– Recurring fever
– Skin rashes or bumps
– Swollen lymph glands
– Weight loss.
Once a person is diagnosed with AIDS, they can have a high viral load and are able to transmit HIV to others very easily. If HIV is diagnosed promptly and the person goes on to treatment straightaway, most people living with HIV never experience late-stage HIV nor develop AIDS. Without treatment, people with AIDS typically survive about three years.
How is HIV diagnosed?
It is very difficult to diagnose HIV from symptoms alone and some people living with HIV have no signs and symptoms for many years. Taking an HIV test is the only way to find out if you have HIV.
HIV testing is available free of charge through the NHS and Health and Social Care services. You may be offered a test if you see your GP, are admitted to hospital or go to an outpatient clinic with a condition that could be related to HIV.
The period of time between becoming infected with HIV and the infection being detectable by a test is called the “window period”. If a test is performed during this window period, it is unlikely to detect HIV and a person who has recently become infected with HIV may receive a “false negative” test result. Different tests have different window periods. It can take up to three months after infection for some HIV tests to be able to detect HIV.
The most common form of HIV test is a blood test, in which a small amount of blood is taken and tested in a clinical setting such as in a laboratory. The test result is usually available within a few days, sometimes on the same day. If the test finds no signs of infection, then your test result is “negative”. If the HIV virus has been found, then the test result is “positive”.
It is also possible to screen for HIV using a rapid point of care test kit which tests 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. However, it can take up to several weeks 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 is best to have the full blood test for HIV.
It is now possible to buy HIV self-testing kits that allow you to test yourself and see the result immediately, without the involvement of a health professional. It is important to check that any HIV self-test kit you buy carries the European CE quality mark for use as a HIV self-test. Self-testing for HIV may not be the most suitable option for some people as it is different from consulting a healthcare worker who can advise you about testing, provide additional support and help you access laboratory tests of the highest quality.
Being diagnosed with HIV
Whatever your HIV test result might be, there are many good reasons to test and few reasons to avoid testing. The earlier HIV is diagnosed, the more likely it is that treatment will be successful. This means you are more likely to have a healthy life and have fewer problems with symptoms of the infection. It will also help to protect your sexual partners.
You will generally be told your test results in person. The doctor, nurse or health adviser will do another HIV test to confirm the result, assess your current health and refer you to specialist HIV services. You will be given written information about HIV and your diagnosis, and you can always ask questions of your medical team.
If you have just been diagnosed with HIV you might be feeling upset, shocked or angry. You might be having trouble taking in the things you have been told. Whatever you are feeling, you do not have to go through it alone, and there is support available to help you cope better with the news and to plan for the future, such as:
- Terrence Higgins Trust helpline, THT Direct – 0808 802 1221. Call them for support, advice and information.
- METRO Charity helpline on 020 8305 5006. Lines are open from 10am to 6pm Monday to Friday.
- National AIDS Trust.
- NAM email firstname.lastname@example.org or leave a message at 020 3727 0123.
- CHIVA provides direct HIV support in several regions of the UK, telephone 0117 905 5149.
When someone is diagnosed with HIV, medical staff might encourage people to share their HIV status so they can get support from their family, friends, partners and employers, but they will not force them to do so. Whether you tell your friends and family members about your HIV diagnosis will depend on your relationship with them, although confiding in someone close can be an invaluable source of support.
Telling your employer or prospective employer about your HIV diagnosis may or may not be a beneficial thing to do. Sharing your status may not be a good idea if you think your confidentiality might be breached or that you might experience stigma or discrimination. However, informing them of your HIV status can allow your employer to make reasonable adjustments, such as reducing your workload or allowing you extra time off work for medical appointments, and you may also be able to access extra support at work. If you tell your employer your status, you are protected under the Equality Act 2010. The Data Protection Act 2018 and UKGDPR also states that records of your HIV status must be kept confidential.
If you are a parent of a child with HIV, or if you are a student with HIV yourself, you may be considering whether or not to tell a teacher or lecturer at your school, college or university. A child or young person who is living with or is affected by HIV has the same rights as any child to attend school and access education. They are also protected by the Equality Act 2010, which means it is unlawful to discriminate against them. As HIV is not a notifiable illness, you are not obliged to tell the school or college that you or your child or a family member has HIV. It can be useful to tell the school if your child has to have frequent time off for medical appointments and it can also be a good way to ensure that your child has some extra support if they need it. Very young children may need a teacher to monitor their anti-HIV medication. The Data Protection Act 2018 and UKGDPR states that records of your child’s HIV status must be kept confidential.
How to know if you have HIV
Most people with HIV, around 95%, know their status because they have been diagnosed. But it is thought that around 5% of people with HIV have not been diagnosed, which is about 5,150 people.
If you have been exposed to any of the risk factors of HIV such as:
- Engaging in unprotected sexual activities.
- Sharing contaminated needles, syringes and other injecting equipment and drug solutions when injecting drugs.
- Receiving unsafe injections, blood transfusions and tissue transplantation, and medical procedures that involve unsterile cutting or piercing.
- Experiencing accidental needlestick/sharps injuries, including among health workers.
…there may be a risk that you might have contracted HIV. You may not have any symptoms if you are infected by HIV and you can’t tell if someone has HIV just by looking at them. The only way to know if you have HIV is to take an HIV test. Find a free HIV testing centre convenient to you (UK only).
How is HIV treated?
Almost all of the people (99%) who have been diagnosed with HIV in the UK are receiving treatment. Around 97% of people who are receiving treatment have an undetectable viral load. Having an undetectable viral load means that the virus can’t replicate. This is important because it allows the immune system to get stronger and fight off infections. It also means there is not enough HIV in the body fluids to pass on HIV to somebody else during sex; this is often referred to as “undetectable equals untransmutable” or “U = U”.
There have been significant improvements in HIV treatment and care since the beginning of the HIV epidemic in the 1980s. People living with HIV who have access to effective HIV treatment and good healthcare can live long healthy lives. In the UK, national guidelines set out standards for HIV treatment. They currently recommend that anyone with HIV who is ready to commit to treatment should start it regardless of their CD4 (T cell) count; that is, a measure of the health of your system.
HIV is treated with antiretroviral therapy (ART) consisting of one or more medicines. Treatment with anti-HIV drugs is sometimes called combination therapy because people usually take three different drugs at the same time, often combined into one tablet. There are over 25 anti-HIV drugs now available, divided into six classes of drugs. Each class works against HIV in a particular way. The vast majority of people with HIV are put on a fixed-dose combination pill.
ART does not cure HIV, but it reduces its replication in the blood so it reduces the viral load to an undetectable level. ART should be taken every day throughout the person’s life. People can continue with safe and effective ART if they adhere to their treatment. In cases when ART becomes ineffective, that is HIV drug resistance, people will need to talk to their doctor in order to switch to other medicines to protect their health.
ART enables people living with HIV to lead healthy, productive lives. It also works as an effective prevention, reducing the risk of onward transmission by 96%. There are, however, some side effects from HIV treatment, but these are not inevitable, and if they do occur, they are normally mild, easy to treat and usually go away quickly.
Common side effects include:
- Nausea or vomiting.
Protease inhibitors, ART medications that help slow the progression of HIV, can increase the levels of fats in your blood, which can contribute to high blood pressure or hypertension.
A change of treatment is one of the options for dealing with potential side effects, but it is important that you never stop taking your treatment without consulting a doctor first.
With HIV, you may have a co-infection such as hepatitis B or C or tuberculosis or another illness such as cardiovascular disease, HIV-related cancer, chronic kidney disease or HIV-associated neurocognitive impairment. In these situations, your doctor may need to tailor your ART or treat your other condition before starting your HIV treatment. This will be explained to you by the doctors looking after you.
Can HIV be prevented?
One of the best ways of preventing HIV is to avoid unprotected sex. Using a condom correctly prevents contact with semen or vaginal secretions, or blood, stopping HIV from being passed on. The virus cannot pass through the latex of the condom. Condoms should only be used with a water-based lubricant as oil-based lube weakens them.
Although people with HIV who are on effective treatment and have an undetectable viral load cannot pass on HIV through any of their body fluids, it is important to remember that if someone has sex without a condom, other sexually transmitted infections (STIs) can be passed on. Sex without a condom can also result in pregnancy if other contraception is not being used.
Misusing alcohol or drugs can impair your decision-making and this can lead you to engage in certain behaviours that may increase your chances of contracting or transmitting HIV, including having sex without a barrier method. Avoid situations where you may misuse drugs and alcohol and where you may find yourself with a higher chance of making poor choices about sexual encounters.
If your partner is living with HIV, to prevent the possibility of them passing the virus to you, you can take PrEP. This is a drug taken by HIV-negative people before and after sex that reduces the risk of getting HIV. Taking PrEP before being exposed to HIV means there is enough drug inside you to block HIV if it gets into your body. The medication used for PrEP is a tablet which contains tenofovir and emtricitabine (drugs commonly used to treat HIV). It is sometimes called Truvada, but most of the PrEP used in the UK is generic PrEP. PrEP is now available free on the NHS in England from sexual health clinics. If you are thinking about getting PrEP from outside the NHS, it is important that you talk to an adviser from a sexual health clinic, as they will support you to use the treatment safely and provide necessary tests.
Sharing needles with other people or using unsterilised needles to take illegal or IV drugs can increase your chance of contracting HIV and other conditions like hepatitis. Never share needles with another person, as you can contract HIV even doing this just one time.
If you are working in an environment where you may have to clean up blood that has been spilt, wear rubber gloves and mop up the liquid using bleach and warm water (one-part bleach to 10 parts water). Use warm, soapy water to clean away blood spilt on someone’s body. HIV does not usually survive long outside of the body, but contact with blood, especially on broken skin, should be avoided. Put the waste, used gloves and bloodied clothes in a plastic bag, seal and throw away.
To prevent mother-to-child HIV transmission, a mother may be offered a caesarean birth if her viral load is detectable, and she may be advised to not breastfeed. These medical interventions reduce the risk of mother-to-baby transmission to below 1%.
In the past 10 years almost 2,500 UK-born people diagnosed with HIV in the UK acquired the virus while they were abroad. Many countries have much higher HIV rates than the UK, including countries in Sub-Saharan Africa, some parts of the Caribbean, Eastern Europe and South East Asia. There are also additional risks in other countries. In developing countries, for example, 5%–10% of HIV infections occur because of HIV-infected donated blood.
It is important to be especially careful of HIV when travelling abroad. You should take the same precautions everywhere as you would at home, including using condoms for sex and not sharing needles or drug equipment.
When travelling abroad, if you are taken ill and require inoculation, surgery or a blood transfusion you should also:
- Weigh up the risk of having a blood transfusion in a developing country against the risk of further illness or death if the transfusion doesn’t go ahead.
- Insist on seeing a needle opened fresh from the packet if you need an injection.
- Take out comprehensive travel insurance before you leave.
You can get regular tests for HIV and STIs to stay on top of your health as well as to reduce transmitting these conditions to others. Getting tested along with a new sexual partner(s) can ensure that you are not transmitting HIV and STIs to each other when you begin your sexual relationship.
Some people have gone to prison because they have passed HIV on to another person. They were convicted of “recklessly transmitting HIV”. In England and Wales, a person can be found guilty of recklessly transmitting HIV if they know that they have HIV, they understand how HIV is transmitted, the person they have sex with does not know they have HIV, they have sex without a condom and they definitely pass HIV on to the person they had sex with.
Living with HIV
Many people with HIV have lives that are not so different from those of people without the virus. Most people with HIV can live long and healthy lives if they get and stay on treatment. As well as taking medication, a person with HIV needs to attend regular medical check-ups.
Maintaining a balanced lifestyle and seeking treatment for any other medical issues can help a person with the condition stay healthy.
Staying healthy is key to living well with HIV, including:
- Reduces your risk of developing cardiovascular disease, high blood pressure, type 2 diabetes, and several types of cancer; these are all health conditions that can affect people living with HIV.
- Causes chemical changes in your brain which can help to positively change your mood.
- Reduces your stress.
- Improves your sleep.
- Helps your body to rest and recover from everything that has happened during the day.
- Helps your blood pressure to drop, your heart rate gets slower, your muscles relax and your breathing gets deeper.
- Can positively affect your emotional wellbeing.
- Plenty of fruits, vegetables and whole grains.
- Lean sources of protein, such as fish, poultry and legumes.
- Healthy fats such as nuts, olive oil and avocados.
- Few highly processed foods.
- Smoking increases the risk of lung cancer, some other cancers, and lung problems. According to research, this risk is higher among people with HIV.
Limiting alcohol intake
- Some evidence shows that people living with HIV who regularly drink above recommended alcohol levels have poor HIV viral suppression. This may be because they do not adhere to their antiretroviral medication regime as prescribed.
Avoiding recreational drug use
- Recreational drugs may interfere with prescription medications and can make a person less likely to follow their treatment plan.
Looking after your mental wellbeing
- Connect with other people.
- Join a support group for people living with HIV.
- Learn new skills to boost self-confidence and raise self-esteem.
- Helping others will give you a feeling of purpose and self-worth, create positive feelings and a sense of reward.
Living with HIV can increase the likelihood of having stress, anxiety and depression. In addition, some opportunistic infections can affect the nervous system, resulting in changes in behaviour and thinking.
Some ways of managing stress and mood disorders include:
- Alternative therapies, such as acupuncture, massage and aromatherapy.
- Art or music therapies.
- Deep breathing techniques.
- Exercise, including yoga.
- Relaxation activities, mindfulness and meditation.
People living with HIV must be aware of food safety. The symptoms of foodborne illnesses, sometimes collectively called “food poisoning”, can be more severe in people with HIV. A person may need to spend time in the hospital, and in some cases, a foodborne illness can become life-threatening.
To prevent foodborne illness, people can:
- Practise good food hygiene when preparing, storing and eating meals.
- Avoid raw or undercooked meat, seafood and eggs.
- Avoid unpasteurised dairy products.
- Avoid drinking untreated water.
Living with HIV does not prevent a person from having children, becoming pregnant and delivering a healthy baby; however, it is important to take precautions to avoid passing on the virus to the baby.
These measures include:
- Staying in close contact with the doctor or midwife.
- Taking HIV treatments exactly as prescribed.
- In most cases, having a caesarean delivery.
- A doctor giving special medication to the infant.
- Not breastfeeding the baby.
In the UK currently 39,000 people, around 39%, of the total accessing HIV services are aged 50 or older. People ageing with HIV share many of the same health concerns as the general population aged 50 and older, and these might include:
- Multiple chronic diseases or conditions.
- The use of multiple medications.
- Changes in physical and cognitive abilities.
- Increased vulnerability to stressors.
- Frailty and falls.
Age UK provides information and support for some conditions and illnesses that people are more likely to develop as they get older.
People with HIV today are living long, healthy lives thanks to modern treatment options. However, World AIDS Day in December has the aim of transforming the future for everyone by ending new cases of HIV by 2030. For more information about how you can support this visit World AIDS Day 2022.