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HIV Treatment in the UK
The current situation
Since antiretroviral 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-related illnesses has dramatically decreased, and HIV is now generally thought of as a chronic disease. Despite the introduction of free antiretroviral treatment, there are still people dying from AIDS-related illnesses in the UK. In the UK, late diagnosis can increase the risk of death ten-fold; 47 percent of HIV diagnoses in 2012 were late.1
Introduction to HIV treatment 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.2The situation started to improve during the middle of the 1980s when it was discovered that people with HIV and 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.
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.
UK treatment recommendations
These days, there are five groups of antiretroviral drugs. 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/mm3.3 Treatment is also increasingly recommended to some people living with HIV as a method of preventing onwards transmission to others; see our treatment as prevention page for more information.
The number of people living with 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 quadroupled by 2012 to 77,610. Among those with advanced HIV infection (a CD4 count of less than 350 cells/mm3) almost one-in-ten were not receiving treatment, but this was mainly because they had only recently been diagnosed.4
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.5
Eligibility for free HIV and AIDS treatment in the UK
In 2004, free HIV treatment was made available only to those legally living in the UK. This meant that short-term overseas visitors and people living in the UK illegally (such as failed asylum seekers or people who had not applied for legal residence), had 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 residents in the UK, meaning they were not entitled to free NHS treatment and care.9
The 2012 change in policy was largely made because of the public health benefits of ensuring universal access to HIV treatment. Adherence to HIV treatment (or antiretrovirals) reduces the risk of HIV transmission and therefore prevents new HIV infections.10 It is hoped that the opportunity to access free HIV treatment will make people more likely to get tested and know their status.
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 do not have official permission to be in the country, The Refugee Council may be able to help with any issues around treating other conditions related to HIV that the NHS can charge for, such as opportunistic infections.
Treatment for HIV positive pregnant women in the UK
The rapid scale-up of antenatal HIV testing has meant that 98 percent of pregnant women are screened for HIV prior to delivery. In 2012, just 0.19 percent of pregnant women tested HIV-positive; the appropriate treatment is then given to reduce the risk of mother-to-child transmission.11 12 These preventative measures have ensured that the rate of mother-to-child transmission in the UK is very low - only 2 percent of children born to HIV-positive mothers were infected between 2005 and 2011, compared to 17 percent in 1998.13 14 The rate is much lower if undiagnosed women are not taken into account.
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.15
How to access treatment in the UK
People living with HIV in need of treatment are recommended to receive care from a specialist at an HIV clinic or a local Genitourinary Medicine (GUM) clinic. The British HIV Association also strongly encourages the involvement of a GP in HIV care.16
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 £18,000 per year, although this varies depending on the type and number of drugs taken and the stage of HIV infection.17 As new, improved drugs are becoming available, the cost of antiretroviral treatment is increasing. Prior to 2008, a growing number of people required more expensive drugs as they become resistant to previous combinations, but this has stabilised since, helping to steady the cost of antiretroviral treatment.18
In 2011, cost saving measures led to a change in first-line treatment regimen for London patients starting treatment for the first time and those who switch to a second-line protease inhibitor based regimen.19 20 Those already on a regimen that includes a protease inhibitor that is not atazanavir/ritonavir may be asked to switch to atazanavir. According to the change, Kivexa (a combination of the drugs abacavir and 3TC) will replace tenofovir and FTC for the years 2011-2013 in order to save up to £9 million in London hospitals. The change caused some concern as abacavir has been linked to heart disease in a number of studies,21 22 23 although the relationship has been disputed by its manufacturer, by the FDA and a study in America involving 5,056 patients.24 25 26 However, as a result of the dispute, some patients, (for example those with a very high viral load or with a high heart attack risk) will not be placed on a drug regimen containing abacavir.
As 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.
Why do people still die of AIDS in the UK?
Despite the fact that antiretroviral treatment is now prolonging the lives of many HIV positive people, some are still dying of AIDS-related illnesses in the UK. Drug resistance has affected the survival rates among HIV-positive people in the UK, and late diagnosis is believed to be the primary cause of 81 percent of AIDS-related deaths over the past decade.27
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 (this is called transmitted drug resistance). 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 resistance in those already taking treatment.28 29
- Decline in prevalence of transmitted HIV drug resistance in the UK. Testing HIV positive people who have had no previous exposure to antiretroviral therapy can determine the prevalence of TDR. The prevalence of TDR peaked between 2000 and 2002, when around 12 percent of treatment nieve individuals (those who had never taken any HIV treatment) tested were resistant to any drug class. In 2006 this figure had fallen to 6.6 percent, rising slightly in 2007.30 The general decline could be a result of the increase in testing among drug-nieve 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. Since 2008, TDR has remained fairly stable.31
- 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 (those who have previously taken or are currently on HIV antiretroviral treatment). In 1999, prevalence was over three-quarters but this had declined to 44 percent in 2007.32The British HIV Association (BHIVA) attributes the decline to the improved management of antiretroviral therapy and treatment failure.33
A person is diagnosed late with HIV if their CD4 count is low (350 cells/mm3) 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.
Late diagnosis is a major issue within the UK. In 2012, just under half of newly diagnosed, HIV infected adults were diagnosed late. The highest proportion of late diagnoses occurred among heterosexual men, with 65 percent of all diagnoses being late. Around 34 percent of HIV diagnoses among men who have sex with men were late, perhaps reflecting a greater awareness of the risk of HIV infection among this group.34
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 London35
There are also a substantial minority of people who, despite diagnosis, do not begin treatment when their CD4 count is below 350. One study found that 8.9 percent of patients with a low CD4 count remained untreated.36Injecting drug users and those of an unknown ethnicity were found to be less likely to commence HAART in the UK.
Since the first antiretroviral drug was introduced in 1987, HIV 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 infected 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.
- 1. Public Health England (2013) 'HIV in the United Kingdom: 2013 report'
- 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 (2012) 'British HIV Association guidelines for the treatment of HIV-1 infected adults with antiretroviral therapy 2012'
- 4. Public Health England (2013) 'HIV in the United Kingdom: 2013 report'
- 5. Health Protection Agency (2006) 'A complex picture'.
- 6. Department of Health (2012, 1st October) 'HIV Treatment for Overseas Visitors in England'
- 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. Department of Health (2012, 1st October) 'HIV Treatment for Overseas Visitors in England'
- 11. Public Health England (2013) 'HIV in the United Kingdom: 2013 report'
- 12. The Health Protection Agency (2007) 'Testing times'. Accessed 4th April 2008.
- 13. Public Health England (2013) 'HIV in the United Kingdom: 2013 report'
- 14. HPA (2008), 'HIV in the United Kingdom'
- 15. The Department of Health (2009, April) 'Table of entitlement to NHS treatment - table correct as of April 2009'.
- 16. BHIVA (2010) 'BHIVA position statement: The future role of primary and community care in HIV'
- 17. Aidsmap (2011) 'Annual UK HIV treatment and care costs could reach £750 million by 2013'
- 18. Public Health England (2013) 'HIV in the United Kingdom: 2013 report'
- 19. Aidsmap (2011, April) 'HIV drug prescribing in London to change from this month'
- 20. HIV i-base (2011, April) 'London HIV Consortium issues new guidelines for ARV prescribing'
- 21. D:A:D Study Group (26 April 2008) “Use of nucleoside reverse transcriptase inhibitors and risk of myocardial infarction in HIV-infected patients enrolled in the D:A:D study: a multi-cohort collaboration”, The Lancet 371(9622)
- 22. The SMART/INSIGHT and the D:A:D Study Groups (12 September 2008) “Use of nucleoside reverse transcriptase inhibitors and risk of myocardial infarction in HIV-infected patients” AIDS 22(14)
- 23. Choi, Andy I (2011) 'Cardiovascular risks associated with abacavir and tenofovir exposure in HIV-infected persons' AIDS
- 24. GSK (2008, March 27th) 'GlaxoSmithKline statement in response to D:A:D Data on Abacavir'
- 25. Ribaudo, Heather J. (2011) 'No Risk of Myocardial Infarction Associated With Initial Antiretroviral Treatment Containing Abacavir: Short and Long-Term Results from ACTG A5001/ALLRT' Clinical Infectious Diseases 52(7):929–940
- 26. FDA (2011, March) 'FDA Drug Safety Communication: Safety Review update of Abacavir and possible increased risk of heart attack'
- 27. Public Health England (2013) 'HIV in the United Kingdom: 2013 report'
- 28. The Health Protection Agency (2007) 'Testing times'. Accessed 4th April 2008.
- 29. UK Collaborative Group on HIV Drug Resistance (2009, October), 'UK HIV Drug Resistance Database 2009 Annual Report 2008/2009'
- 30. UK Collaborative Group on HIV Drug Resistance, 'UK HIV Drug Resistance Database - surveillance', accessed 14th September 2009
- 31. Public Health England (2013) 'HIV in the United Kingdom: 2013 report'
- 32. UK Collaborative Group on HIV Drug Resistance, 'UK HIV Drug Resistance Database - surveillance', accessed 14th September 2009
- 33. British HIV Association (2008), 'British HIV Association Guidelines for the Treatment of HIV-1 infected adults with antiretroviral therapy'
- 34. Public Health England (2013) 'HIV in the United Kingdom: 2013 report'
- 35. EurekAlert! (2007, 6th December) 'Doctors failing to diagnose HIV early in UK Africans'.
- 36. Kober C. et al (2012)) ‘Non-uptake of highly active antiretroviral therapy among patients with a CD4 count < 350 cells/μL in the UK’ HIV Medicine 13 (73-78)