TERRENCE HIGGINS TRUST
Terry Higgins was one of the first people in the UK to die with AIDS. He died aged 37, on 4 July 1982 at St Thomas' Hospital, London. By naming the trust after Terry, the founder members – his partner and friends – hoped to personalise and humanise AIDS in a very public way.
Setting up The Charity
In 1982, after Terry’s death, his partner Rupert Whitaker and his friends Martyn Butler, Tony Calvert, Len Robinson and Chris Peel met to discuss what could be done. The Terry Higgins Trust was subsequently set up by Martyn Butler and Rupert Whitaker with the intention of preventing others from having to suffer as Terry had
It focused on raising funds for research and awareness of the illness that was then called 'Gay-Related Immune Deficiency'. The following year, a public meeting about GRID was organised by London Lesbian and Gay Switchboard and the Terry Higgins Trust at which a small group of committed volunteers from a range of backgrounds came together
This included Tony Whitehead, who went on to become the trust’s first chief executive. In August 1983, the trust was reborn as a formal organisation, Terrence Higgins Trust, with a constitution and a bank account. By November we were a limited company with a Board of Directors, and by January 1984 we had gained charitable status.
We provided direct services immediately, including buddying/home-help, counselling, drug education and sex education. We were the first charity in the UK to be set up in response to the HIV epidemic and have been at the forefront of the fight against HIV and AIDS ever since.
How We've Developed
From its small beginnings in a flat in central London, we have grown to become the UK's leading HIV and sexual health charity, and one of the largest in Europe. We have always been at the forefront of the fight against HIV and AIDS. Since we were formed, the needs of people living with and affected by HIV have been fundamental to our development.
Our roots were in the gay community and, for many years, the HIV epidemic in the UK affected mainly gay men. Nonetheless, we've always worked in an equal way with gay men, haemophiliacs, sex workers and drug users from the start.
As the shape of the epidemic here has changed, so has the charity. There are now around half as many African people living in the UK diagnosed with HIV as gay and bisexual men, though the largest group of new diagnoses continues to be men who have sex with men. So existing services have been developed and new services introduced to meet ever-changing needs.
But the involvement of people with HIV has remained constant, and volunteers and staff who are living with HIV have, and always will be, central to the charity. Of the people who work with us, more than half are drawn from the communities we serve.
More than 10% of our employees are people living with HIV, 25% are from black or minority ethnic communities and more than a fifth are gay men.
In more recent years, the charity has also developed sexual health services – firstly for people living with or at risk of HIV, and then more broadly for the general population, especially young people who are most at risk of sexual ill health. Again, we have grown and evolved in response to the needs of people using its services.
Partnerships and Mergers
We have a strong record of collaboration with other agencies in both the voluntary and statutory sectors, and believes very firmly in the benefits of partnership working.
Since 1999 we have merged with a series of other organisations, both in London and further afield, and now has around 400 staff and more than 1,000 volunteers.
These mergers have brought with them a wealth of expertise and experience, enabled the charity to provide services across England, Scotland and Wales, and strengthened its response to HIV and other sexual health issues affecting the UK.
In 2010, we continued this strategy when we stepped in and quickly merged with the HIV charity Crusaid to ensure that its Hardship Fund remained available to help people living with HIV in greatest need.
During 2010 and 2011 we expanded our reach by working with the Elton John AIDS Foundation (EJAF) to launch LifePlus, the UK’s first national long term condition management programme for people living with HIV.
How common is HIV in the UK?
The most recent estimate suggests there were 89,400 people living with HIV in England in 2016. Of these, around 10,400 are undiagnosed so do not know they are HIV positive.
London continues to have the highest HIV prevalence in the country: of those in England living with HIV, 40% live in London. The borough where the highest proportion of residents have been diagnosed with HIV is Lambeth – this is 1.7% of the borough’s population.
Anyone can get HIV but people from some groups or parts of the world are more likely to be affected. In particular, men who have sex with men and black African people are disproportionately affected.
Of the 5,164 people diagnosed with HIV in the UK in 2016, 54% were gay or bisexual men.
Of the 2,110 heterosexual people diagnosed with HIV in 2016, 39% were black African men and women.
The overall mortality rate for people aged 15-59 who were diagnosed early was, for the first time, equal to that of the general population for the same age group.
WHAT IS HIV?
HIV stands for Human Immunodeficiency Virus. ‘Immunodeficiency’ refers to the weakening of the immune system by the virus. HIV has been passed on between humans for many decades but was only identified in the early 80s.
AIDS stands for Acquired Immune Deficiency Syndrome. It is a collection of illnesses (‘syndrome’) caused by a virus people pick up (‘acquire’) that makes their immune system weak (‘immune deficiency’) You can’t get an AIDS diagnosis unless you’re already HIV positive.
AIDS or late-stage HIV?
In the 1980s and early 90s, most people with HIV were eventually diagnosed with AIDS. Now, thanks to modern antiretroviral treatment, very few people in the UK develop serious HIV-related illnesses. The term AIDS isn’t used much by UK doctors. Instead they talk about late-stage or advanced HIV.
Untreated HIV and transmission
If left untreated, infection with HIV progresses through a series of stages: from flu-like seroconversion illness, through infections associated with the symptomatic stage, leading to late-stage HIV or AIDS.
If someone with HIV has a detectable viral load, they can pass on HIV through blood, semen, vaginal fluid, anal mucus and breast milk. 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's outside the human body.
Stages of HIV infection
1. 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's more severe and they may need to see a doctor. Seroconversion is the period when someone with HIV is at their most infectious
2. 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 you 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
3. Symptomatic HIV
The longer you live with HIV without treatment, the greater your risk of developing infections that your weakened immune system can’t fight: certain cancers, as well as the direct effects of HIV. Getting ill in one of these ways means that you now have symptomatic HIV
4. Late-stage HIV
If HIV has a chance to cause a lot of damage to your immune system, you may become ill from certain serious opportunistic infections and cancers. These illnesses are also known as AIDS-defining.
Most people living with HIV never experience late-stage HIV, though it depends on a range of factors, including how soon you start treatment, how well you respond to it and what lifestyle you lead.
AIDS-defining illnesses: Cancer, Pneumonia, Tuberculosis
Viral load and being undetectable
Viral load explained
Viral load is the amount of HIV in the blood. A viral load test shows how much of the virus is in the body by measuring how many particles of HIV are in a blood sample. The results are given as the number of copies of HIV per millilitre of blood – for example 200 copies/ml.
Why is viral load significant?
For the past 20 years, evidence has been building up to show that the likelihood of passing on HIV is linked to the amount of the virus in the blood.
The landmark PARTNER 1 study (2014) looked at over 58,000 instances of sex without a condom, where one partner was HIV positive and one was HIV negative. There were zero cases of HIV transmission in couples where the HIV positive partner was on effective treatment (‘undetectable’).
The statistical certainty of the PARTNER 1 study was slightly lower for receptive anal sex with ejaculation than it was for vaginal sex though. The PARTNER 2 study (2018), which looked only at instances of condomless anal sex, showed zero transmissions for both same-sex male couples and heterosexual couples.
With the results of both those studies, scientists have concluded that the chance of any HIV-positive person with an undetectable viral load transmitting the virus to a sexual partner is scientifically equivalent to zero.
Combined studies PARTNER 1 and PARTNER 2, with 2017’s Opposites Attract study, together make up about 126,000 occasions of condomless sex between serodiscordant partners, with no transmissions. This gives us the robust evidence to say, with confidence, that people on effective HIV treatment can’t pass on the virus.
What does it mean to be undetectable?
HIV medication (antiretroviral treatment, or ART) works by reducing the amount of the virus in the blood to undetectable levels. This means the levels of HIV are so low that the virus cannot be passed on. This is called having an undetectable viral load or being undetectable. It can take up to six months for some people to become undetectable from when they start treatment.
PARTNER 1 and PARTNER 2 studies provide robust evidence for gay couples and heterosexual couples that the risk of HIV transmission with suppressive ART (undetectable) is effectively zero, which supports the message of the international campaign, U=U (Undetectable = Untransmittable).
What is effective treatment?
We are using the term effective treatment to mean that someone is on treatment, taking it as prescribed and has an undetectable viral load. In the UK this is usually classed as a viral load below 20 copies/ml. The Partners PrEP study found that there remains a transmission risk within the first six months of treatment as the HIV positive partner’s viral load takes time to come down.
Therefore effective treatment means someone has been taking it as prescribed for at least six months and has an undetectable viral load. Over 90% of people diagnosed with HIV in the UK are on effective treatment and undetectable, and therefore are not infectious (U=U).
How variable is an undetectable viral load?
HIV specialists have decades of experience managing antiretroviral therapy and are confident that you can remain uninfectious as long as you: take your medication every day as prescribed, and have your viral load checked regularly.
The presence of other sexually transmitted infections (STIs) can potentially affect viral load, but in the PARTNER study there were no HIV transmissions even when other STIs were present. Those results held through the PARTNER 2 trial as well.
It is however important to remember that HIV treatment can only be successful if you have access to it and are taking it as prescribed.
HOW HIV TREATMENT WORKS
How HIV treatment works
HIV treatment does not cure HIV, but it stops the virus from reproducing in your body. It can reduce the amount of virus in the blood to undetectable levels, meaning that you cannot pass on HIV.
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. It's also known as antiretroviral therapy (ART), or highly active antiretroviral therapy - HAART for short..
When to start HIV treatment
It’s now recommended that everyone diagnosed with HIV starts treatment straight away after being diagnosed.
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 count (a measure of the health of your system).
The START study
This study found that people who delayed treatment until their CD4 count dropped to 350 –when people were previously advised to start treatment – had a significantly higher chance of developing AIDS-related illnesses such as cancers. Starting treatment will reduce your viral load to undetectable levels and protect your health. Early diagnosis and treatment means people living with HIV can expect to live as long as the general population.
‘Effective’ HIV treatment
We're using the term effective treatment to mean that someone is taking their treatment as prescribed and has an undetectable viral load. The Partners PrEP study found that there remains a transmission risk for the first six months of treatment, as the HIV positive partner's viral load takes time to come down.
That's why effective treatment means someone has been taking it as prescribed for at least six months and has an undetectable viral load.
Types of HIV treatment
Over 25 anti-HIV drugs are 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.
Guidelines recommend several combinations, each best suited to specific health needs and lifestyle. The most important part of treatment is to take all your drugs in the right way at the right time, which is known as adherence.
The classes of anti-HIV drugs are: Nucleoside reverse transcriptase inhibitors (NRTIs or ’nukes’). Nucleotide reverse transcriptase inhibitors (NtRTIs). Non-nucleoside reverse transcriptase inhibitors (NNRTIs or ‘non-nukes’). Protease inhibitors (PIs). Fusion and entry inhibitors Integrase inhibitors.
Deciding what type of HIV treatment to take
Treatment guidelines [PDF] have been developed by the British HIV Association (BHIVA), the organisation for specialist HIV doctors in the UK. They set out the medical treatment people living with HIV in the UK should receive. These guidelines recommend that everyone with HIV, regardless of their CD4 count, should start treatment immediately, usually with three anti-HIV drugs.
For people who have not been on HIV treatment, it’s recommended to start on a combination containing two NRTIs and either a ritonavir-boosted protease inhibitor, an NNRTI, or an integrase inhibitor. The preferred NRTIs for starting HIV treatment are emtricitabine (brand name Emtriva) and tenofovir disproxil (Viread), also available combined in a pill called Truvada.
These drugs are available combined with efavirenz in a pill called Atripla; combined with rilpivirine in a pill called Eviplera; or combined with elvitegravir and cobicistat in a pill called Stribild. Two other NRTIs, lamivudine and abacavir (combined in a pill called Kivexa), are an alternative for some people
The guidelines recommend taking a third, additional drug, which is usually one of the following: atazanavir (Reyataz), darunavir (Prezista), raltegravir (Isentress), dolutegravir (Tivicay), rilpivirine (Edurant) or elvitegravir (Vitekta).
Atazanavir and darunavir are boosted with another protease inhibitor, ritonavir (Norvir) to increase their levels in the body. Elvitegravir is boosted by a drug called cobicistat (Tybost) and is usually prescribed in the combination pill called Stribild. An alternative third drug to the preferred options is efavirenz (Sustiva).
What if I have another illness or a co-infection?
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 antiretroviral treatment or treat your other condition before starting your HIV treatment. This will be explained to you by the clinicians looking after you.
Does everyone experience side effects from HIV treatment?
Anti-HIV drugs can sometimes cause longer-term side effects. For example, some cause increases to cholesterol and other blood fats, or disturbances in the functioning of the liver or kidneys.
Lipodystrophy (body fat changes, such as losing some fat from the face, legs, arms or buttocks, or gaining fat elsewhere) is a side effect of some of the older anti-HIV drugs. These drugs are now avoided as much as possible for long-term use.
Dealing with side effects when they occur
It’s important never to stop taking medication, skip doses or reduce the intake of pills without first speaking to a doctor, as this creates the risk of developing resistance to several drugs. Your viral load could also be affected and transmission risk increased.
How side effects are treated
In most cases, side effects are worst in the first few weeks after treatment starts and gradually lessen until they disappear. They can often be controlled with other medications (for example, paracetamol for headache or Imodium for diarrhoea).
One of the widely used anti-HIV drugs is efavirenz (also called Sustiva and part of the combination pill Atripla). It makes some people feel drowsy or dizzy, unfocused and experiencing mood swings (including sadness or depression) or problems with sleeping.
These side effects are most likely to occur when treatment with the drug is first started. Some people find that they can reduce the problem by taking their medication two hours before going to bed – this is what the manufacturers of efavirenz recommend. Others prefer to take it in the morning to avoid sleep disturbance, which can include bad dreams.
It’s good to know that a lot of emotional and mental health support is available, either through your clinic, your GP or through local HIV organisations. Use our service finder or contact THT Direct on 0808 802 1221 for details.
Resistance and changing your treatment
What is HIV drug resistance?
Resistance is a term doctors often use. It means that some HIV cells mutate and carry on reproducing despite treatment. Every time HIV makes a new copy of itself, it ends up slightly different. Often these differences are not important but sometimes the new copy is different in a way that is resistant to the drugs you’ve been taking. This means that it will be able to reproduce again, even when you take the drugs.
How does resistance to anti-HIV drugs develop?
Resistance can develop if you don’t take your HIV treatment as prescribed, at the right time every day (often referred to as adherence). It's possible to have resistance to some drugs even before you start HIV treatment. You may have been infected with a strain of the virus that is already resistant to some anti-HIV drugs. The British HIV Association (BHIVA, the organisation for specialist HIV doctors in the UK) recommends that resistance tests are always carried out when you:
are diagnosed with HIV. are about to start treatment for the first time. are about to change treatment (if your viral load is detectable).
These tests will identify whether your strain of HIV is resistant to any anti-HIV drugs. If you're taking combination therapy, it's important to make sure that enough of the drugs are in your blood all the time so that they can do their job properly. Missed or late doses could mean there are reduced levels of the drugs in your blood. This can allow the virus to make more copies of itself, including drug-resistant copies.
What does it mean if resistance develops?
Drug-resistant HIV could lead to the treatment not working. You may be unaable to use the same drug again in the future, and, sometimes, also unable to use other drugs in the same class – this is called cross-resistance. The next combination of drugs you are given might be more complicated to take or cause more side effects.
If you're able to take each dose of the combination therapy at the right time each day, then the development of drug-resistant HIV is unlikely. That means the drugs will work for many years.
What can be done if I develop resistance?
If you have developed resistance to your antiretrovirals, your doctor will need to look at your treatment history and the results of a drug resistance test to decide the most suitable combination of drugs for you to take.
There are now a number of anti-HIV drugs that work against a version of the virus that is resistant to other drugs. The recommended options for people who are resistant to the three main classes of drugs – NRTIs, NNRTIs and protease inhibitors – are as follows:
the protease inhibitors darunavir (brand name Prezista) and tipranavir. the NNRTI etravirine. the integrase inhibitors raltegravir (Isentress), elvitegravir (Vitekta) and dolutegravir (Tivicay). the entry inhibitor maraviroc. the fusion inhibitor enfuvirtide
These drugs are most effective when used in combination with another drug that is active against HIV. Your doctor will look at your previous drug history and do a resistance test to find out which would work best for you.
It's very important that your new combination of drugs is taken properly. If not, you may develop resistance to those too, and this could mean that your HIV becomes very hard to treat.
How is the new treatment combination chosen?
There’s usually an alternative combination of drugs available – one more suited to a particular lifestyle or with better overall results.
Don't be worried about being frank with your doctor. They will not be shocked by, or judgmental about, anything you tell them – whether it's about using recreational drugs or the type of sex you're having. The more honest you are, the easier it will be for them to prescribe you the right combination.