7 things that people living with HIV want you to know (about its treatment and their lives)

How HIV treatment works and how it stops HIV being passed on

The likelihood of passing on HIV is directly linked to the amount of the virus in your blood. The lower the amount of virus in your blood, the lower the possibility of HIV being passed on.

When taken correctly, HIV treatment lowers the amount of virus in your blood. When the virus has been reduced to very low levels it’s called ‘undetectable’.

One of the main goals of HIV treatment is to allow everyone who is living with HIV to have an undetectable viral load. Having an undetectable viral load does not mean there is no HIV present, it means that it’s at such low levels that it cannot be passed on and the health of people living with HIV is protected.

Why should you trust the evidence?

For a long time, doctors and scientists had observed that effective HIV treatment seemed to be stopping HIV from being passed on and was allowing people living with HIV to live long healthy lives.

Because of these observations two major studies were conducted (called the Partner I and II studies) which looked at nearly 1,000 gay and straight couples where one partner was HIV positive and on treatment and the other was HIV negative. The studies researched over 100,000 sex acts in these relationships (including sex without using condoms) and the results showed that where the HIV positive partner had an undetectable viral load there were no cases of HIV transmission.

Since these study results were shared, ongoing real-world experience has continued to prove these findings. People living with HIV on effective treatment and having an undetectable viral load in countries around the world are living a longer healthy life and the numbers of HIV transmissions are going down.

These findings and the undetectable/can’t pass on HIV message has the backing of the World Health Organisation (WHO), UNAIDS, United Kingdom Health Security Agency (UKHSA) and hundreds of other leading public health experts and organisations worldwide.

What treatments would you take for HIV?

HIV treatments are known as antiretrovirals and are a combination of certain drugs, sometimes combined into one pill and sometimes taken as a couple of pills.

Two of the main drugs given are known as the ‘backbone’ of the treatment and are supported with one other drug.

Currently, the combination given at first contains a ‘backbone’ of a drug called Emtricitabine and either Tenofovir Disoproxil or Tenofovir Alafenamide as the support drug. There are several other ‘regimens’ with different drugs used as the ‘backbone’ with other support drugs.

Many of the drugs used are now available as generic (unbranded) versions and are therefore cheaper for the NHS. Where a generic version of a drug is available it’s very likely that someone who is using that drug will be moved onto the generic version. Both versions of the drug work as well as one another, the only difference is the price.

Rich shared his experience of treatment, saying: 'Not everybody understands that you can live healthily with HIV. I live a full and exciting life. The medication is so effective that you can live healthily. My HIV medication is one pill a day – once a day – and it’s part of my life routine.'

Taking HIV medications before and during pregnancy

It is considered safe to take HIV medications when trying to become pregnant and during pregnancy.

Ideally, someone who is living with HIV and planning on becoming pregnant will already be on treatment and have an undetectable viral load. If you do get pregnant while on treatment and have an undetectable viral load you will continue with the same drugs throughout your pregnancy.

Anyone who is diagnosed HIV positive during the early stages of the pregnancy will be strongly encouraged to go straight onto treatment with a view to getting the viral load down as much as possible before they give birth. This is to minimise the likelihood of passing the infection on to the baby during the pregnancy or birth - you may hear doctors call this vertical transmission.

Can you switch your drugs?

Changing the drug therapy someone is on is based on several factors, the main one being if the treatment isn’t being as effective as it could be. Your response to the current treatment, how the drugs work together, how well you tolerate the drugs and any possibility of drug resistance will be considered.

So, the answer is yes, in discussion with your doctor, you can change the drugs you are using as they understand that it’s difficult to use drugs that are causing you issues.

Building a relationship with your doctors

You will build an ongoing relationship with your consultant at the clinic you are using when you start your treatment. They will monitor drug levels and effectiveness and discuss with you whether you are having ongoing side effects or other issues with using the drugs.

You are an active partner in your treatment and care and can discuss any concerns you have or ask for any further information you need. Doctors are there to inform you and help with your care decisions, not to make those decisions for you without your input.

You will be encouraged to stay on one course of treatment for a while to allow your body to get used to it. Most people’s side effects stop after a month, although they may go on for three months or more. If after these first months you are still having issues talk with your doctor about your experiences and if they think it’s useful to change treatments.

In the same way as you can discuss changing your treatments if you are unhappy on them, you are able to ask to see a different doctor or even change your clinic if you are unhappy with the experience you are having. You can (and should) change your clinic if you move and the distance is too far for you to travel to that clinic comfortably. All the records of your care will be transferred to your new clinic, and you will continue your care there.

Living with HIV

So many people living with HIV talk about how great they feel knowing the treatment they are using will allow them to live a long and healthy life, knowing that they can’t pass on HIV to their partners. We asked Charity and Sue to share their experiences.

Charity says: 'I was diagnosed with HIV almost 20 years ago and have lived a healthy life ever since. It hasn’t always been easy, but I’m proud of what I’ve achieved since being diagnosed and grateful for the friends I’ve made along the way. I speak publicly about living with HIV to show that all the rumours about HIV are false, I’m not sick – I’m not dying. I will live a normal lifespan and the medication I take keeps me well and also means that HIV can’t be passed onto partners. I am not ‘contagious’ or a ‘risk’.'

Sue says: 'I take one pill a day and have full check-ups and blood tests twice a year. Otherwise, I live normally. Too many people don’t know the truth about HIV. Today, if you test positive you go onto the medication straight away which keeps you healthy and will make you undetectable, which means you can’t pass it on to anyone else.'

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