Stigma can be encountered in all areas of daily life: at home, in the community, in healthcare settings like your clinic, GP and dentists, at work and in the media. Much of this stigma has its roots in ignorance and fear, so it makes good sense to learn some basic facts about HIV so you have the knowledge to resist this stigma.

How HIV is transmitted

HIV can be passed on through anal, vaginal, or, more rarely, oral sex. Using a condom properly can prevent the sexual transmission of HIV. Taking anti-HIV treatment does not cure HIV and even if you have an undetectable viral load in your blood, you may still have enough HIV in your genital fluids to infect somebody else.

You cannot transmit HIV by kissing, hugging, holding hands, or mutual masturbation. You can find out more about the sexual transmission of HIV in the NAM booklet, HIV and sex.

HIV can also be passed on from a pregnant mother to her baby. This can happen when the baby is developing the womb, during childbirth, or through breastfeeding. But the risks of mother-to-child transmission of HIV can be reduced to less than 1% by the appropriate use of anti-HIV drugs during pregnancy and childbirth, having a caesarean delivery, and by not breastfeeding. A mother cannot pass on HIV to her baby by kissing it, hugging it, bathing or changing it. There’s a lot more information on preventing mother-to-child transmission of HIV in the NAM booklets HIV and women and HIV and children.

HIV can also be passed on when injecting drug users share needles, syringes and other injecting equipment.

There have been cases of HIV being passed on to healthcare workers during medical procedures. But all medical staff receive advice and training in “universal infection control procedures”. This means they should routinely take steps to protect themselves and others from the risk of blood-borne infections such as HIV. There is no need for any special preventative measures to be taken by doctors, nurses or dentists when they know that a patient has HIV.

HIV cannot be passed on in the air, nor can you be infected with it by shaking hands, sharing glasses, cups or plates, or from bed linen, clothes or toilet seats.

The number of people with HIV in the UK

So far, approximately 70,000 cases of HIV have been recorded in the UK. About 20,000 people have died because of HIV, most before effective anti-HIV treatment became available. Anonymous blood tests at sexual health clinics suggest that about a third of all people with HIV in the UK don’t know that they have the infection.

The two main groups affected by HIV in the UK are gay men and African migrants, with each group now contributing about 40% of all infections. About 10% of HIV cases are due to injecting drug use, and a small number involve people who received blood or blood products contaminated with HIV before effective screening was introduced in the mid-1980s.

A small, but growing, number of infections involve heterosexuals who acquired HIV from other heterosexuals in this country.

Although gay men and African people are the groups most affected by HIV, only small proportions of each group are HIV-positive. For example, although London has the highest concentration of HIV-positive gay men in the UK, fewer than one-in-eight gay men in the capital have the infection.

There has been an increase in the number of new infections and total HIV diagnoses in recent years. The language used by some commentators has implied that people who have been infected with HIV only have themselves to blame, as they have suggested that the apparent increase in infections is due to “complacency” about HIV or to the safer sex message “not getting through”, particularly to gay men.

But increased numbers of new infections amongst gay men are due in part to increased levels of testing.

Large increases have also been seen in the number of HIV infections among African people, although figures from the last couple of years would suggest that this has levelled off. Some politicians and parts of the media have suggested that African “health tourists” and asylum seekers are coming to the UK with the aim of getting free HIV treatment that would be unavailable to them at home. But there’s good evidence that the vast majority of HIV-positive Africans in the UK did not know that they had HIV when they arrived in the UK. That many African people do not know that they have HIV on their arrival in the UK is also suggested by figures showing that Africans are the group most likely to have their HIV diagnosed late.

The life-expectancy of people with HIV

Many people think that HIV is a “death sentence” and it is true that before potent combinations of anti-HIV drugs became available in the late 1990s, most people with HIV became very ill and died within ten to 13 years of infection.

But over the last decade there has been a radical transformation in the treatment of HIV. Many doctors are now hopeful that effective HIV treatment will enable most people with HIV to live a more or less normal lifespan. But anti-HIV drugs have to be taken very rigorously to work properly and they can cause side-effects, some of which may result in longer-term health problems. You can read a lot more about HIV treatments and how to take them properly in the NAM booklets Anti-HIV drugs, HIV therapy and Adherence.

Access to HIV treatment and care

All HIV treatment and care provided by the NHS is free to people who are entitled to use the NHS for free.

HIV tests are free for people who are not entitled to NHS care, as are associated counselling and emergency treatment. All treatment for sexually transmitted infections, and tuberculosis (TB) is also free, but not on-going treatment and care for HIV.

Many people believe that denying NHS care to HIV-positive people who are not entitled to free NHS care, such as failed asylum seekers, makes no economic or public health sense. They argue that because HIV is not treated with antiretroviral drugs in these individuals, they are more likely to become very ill with HIV and require emergency care in hospital, which is more expensive in the long run. Not only that, but people with untreated HIV are likely to have higher HIV viral loads and therefore be more infectious to others.

Research has shown that not providing treatment to some people because of their immigration status can have a knock-on effect for migrants who do have the right to use the NHS for free. Some people have reported being fearful that they will be asked about their asylum status or have their right to treatment suddenly interrupted or withdrawn. If you are having your right to free NHS care questioned contact one of these HIV organisations for advice:

• THT Direct: 0845 1221 200
• African HIV Policy Network: 020 7017 8910
• African AIDS Helpline: 0800 0967 500

Finding out you have HIV isn’t the end of the world

Your life will change after an HIV diagnosis. But, despite what some newspapers would have you believe, it’s not “a fate worse than death” or the “end of the world”. That’s not to minimise the consequences of having HIV. At the very least, being HIV-positive makes life more complicated in many areas, and many people find that life becomes harder to cope with following their diagnosis. And it’s also sadly true that people do still die because of HIV, often because their infection was diagnosed so late that it couldn’t be effectively treated.

The exact experience of life with HIV differs from person to person, but it’s worth pointing out that many people find that there are very few things they’re prevented from doing because of HIV.

There are some exceptions. For example, occupational health rules mean that HIV-positive healthcare workers are prevented from carrying out some medical care procedures. But there are virtually no other jobs where having HIV is itself a bar to employment. It’s also worth noting that people with HIV cannot legally enter some countries, the US included, except in exceptional circumstances.

But on the plus side, HIV-positive people maintain and form new close relationships following their diagnosis, remain members of families, have children without putting their partners or children at risk of HIV, have fulfilling sex lives, maintain and develop careers, buy homes and make plans for the future.

That’s not to deny the severe health problems, loneliness, exclusion, poverty, and anguish that many people with HIV experience. All too often, such experiences are related to the discrimination that people with HIV experience from others, or the stigma that they have internalised about themselves.