HIV & AIDS treatment in the UK

Since anti-HIV treatment has been available in the UK, it has had a profound impact upon the lives of those living with HIV and AIDS. The number of people dying from AIDS has dramatically decreased and HIV is now generally thought of as a chronic disease. However, despite the introduction of free antiretroviral treatment, there are still people dying from AIDS-related illnesses in the UK. Around a third of these AIDS-related deaths occur because people are being diagnosed too late, at a stage when antiretroviral treatment is less likely to work.¹ There is the additional risk that HIV may become resistant to the drugs if treatment is not adhered to.
Issues that will be discussed in this page include:

• When HAART was introduced in the UK
• How many people are receiving treatment and care for HIV in the UK
• Who is able to receive free treatment and care for HIV/AIDS in the UK
• Treatment for HIV positive pregnant women in the UK
• How to access treatment in the UK
• The cost of antiretroviral treatment in the UK
• 'Health tourism'
• Why people still die from AIDS in the UK

For more information on antiretroviral therapy see our Introduction to HIV and AIDS Treatment in our Treatment and Care section.

When was HIV treatment introduced in the UK?

Before the advent of antiretroviral treatment in the UK, there was little that could be done to stop the onset of AIDS. Lifespan was limited and treatment for opportunistic infections was primarily aimed at controlling pain and other symptoms. This meant that when the first AIDS cases were reported in the UK at the beginning of the 1980s, the majority of AIDS patients died within 2 years.² The situation started to improve during the middle of the 1980s when it was discovered that people with AIDS could live for longer if treated with antiretroviral drugs.
AZT (zidovudine), the first drug approved for treatment of HIV, became widely available in the UK in 1987. AZT belongs to a group of drugs called nucleoside analog reverse transcriptase inhibitors (NRTIs). Although in the short-term AZT effectively suppresses HIV, over a period of time HIV tends to become resistant to the drug. Additionally, when it was first introduced, side effects were severe as the dosage was very high. These days AZT is very rarely used on its own and is almost always taken as part of combination therapy. It is also taken in a smaller dose than when first introduced.

Tenofovir tablets - NRTIs that are manufactured by Gilead under the brand name Viread

In the early 1990s other NRTIs became available, including didanosine and zalcitabine. These drugs provided more treatment options and were proven to be more effective when taken in combination with AZT. However, it wasn't until protease inhibitors, a second class of drug, became available at the end of 1995, that antiretroviral therapy really began to make a difference.
Protease inhibitors form part of Highly Active Antiretroviral Therapy (HAART) - a combination of three or more different antiretroviral drugs, which significantly delays the onset of AIDS in HIV-positive people. Soon after the introduction of protease inhibitors, a third class of drug - NNRTIs - was approved. As a result of the increase in availability of different classes of drugs, between 1994 and 1998 there was a steep decline in the number of AIDS cases reported each year in the UK.
These days, there are five groups of antiretroviral drugs, and the number of drugs in each class continues to expand. Virtually all HIV-positive people in the UK who are receiving treatment are taking a combination of three or more of these drugs. Treatment is recommended for patients whose CD4 count has dropped below 350 cells (or 200 in acute, or primary, infection).³

How many people are receiving treatment and care for HIV in the UK?

Data published by the Health Protection Agency show that since the mid-to-late 1990s, the number of HIV-positive people accessing HIV-related care in the UK has substantially increased. Around 18,000 people were being treated in 1998; this number had more than tripled by 2007. The Heath Protection Agency also reported that of those HIV-positive people receiving antiretroviral therapy, 97% were taking a combination of three or more antiretroviral drugs, with the remained taking one or two.⁴ However, among those with a high level of immunosuppression - those with a CD4 count of <200 cells/mm3 - almost one-in-five were not receiving treatment.⁵
There are two main reasons why there has been a significant increase in the number of people receiving antiretroviral treatment since 1996. First, there has been a sharp decrease in HIV-related deaths since the introduction of antiretroviral therapy. HIV positive people are living longer and therefore need treatment for longer. Second, the number of new HIV diagnoses has risen, due to continuing transmission, an increase in testing, and immigration of HIV-infected individuals.⁶

Who should be able to receive free HIV/AIDS treatment in the UK?

The question of who should be able to receive free HIV/AIDS treatment in the UK has been a much debated public health issue. Since 2004, free HIV treatment has been available only to those legally living in the UK. This means that people living in the UK illegally, who have had their asylum or immigration claims rejected or have not applied for legal residence, have to pay to receive antiretroviral HIV treatment through the National Health Service.⁷
A High Court case in April 2008 however saw a judge declare that refusing free NHS treatment to failed asylum seekers was unlawful and in possible breach of human rights.⁸ By March 2009 though this ruling was overturned and the Court of Appeal ruled that failed asylum seekers should not be classified as ordinarily resident in the UK, meaning they are not entitled to free NHS treatment and care. However due to NHS rules, refused asylum seekers currently on treatment, or receiving medical monitoring whilst waiting to go on treatment, are still entitled to continue their treatment for free.⁹
In emergency situations, which, in the context of HIV may well mean a CD4 count of below 350, hospitals cannot refuse to provide treatment, even if the patient might be charged at a later stage.¹⁰
AVERT.org has more information about who is entitled to NHS treatment in the UK. For refugees or immigrants who are staying in the UK but don't have official permission to be in the country, The Refugee Council may be able to help with HIV treatment issues.

Treatment for HIV positive pregnant women in the UK

The rapid scale-up of antenatal HIV testing has meant that at least 9 in 10 HIV-infected pregnant women are diagnosed prior to delivery¹¹ and the appropriate treatment is given to reduce the risk of mother-to-child transmission. These preventative measures have ensured that the rate of mother-to-child transmission in the UK is very low - less than 5 percent in 2007, compared to 17% in 1998.¹²
Even though this treatment is available to all HIV positive pregnant women as it is considered 'immediately necessary treatment', the patient will still be charged afterwards if they are not entitled to free treatment within the UK.¹³

How to access treatment in the UK

People with HIV who are entitled to treatment in the UK may get support and treatment from their own doctor or from a specialist at an HIV clinic or a local Genitourinary Medicine (GUM) clinic.
For more information about how to register with a GP visit our page about NHS treatment in the UK.

The cost of antiretroviral treatment in the UK

A report in 2007 found that 13 percent of HIV clinicians in the study had decided not to prescribe specific HIV medications or tests due to financial constraints within their budgets.

The cost of treating someone with HIV in the UK is estimated at around £16,000 per year.¹⁴ This is thought to be very cost effective, when compared to the amount it would cost to treat someone suffering from an AIDS-related illness in hospital and Accident and Emergency departments.¹⁵
As new, improved drugs are becoming available, the cost of HAART is increasing. A growing number of people are requiring more expensive drugs as they become resistant to previous combinations. A report in 2007 found that 13 percent of HIV clinicians in the study had decided not to prescribe specific HIV medications or tests due to financial constraints within their budgets. Patients are therefore often offered drugs based on cost rather than suitability. Additionally, around 1 in 5 of the clinicians had discussed plans to restrict the prescribing of certain drugs due to their cost.¹⁶ If financial restraints force clinicians to be more selective about the medications they provide, it could become increasingly difficult for people who have become resistant to certain antiretroviral drugs to change their regimens.

'Health tourism'

There are concerns that HIV positive people from other countries have been migrating to the UK in order to access free antiretroviral treatment from the National Health Service. However there is a lack of evidence demonstrating to what extent 'health tourism' has actually occurred. One study showed that out of all the HIV positive participants, very few migrated to the UK primarily to access HIV treatment; it was only after spending some time within the UK that the participants first went to get tested for HIV.¹⁷ This is not the behaviour of 'health tourists' who are entering the country solely to access free treatment services. Other studies have pointed to the fact that accessing healthcare, specifically HIV healthcare, is not a motivating factor in migration decisions. Furthermore, migration patterns have not evolved with the distribution of the HIV pandemic, nor have they been affected by changes in the law that restrict certain classes of immigrants from accessing care.¹⁸
Nevertheless, the Government argues that 'health tourism' exists in the UK and many HIV positive people wait until they are very ill before arriving in the country and going straight to Accident and Emergency Departments to be treated.¹⁹

"The Government remains convinced that deliberate abuse of the NHS by overseas visitors, across a range of services, is not just a potential threat but a very real one and the Government must fulfil its responsibility to ensure that the NHS is protected for those who are entitled to receive it free of charge. That applies as much to HIV treatment as to any other hospital service." - Government response to the Health Select Committee's Third Report of Session 2004-2005.²⁰

Why do people still die of AIDS in the UK?

Despite the fact that HAART is now prolonging the lives of many HIV positive people, some are still dying of AIDS in the UK. In particular, drug resistance and late diagnosis have affected the survival rates among HIV positive people in the UK.

Drug resistance

When HIV replicates it often makes slight mistakes, so each new generation of HIV differs slightly from the one before. These tiny differences in the structure of HIV are called mutations. Some of these mutations can make the virus resistant to antiretroviral drugs. When this happens, the amount of HIV in the blood rises and the risk of the person becoming ill increases. Resistant viruses can be passed from one person to another. However, HIV that is resistant to one type of drug may not be resistant to another, so changing drug combinations can help in suppressing viral load.
Findings from the UK HIV Drug Resistance Database suggest that there have been recent declines in both the prevalence of transmitted HIV drug resistance (TDR) and the prevalence of drug resistant HIV in treatment-experienced individuals. ^{21 22}

• Decline in prevalence of transmitted HIV drug resistance in the UK. Testing HIV positive people who have had no previous exposure to antiretroviral therapy indicates the prevalence of TDR. The prevalence of TDR peaked between 2000 and 2002, when around 12 percent of treatment naïve individuals that were tested were resistant to any drug class. In 2006 this figure had fallen to 6.6 percent, rising slightly in 2007.²³ The general decline could be a result of the increase in testing among drug-naïve patients for resistant mutations. It could also be attributed to the fact that a large number of new HIV diagnoses in the UK are a result of HIV infection acquired in countries where antiretroviral therapy is not widely available and hence drug resistant HIV is not as prevalent.

• Decline in the prevalence of drug resistant HIV in treatment-experienced individuals in the UK. Since 2000 there has also been a decline in prevalence of drug resistant HIV in treatment-experienced individuals. In 1999, prevalence was over three-quarters but this had declined to 44% in 2007.²⁴ The British HIV Association (BHIVA) attributes the decline to the improved management of antiretroviral therapy and treatment failure.²⁵

Despite evidence of decline, the level of transmitted drug resistance and the number of HIV infected people with a drug resistant strain of HIV in the UK remain relatively high. This is not only complicating HIV therapy, but is also contributing to AIDS deaths. The BHIVA annual audit showed that in a survey of 133 clinical centres, of the 263 HIV-related deaths, eleven were due to multiple drug resistance and the reducing number of treatment options.²⁶

Late diagnosis

A person is diagnosed late with HIV if their CD4 count is low at diagnosis, making them more likely to develop an infection. When this happens, the person is less likely to respond to antiretroviral drugs than someone who is diagnosed when their CD4 count is high. Among Black Africans and Caribbean people, for example, those who are diagnosed late are 13 times more likely to die within a year than those diagnosed at a CD4 count above 200.²⁷
Late diagnosis is a major issue within the UK. In 2008, it was estimated that around a third of newly diagnosed, HIV infected adults were diagnosed late. The highest proportion of late diagnoses occurred among heterosexual men, with 44 percent of all diagnoses being late. Around 20 percent of HIV diagnoses among men who have sex with men were late, reflecting a greater awareness of the risk of HIV infection among this group.²⁸
In order to reduce the number of late diagnoses in the UK, individuals who believe that they are at risk of HIV infection need to be aware of the importance of testing early. Healthcare professionals also need to be more aware of the problem and need to offer HIV testing to anyone who may be at risk.

"People are dying because they are not being tested early enough. We need to be in a position where GPs are prepared to discuss HIV risks and offer HIV tests as a matter of course to people from at-risk communities" - Dr Fiona Burns, Centre for Sexual Health & HIV Research, University College London²⁹

Conclusion

Tablets of Isentress (raltegravir), an integrase inhibitor used in HIV treatment

Since the first antiretroviral drug was introduced, treatment in the UK has come a long way. The majority of HIV positive people are living longer lives and the number of people dying from AIDS has significantly decreased. The NHS provides a variety of free drug combinations for all of the UK's HIV positive legal residents, unlike many other countries.
However, there are still HIV positive people residing in the UK who are not getting treatment - often because they are unaware of their positive status. There is therefore a need for increased HIV testing to prevent late diagnoses and a need for greater awareness of issues such as drug resistance.

References

1. BHIVA (2006, December) 'BHIVA clinical audit report 2005-6'.
2. Pomerantz, R.J & Horn, D.L (2003, July) 'Twenty years of therapy for HIV-1 infection'. Nature Medicine, vol. 9, no. 7.
3. British HIV Association (2008), 'British HIV Association Guidelines for the Treatment of HIV-1 infected adults with antiretroviral therapy'
4. SOPHID, Centre for Infections, Health Protection Agency (2009) 'Numbers accessing HIV care: National Overview'.
5. HPA (2008), 'HIV in the United Kingdom'
6. Health Protection Agency (2006) 'A complex picture'.
7. The National Health Service (2004) 'Charges to overseas visitors (Amendment)' Regulations 2004: statutory instrument no. 614.
8. Guardian (2008, April 12th) 'Asylum seekers have right to full NHS care, high court rules, but government considers appeal'.
9. Aidsmap (2009, 30th March) 'Court of Appeal says refused asylum seekers not ordinary UK residents, therefore not entitled to free NHS care'.
10. Terrence Higgins Trust, 'Living with HIV: Healthcare: Immigration and healthcare'
11. The Health Protection Agency (2007) 'Testing times'. Accessed 4th April 2008.
12. HPA (2008), 'HIV in the United Kingdom'
13. The Department of Health (2009, April) 'Table of entitlement to NHS treatment - table correct as of April 2009'.
14. AIDS Treatment Update (2006, May) 'HIV treatment and care costs £16,000 a year', issue 156.
15. National AIDS Trust, Terrence Higgins Trust (200, September), 'Campaign for access to treatment and care for all'
16. Terrence Higgins Trust (2007, January) 'Disturbing symptoms 5'.
17. THT & NAT (2006, February) 'Note on access to HIV treatment for undocumented migrants and those refused leave to remain' [pdf]
18. NAT (2008), 'The Myth of Health Tourism'
19. Crown Copyright (2005) 'New developments in sexual health and HIV/AIDS policy: Government response to the Health Select Committee's Third Report of the Session 2004-2005'.
20. Crown Copyright (2005) 'New developments in sexual health and HIV/AIDS policy: Government response to the Health Select Committee's Third Report of the Session 2004-2005'.
21. The Health Protection Agency (2007) 'Testing times'. Accessed 4th April 2008.
22. UK Collaborative Group on HIV Drug Resistance (2009, October), 'UK HIV Drug Resistance Database 2009 Annual Report 2008/2009'
23. UK Collaborative Group on HIV Drug Resistance, 'UK HIV Drug Resistance Database - surveillance', accessed 14th September 2009
24. UK Collaborative Group on HIV Drug Resistance, 'UK HIV Drug Resistance Database - surveillance', accessed 14th September 2009
25. British HIV Association (2008), 'British HIV Association Guidelines for the Treatment of HIV-1 infected adults with antiretroviral therapy'
26. BHIVA (2006, December) 'BHIVA clinical audit report 2005-6'.
27. Health Protection Agency (2007) 'Testing times'
28. HPA (2009), 'HIV in the United Kingdom: 2009 report'
29. EurekAlert! (2007, 6th December) 'Doctors failing to diagnose HIV early in UK Africans'.