HIV is a condition that carries around a lot of stigma – fuelled by stories from the past and myths that don’t seem to fade. However, the truth of living with HIV in Scotland today is quite different. With effective treatments and early diagnosis, people with HIV can expect to live long, healthy lives.
In this section, you’ll find more information about living with HIV, from support with a new diagnosis to telling other people.
HIV stands for ‘Human Immunodeficiency Virus’.
First identified in the 1980s, HIV infects the body’s white blood cells and stops the immune system from functioning properly. In other words, HIV makes it harder for the body to fight everyday infections and makes it easier for people to become ill.
There is currently no cure for HIV but there are lots of effective treatments that mean you can live a long and healthy life with HIV.
Symptoms of HIV are different for everyone.
- Most people with HIV experience a short, flu-like illness that occurs 2-6 weeks after becoming infected. This is called a ‘seroconversion’ illness. For some people, typical symptoms of this flu-like illness can include fever, sore throat, swollen glands, aches, pains and a blotchy rash. For others, these symptoms may go unnoticed.
- After this, HIV may not cause any symptoms for several years and you may feel well. However, HIV is still present in the body and is causing damage to your immune system.
- If untreated, HIV can take up to 10 years for symptoms to develop.
- Once symptoms have developed, HIV is called AIDS (Acquired Immunodeficiency Syndrome). Untreated HIV is called AIDS because there are lots of different symptoms once the immune system becomes severely damaged. Symptoms can include weight loss, chronic diarrhea, night sweats, skin problems, recurrent infections and life-threatening illnesses.
- In Scotland, it is unusual for HIV to become AIDS because most people are diagnosed early and there are many, highly effective treatments available for anyone living with HIV.
- If you think you may have been at risk of HIV, the first step is getting an HIV test. Find out where you can get tested in your local area here.
- If you are worried about HIV, we’re here to help you. Get in touch with us for support and advice here.
HIV is passed on through:
- infected bodily fluids including semen
- vaginal fluid (including menstrual blood)
- anal secretions
- breast milk
In Scotland, HIV is most commonly passed on through:
- unprotected sex (sex without condoms) with a person living with HIV who is not on treatment
- through sharing injecting equipment
HIV is also passed on:
- from mother to baby, before or during birth or by breastfeeding.
- through sharing sex toys with someone who is living with HIV but is not on treatment
- through needle stick injury (although this is extremely rare)
HIV is NOT passed on through:
- Kissing or hugging
- Being bitten
- Contact with unbroken skin
- Being sneezed on
- Sharing towels, blankets, mugs or cutlery
- Using the same toilet, bath, shower or swimming pool
- CPR, or mouth to mouth resuscitation
- Contact with animals or insects like mosquitoes
If you think you have been at risk of HIV recently or in the past, you can find the nearest place to get an HIV test by searching our simple service directory here. If you’re unsure, have any questions or concerns, you can get in touch with us for support and advice. Getting an HIV test is quick, easy and confidential, with some tests giving you results in minutes. HIV tests are provided to anyone free of charge on the NHS.
There are a few different types of HIV test:
- Blood test – this is where a small amount of blood is taken in a sexual health clinic, GP surgery or hospital. The blood is sent to a laboratory to test for HIV and the results are available within a few days. This is the most accurate HIV test and can normally give you reliable results within 1 month of infection.
- Point of care test – this is where a sample of saliva from your mouth or a few drops of blood from your finger is taken. The sample of your saliva or blood is then tested and the result is available to you within a few minutes. Point of care tests are available in all sexual health clinics, some GP surgeries and from Waverley Care testing services in Glasgow, Edinburgh, Inverness, Argyll & Bute, Lanarkshire and Forth Valley.
Home sampling kit – this is where you collect a sample of your saliva or a few drops of blood at home and send it off for testing though the post. You will then be contacted by phone or text with your result in a few days. Some people are eligible for a free sampling kit or, you can also buy home sampling kits from some pharmacies or online. Find out if you are eligible for a free home sampling kit here.
Home testing kit – this is where you collect a sample of your saliva or a few drops of blood yourself and test it at home. Home testing kit results are available within minutes however, it’s important to check that any test you buy is licensed for sale in the UK and has a CE quality assurance mark.
If a test does not find HIV in your blood, the result is ‘negative’. If a test finds signs of HIV in your blood, the result is ‘positive’. If you have a ‘positive’ result on a point of care test, home sampling kit or home testing kit, you will be asked to take a second blood test to confirm the results. This is because some tests may not give you a reliable result for a longer period after infection. If the second test is also positive, you will be referred to a specialist HIV clinic. Find out more about coping with a new HIV diagnosis here. If you have used a home sampling kit or home testing kit and have any questions or concerns, get in touch with us for support and advice.
- In Scotland, HIV is most commonly passed on through unprotected sex (sex without condoms) with a person who is living with HIV but is not on treatment or; through sharing injecting equipment.
- If you do not have HIV but are worried about HIV transmission, you can prevent the spread of HIV by using condoms and PrEP or PEP/PEPSE.
- If you are living with HIV and are worried about HIV transmission, you can prevent the spread of HIV through sex by taking your HIV medication as prescribed by your HIV doctor for more than 6 months, reducing the amount of HIV in your body until you have an undetectable viral load. This is called ‘Undetectable = Untransmittable’ (U=U). You must confirm your viral load is undetectable with your HIV doctor.
- If you are living with HIV or worried about HIV transmission through injecting, you can prevent the spread of HIV by always using clean injecting equipment and, never sharing injecting equipment.
- If you are worried about HIV transmission, we’re here to help you. Get in touch with us for support and advice.
While there is no cure for HIV, there are now lots of very effective treatments that mean people living with HIV can live a long and healthy life.
While there is no cure for HIV, there are now lots of very effective treatments that mean people living with HIV can live a long and healthy life.
HIV treatments works by increasing the number of CD4 cells in your body. CD4 cells help protect your body from infections and other diseases.
HIV treatments also prevent the HIV virus from multiplying, reducing the amount of HIV in your blood.
Antiretroviral Therapy (ARVs)
- If you are living with HIV, you will usually take between 1 and 4 pills a day, depending on the combination of HIV medicines your HIV doctor prescribes to you.
- Different combinations of HIV medicines work for different people. Patients must work closely with their doctors to find the right combination for them.
- If taken as prescribed for more than 6 months, the medication will help to reduce your viral load (amount of HIV in your blood) to the point where it is undetectable and the risk of passing on the virus is dramatically reduced. This is called undetectable=untransmittable (U=U).
- Having sex with someone who is HIV positive and has an undetectable viral load carries a very low risk of passing on HIV.
- If you do not take your medication as prescribed, they can become less effective in your body, this is also called ‘drug resistance’.
- Not taking medication as prescribed can include: not following specific directions on when and how to take your medication; missing medication; taking more than prescribed at one time.
- Most people taking anti-retrovirals nowadays have no side effects, or very minor side effects that do not affect quality of life. While there are side effects, as there are with any medication, in the majority of cases, the more severe impacts once associated with HIV medications are no longer a problem thanks to medical advances.
- A new type of treatment for HIV is now available in Scotland. Injectable treatment is suitable as an alternative to ARVs.
- Injections of Cabotegravir and Rilpivirine can be given once every two months to treat HIV. An injection is given in each hip.
- Not everyone is eligible for injectable treatment. You must already take ARVs and have had an undetectable viral load for at least six months. You must also be able to attend the clinic every two months, and have no resistance to NNRTs or INSTI tablets.
- Injectable treatments are not recommended during pregnancy.
- Currently, HIV clinics in Scotland are only offering injectable treatment to those with the greatest need. This includes people who have physical difficulty swallowing tablets, or who find taking a daily pill has a significant effect on their mental health and wellbeing.
- There is a possibility that injectables will not work for everyone. This is called virological failure, and effects around 1 in 60 people after two years.
- If you think that injectables might be an option for you, ask your clinician at your next appointment.
- More information on injectable treatments can be found on the BHIVA website.
If you need help or advice with HIV treatment, get in touch with us for support.
Coping with a new diagnosis can be a scary time for anyone.
There can be lots of unknowns, from having new information about your health to take in and appointments to attend to figuring out who to tell and how to tell them.
We’re here to support you every step of the way – get in touch with us for support and advice.
- In the days, weeks and months after you are first diagnosed with HIV, you may experience lots of emotions. It’s normal to feel anger, shock, depression, anxiety or even denial. You might feel like you don’t want to talk about it or, that you can’t talk about anything else. Everyone responds differently to a new diagnosis and there is no right or wrong way to feel.
- Reaching out for emotional support is the first step in learning to live well with HIV. You are not alone and there are people there to support you. You can reach out to us, where we will work with you helping you understand what’s going on.
- You can also get support from our Peer Mentors, who have each experienced a new HIV diagnosis and can help you cope through learning from their experience.
- Alongside support services and Peer Mentoring, it’s important to find a family member or friend who you can share your diagnosis with, if possible. Finding someone to tell can be difficult, but when thinking about who to approach first it’s worth considering; who is someone whose response you can more or less expect will be supportive?
- There can often be lots of practical things to consider with a new diagnosis. These might include making sure you can get to your specialist HIV clinic, finding ways to take your medication, managing side effects of treatment or getting benefits and housing in place. We can support you through it all.
- Locating a support group is another way of coping with a new diagnosis. Depending on where you live there may be an in-person support group. You can find out more by searching your location in our simple service directory.
- There are lots of great podcasts, videos and resources which can help you learn about the experiences of others living with HIV.
According to BHIVA (British HIV Association) Guidelines, if you are living with HIV it is recommended that you formula-feed your baby to eliminate any chance of passing on HIV.
- This is because HIV is present in breast milk.
- However, if you are on treatment for more than 6 months and the amount HIV in your body is undetectable (U=U), you may be supported to breastfeed by your HIV doctor.
- If you are living with HIV and considering breastfeeding, you must first discuss this with your HIV doctor.
So what does that mean?
- HIV treatments work by reducing the amount of HIV in your body.
- When the amount of HIV gets below a certain point, HIV becomes undetectable.
- In other words, it means HIV can no longer be found in your blood.
- Your viral load will become undetectable only if you have been taking HIV treatment for more than 6 months and if you continue to take it as prescribed.
- Your HIV doctor is the only person who can confirm that you are undetectable.
- If your viral load is undetectable and you are taking your HIV treatment as prescribed by your HIV doctor for more than 6 months, you cannot pass HIV on through sex. This is called untransmittable.
- It’s important to remember that U=U ONLY prevents HIV being passed on through sex – it doesn’t prevent HIV being passed on through other routes such as sharing injecting equipment.
- You won’t pass HIV on through sex ONLY if you have had an undetectable viral load for 6 months and, if you do not have any STIs (Sexually Transmitted Infections) such as gonorrheoea, syphilis and chlamydia.
- U=U is only about HIV and does not prevent passing on hepatitis C or other STIs. Using condoms and lube is the best protection against STIs. Never sharing injecting equipment is the best protection against hepatitis C.
PrEP (Pre-Exposure Prophylaxis) is when anti-HIV drugs are taken before sex to reduce the chances of someone becoming infected with HIV.
In other words, PrEP is a pill that stops the person taking it from getting HIV.
Along with partner organisations, we are supporting www.prep.scot, an online source of information about PrEP, including details of the eligibility criteria used by the NHS.
Here's what you need to know about PrEP:
- Where can I get PrEP? PrEP is available through sexual health clinics. To find out more about PrEP, including PrEP information and your local sexual health services, visit your local health board website or get in touch with us for advice.
- Will I be eligible for PrEP from the NHS in Scotland? Check out the graphic below to see who is eligible for PrEP in Scotland.
- What if I'm not eligible? Can I still access PrEP? There will be some people who are not eligible who would still like to take PrEP. Some people choose to buy PrEP online at a cost of around £50 for each month’s supply. If you get, or intend to get your PrEP online, you can have your monitoring done at sexual health clinics in Scotland. We can also give you advice on PrEP and whether it is an option for you - get in touch with us for advice and support.
- UK community websites have lots of information about PrEP and how to buy it online:
- We cannot state that there is absolutely no risk if you choose to buy PrEP online because the PrEP is not sourced directly from the manufacturers. However, our teams can help you understand what is involved in self-supplying PrEP.
- For more information about PrEP, read the Know about PrEP prevent HIV (Scotland edition) information booklet.
If you’ve had sex and think you may have been exposed to HIV, you can access treatment known as PEP or PEPSE (Post-Exposure Prophylaxis).
Delivered as a four-week course of tablets, PEP (also called PEPSE) can vastly reduce your risk of HIV infection after you have been exposed. PEP is not the name of a specific drug but involves the use of different anti-HIV medications.
Here are some of the most common questions asked about PEP:
- Where can I get PEP? You should be able to get PEP at most sexual health clinics and in hospitals (usually in the A&E department).
- When should I take PEP? The sooner you start the course after you think you may have been at risk of HIV, the better. Ideally, this should be within the first 24 hours, though PEP may be offered up to 72 hours after exposure. Beyond this window, PEP will not be given.
- How long do I have to take PEP for? The course of tablets lasts 4 weeks. It’s important not to miss any doses and to take the tablets at the times you are told to take them.
- Does PEP have any side effects? Like all medications, PEP drugs can cause some side effects. You may experience nausea, diarrhea, headaches, and tiredness among other effects. Your doctor will be able to discuss these with you prior to prescribing PEP. You may also need to have some blood tests taken during the course of treatment to monitor its effects on the body.
- If someone is taking PEP does it make them immune to HIV? No. Unsafe sex while taking PEP could let more HIV into your body, making PEP much less effective. If you have taken PEP in the past and are HIV negative, you are still at risk of HIV infection in future.
- Is PEP an effective substitute for using condoms? No, even with PEP available, it’s still important to use condoms. PEP is not 100% effective and you are not always guaranteed to be able to access it. Also, having sex without a condom while you are taking PEP carries a potential risk of exposing you or your partner(s) to HIV and other STIs.
- What if I’m already HIV positive? If you already have HIV and have a regular sexual partner or partners, your HIV clinic will usually discuss options around protecting them with you. Thankfully due to the advances in treatment for HIV and if you maintain your treatment regime, your viral load (amount of HIV in your body) can be undetectable (U=) and thus reduce the risk of transmission to your partner significantly.