Introduction

HIV is a long term health condition which is now very easy to manage. HIV stands for human immunodeficiency virus. The virus targets the immune system and if untreated, weakens your ability to fight infections and disease.

Nowadays, HIV treatment can stop the virus spreading and if used early enough, can reverse damage to the immune system.

HIV is most commonly transmitted through having unprotected sex with someone with HIV who isn't taking HIV treatment. Unprotected sex means having sex without taking HIV PrEP or using condoms.

HIV can also be transmitted by:

  • sharing infected needles and other injecting equipment
  • an HIV-positive mother to her child during pregnancy, birth and breastfeeding

All pregnant women are offered an HIV test and if the virus is found, they can be offered treatment which virtually eliminates risk to their child during pregnancy and birth.

People who take HIV treatment and whose virus level is undetectable can't pass HIV on to others. Although there is no cure for HIV yet, people living with HIV who take their treatment should have normal lifespans and live in good health.

Without treatment, people with HIV will eventually become unwell. HIV can be fatal if it's not detected and treated in time to allow the immune system to repair. It's extremely important to test for HIV if you think you've been exposed.

How do you get HIV?

HIV is found in body fluids of a person with the virus, whose levels of virus are detectable.

The body fluids most likely to contain enough virus to pass on HIV to another person are:

  • semen (including pre-cum)
  • vaginal fluid
  • anal mucus
  • blood
  • breast milk

HIV is a fragile virus and does not survive outside the body for long.

HIV is most commonly passed on through unprotected anal or vaginal sex. There is a very low risk of getting HIV through oral sex and there can be a small risk through sharing sex toys, which can be eliminated by using fresh condoms for each person using the toy.

Read more about what causes HIV

How do I know if I have HIV?

Seek healthcare advice as soon as possible if you think you might have been exposed to HIV.

The only way to find out if you have HIV is to have an HIV test. This involves testing a sample of your blood or occasionally saliva for signs of the infection. In NHS services this usually involves a blood test with results available within a few days.

Some services, including HIV or sexual health charities, may provide saliva tests. Saliva tests that indicate a person may have HIV will need to be confirmed through a blood test.

It's important to be aware that:

  • HIV tests may need to be repeated four weeks after potential exposure to HIV, this is known as the "window period", but you shouldn't wait this long to seek help
  • you can get tested in a number of places, including your GP surgery, sexual health clinics and clinics run by charities
  • clinic tests can sometimes give you a result in minutes, although it may take a few days to get the result of a more detailed blood test
  • home-testing or home-sampling kits are available to buy or order online or from pharmacies – depending on the type of test you use, your result will be available in a few minutes or a few days

If the test shows you have HIV, you'll be referred to a specialist HIV clinic for some more tests and a discussion about your treatment options.

Read more about diagnosing HIV

Treating and living with HIV

Treatments for HIV 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 usually 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 3 antiretrovirals (although some people take 1 or 2) and it's vital that the medications are taken every day as recommended by your doctor.

Taking a number of different drugs doesn’t always mean taking many tablets though as some drugs are combined together into one tablet.

For people living with HIV, taking effective antiretroviral therapy (where the HIV virus is "undetectable" in blood tests) will prevent you passing on HIV to sexual partners.

It's extremely rare for a pregnant woman living with HIV to transmit it to their babies, provided they receive timely and effective antiretroviral therapy (ART) and medical care. An HIV test is routinely offered to all women in Scotland as part of antenatal screening.

Read more about living with HIV

Preventing HIV

It has never been easier to prevent the transmission of HIV.

Someone living with HIV who takes their HIV treatment and who has had an undetectable level of virus for six months, cannot transmit HIV to anyone else. Over 90% of all people diagnosed with HIV in Scotland have undetectable virus. It's therefore extremely rare for someone to get HIV from a person that knows they have the virus.

HIV Pre Exposure Prophylaxis (PrEP)

PrEP is a form of HIV medication taken by someone who does not have HIV which will help to prevent them from getting HIV. In Scotland PrEP is available on the NHS through sexual health clinics for people who are at risk of getting HIV. PrEP only provides protection from HIV and not from any other sexually transmitted infections.

Condoms (and lubricant)

Properly used condoms (and lubricant for anal sex) are effective at preventing transmission of HIV as well as other sexually transmitted infections and pregnancy.

HIV Post Exposure Prophylaxis (PEP)

PEP is a form of HIV medication taken by someone who does not have HIV who has or may have been very recently been exposed or had a risk. Ideally PEP should be taken within 24 hours, but it can be taken up to 72 hours after exposure. The earlier it is taken the more effective it is.

You can get PEP from sexual health clinics and A+E departments when the sexual health clinic is not open.

Clean Injecting Equipment

Using fresh injecting equipment, including any needles, syringes, swabs and spoons and avoiding sharing will eliminate any risk of HIV.

How common is HIV?

At the end of 2017, there were an estimated 5099 people in Scotland living with HIV. The majority got the virus through sex.

Around 1 in every 1087 people in the Scotland has HIV, but the three groups with highest rates of HIV are:

  • gay and bisexual men or other men who have sex with men
  • people from countries with high HIV prevalence, especially sub Saharan African countries
  • people who share injecting equipment (including needles, syringes, spoons and swabs) or who have sex with people who inject drugs

The World Health Organisation estimates that around 36.9 million people in the world are living with HIV.

Symptoms

People who are infected with HIV, often experience a short flu like illness that occurs 2 to 6 weeks after infection. This is known as primary HIV infection.

The most common symptoms are:

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

Other symptoms can include:

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

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 may often not cause any further symptoms for many years. During this time, HIV continues to be active and causes progressive damage to your immune system.

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 occurring and reverse them.

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

Routes of HIV transmission

In Scotland, HIV is most commonly transmitted by having sex with someone who has HIV without using any form of protection, such as HIV PrEP or condoms.

A person with HIV can only pass the virus to others if they have a detectable level of virus. People living with HIV who are taking treatment and have undetectable levels of virus in their bodies can't transmit HIV to others.

Over 90% of people living with HIV in Scotland have undetectable levels of virus.

The main routes of transmission are unprotected receptive or insertive vaginal and anal sex. The risk of transmitting HIV through oral sex is extremely low.

Other ways of getting HIV include:

  • sharing needles, syringes and other injecting equipment
  • from mother to baby before or during birth when the mother isn't taking HIV medication
  • from mother to baby by breastfeeding when the mother isn't taking HIV medication
  • sharing sex toys with someone infected with HIV and who isn't taking HIV medication (or by not using a fresh condom on sex toys for each person using it)
  • blood transfusion (outside of the UK)

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 (who has detectable levels of virus in their body) has to get into your blood.

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

  • semen (including precum)
  • 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
  • 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

Who is most at risk?

Having unprotected sex increases the risk of being infected with HIV. Unprotected sex means having sex where you are not taking HIV PrEP or using condoms. People who are at higher risk of becoming infected with HIV include people who are not taking PrEP medication and who are:

  • men who have had unprotected anal sex with men
  • women who have had unprotected sex with men who have sex with men
  • people who have had unprotected sex with a person who has lived or travelled in a high HIV prevalence country
  • people who inject drugs
  • people who have had unprotected sex 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

 

Diagnosis

The only way to find out if you have HIV is to have an HIV test, as symptoms of HIV may not appear for many years.

HIV testing is provided to anyone free of charge on the NHS. Many clinics can give you the result on the same next day and home-testing and home-sampling kits are also available. Home-testing and home sampling kits are also available from some services and charities or to buy online.

Who should get tested?

Anyone who thinks they could have HIV should get tested.

Certain groups of people are at particularly high risk and are advised to have regular tests. For example:

  • gay and bisexual men or men who have sex with men are advised to have an HIV test at least once a year, or every 3 months, if having sex without HIV PrEP or condoms with new or casual partners
  • women and men from countries with high HIV prevalence, especially from sub Saharan Africa are advised to have an HIV test, if having sex without using HIV PrEP or condoms with new or casual partners
  • people who inject drugs or who have sex without using HIV PrEP and condoms with people who inject drugs

Read more about how you get HIV

When should I get tested?

Seek health care advice immediately if you think there's a chance you could have HIV. The earlier it's diagnosed, the earlier you can start treatment and avoid becoming ill.

Some HIV tests may need to be repeated four weeks after exposure to HIV infection, but you shouldn't wait this long to seek help.

Where can I get an HIV test?

There are various places you can go to for an HIV test, including:

An HIV test is one of the range of tests routinely offered to all women in Scotland as part of antenatal screening. There are also home-sampling and home-testing kits (see below) you can use if you don't want to visit any of these places.

Types of HIV test

There are 4 main types of HIV test:

  • full blood test – where a sample of blood is taken in a clinic and sent for testing in a laboratory. Results are usually available within a few days.
  • "point of care" test – where a sample of saliva from your mouth or a small spot of blood from your finger is taken in a clinic. This sample doesn't need to be sent to a laboratory and the result is available within a few minutes.
  • home-sampling kit – where you collect a saliva sample or small spot of blood at home and send it off in the post for testing. You'll be contacted by phone or text with your result in a few days. You can buy them online or from some pharmacies.
  • home-testing kit – where you collect a saliva sample or small spot of blood yourself and test it at home. The result is available within minutes. It's 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 available from overseas.

If the test finds no sign of infection, your result is "negative". If signs of infection are found, the result is "positive".

The full blood test is the most accurate test and can normally give reliable results from four weeks after infection. The other tests whilst also accurate, may not give a reliable result for a longer period after exposure to the infection (this is known as the "window period").

For all these tests, a full blood test should be carried out to confirm the result if the first test is positive. If this test is also positive, you'll be referred to a specialist HIV clinic for some more tests and a discussion about your treatment options.

Treatment

Although HIV cannot be cured, it's a very manageable long term condition and effective treatment is available to enable individuals to live a long and healthy life.

If you're diagnosed with HIV, you'll be referred to a specialist HIV clinic for treatment, regular monitoring and care.

It's recommended that everyone diagnosed with HIV starts treatment shortly after being diagnosed to keep in good health and free of symptoms. Treatment for HIV is generally very well tolerated.

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 can develop resistance to a single HIV drug very easily, but by taking a combination of different drugs or with support from your doctor in taking your treatment, resistance is less likely. Most people with HIV take a combination of three antiretrovirals (although some people take 1 or 2) and it's vital that the medications are taken every day as recommended by your doctor.

For people living with HIV, taking effective antiretroviral therapy (where the HIV virus is "undetectable" in blood tests) will prevent you passing on HIV to sexual partners.

Want to know more?

Missing a dose

HIV treatment works best if you take your pills regularly every day. You will need to develop a daily routine to fit your treatment plan around your lifestyle.

Want to know more?

Side effects

HIV treatment is generally very well tolerated. Your HIV clinic will monitor your health for side effects.

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

Prevention

The best ways to prevent HIV are to take PrEP before exposure to HIV, use a condom for sex and to never share needles or other injecting equipment (including syringes, spoons and swabs).

Taking PrEP before you're exposed to HIV means that there's a drug inside of you to block HIV if it gets into your body, so it can't infect you.

If you have HIV, it's important to take your HIV medication. If HIV medication makes your viral load undetectable, you won't pass the virus on to anyone else.

HIV Pre Exposure Prophylaxis (PrEP)

If you think you may come into contact with HIV, taking anti-HIV medication beforehand will stop you becoming infected.

For it to be effective¸ the medication, called pre-exposure prophylaxis or PrEP, can be taken in 2 ways:

  • taken regularly (one tablet per day)
  • taken when you know in advance that you'll be having sex

This second method of taking the medication only when needed means taking two tablets 24 hours before sex, one tablet 24 hours after sex and another tablet 48 hours after sex.

If you take PrEP as recommended, it will protect you from HIV. If you take it incorrectly it may not work.

Although PrEP is effective in protecting you from HIV, it will not protect you from other STI's like condoms would. If you're taking PrEP via NHS Scotland, you need to have an HIV and STI test every three months.

You can ask about whether PrEP is right for you at sexual health clinics.

Want to know more?

HIV Post Exposure Prophylaxis (PEP)

If you think you may have been exposed to HIV and you haven't taken PrEP medication or used a condom, you should take PEP medication.

PEP is a form of HIV medication taken by someone who doesn't have HIV who has or may have been very recently exposed or had a risk. It can be taken up to 72 hours after exposure. The earlier it is taken the more effective it is.

PEP is available from sexual health services or out of hours from A&E.

Condoms

Condoms come in a variety of shapes, 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-cum 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.

You can get free condoms in most areas of Scotland, check your local sexual health service website for details.

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 anal or vaginal tears caused by dryness or friction, and it can also prevent a condom from tearing. Lubricant for vaginal sex is only recommended for women that have low vaginal moisture.

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.

Find out more about what sexual activities can put you at risk of HIV and other STIs on the Sexual Health Scotland website.

Sharing needles and injecting equipment

If you inject drugs, you shouldn't share needles, 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.

A GP or drug counsellor should be able to advise you about free injecting equipment provision including needles.

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

Living with HIV

HIV is a long term condition which is easy to manage and treat. People living with HIV who are on treatment will live a near normal lifespan in very good health.

Adjusting to living with HIV can take a while for some people. Your HIV clinic can provide support for you in managing your condition and in adjusting to living with the condition. They will also be able to signpost you to support services provided by HIV support organisations.

Practical issues you might require support with include psychological support, telling people about your HIV, sex and relationships, pregnancy and financial support.

Your HIV medication

Your HIV clinic will provide you with advice and support to help you take your HIV medicine and stay well and healthy.It’s best to tell your HIV doctor or HIV pharmacy about all other drugs –including over-the-counter medications, supplements, and recreational drugs – you are taking to check they won’t interact with your HIV medication.

Your health

In addition to taking HIV medication, there are many things you can do to improve your general health and reduce your risk of falling ill.

These include:

  • regular exercise
  • healthy eating
  • stopping smoking
  • reducing the amount of alcohol you drink

Reviewing your treatment

Because HIV is a long-term condition, you will be in regular contact with your healthcare team, who will review your treatment on an ongoing basis.

A good relationship with the team means that you can easily discuss your symptoms or concerns. The more the team knows, the more they can help you.

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

Find local HIV support services.

Preventing infection

If you have HIV, you should take extra precautions to prevent exposure to other infections.

Everyone with a long-term condition such as HIV is encouraged to get a flu vaccination each autumn to protect against seasonal flu (influenza).

It is also recommended that they get a pneumoccocal vaccination. This is an injection that protects against a serious chest infection called pneumococcal pneumonia.

Pregnancy

If you're planning a pregnancy and you or your partners viral load is undetectable, your clinic can support you to time unprotected sex to increase your chance of pregnancy. Sperm washing is no longer required to successfully prevent passing on HIV to your child. HIV 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.

It is safest to feed your baby with formula milk. Free formula milk is usually available through your HIV clinic. They can also provide advice on breastfeeding.

Further information

Find out more about living with HIV on the HIV Scotland website.