Dr Laura Waters is an HIV and sexual health consultant at the Mortimer Market clinic and the Boyz Doc. With World AIDS Day upon us, here she explains why some people continue to die of AIDS in the UK.
We hear a lot of positive news about HIV in the UK, and appropriately so. Treatments continue to improve, life expectancy is now normal for many people with HIV, the proportion who are undiagnosed continues to fall and effective HIV treatment means the risk of transmission is incredibly low indeed. However, that should not mask the fact that some people with HIV still get sick and die of HIV-related conditions – this article will explore some of the reasons why.
Although the percentage of people with undiagnosed HIV has gone down the actual number is fairly stable at around 18,000 – even if the undiagnosed numbers are unchanged, the proportion will go down as the number of people diagnosed and attending clinic goes up. If people are not diagnosed at an early stage of infection then they may not be tested until they get sick with an already damaged immune system. Some of those illnesses will be AIDS illnesses – AIDS conditions are basically a list of infections, cancers and other problems that tend to only affect people with a damaged immune system. Because there is a fairly steady number of people being diagnosed late then there is a steady number of AIDS diagnoses and AIDS deaths over recent years (albeit far fewer then the days before we had effective HIV treatments). Again, as a proportion of illnesses and deaths, AIDS conditions are declining; as more and more people with HIV are diagnosed, attending HIV clinics and taking treatment then more are reaching older age and developing the same ‘usual’ age-related conditions (like heart disease) as the general population.
People who present with an AIDS condition or a low immune system are called ‘late presenters’. Some people are more likely to present late than others: heterosexuals, people from outside London and older people are more likely to be diagnosed with HIV at a late stage. There are many reasons for being diagnosed late; two important ones are whether someone perceives themselves to be at risk – if they don’t they are unlikely to seek a test – and whether health care professionals offer a test.
Education and awareness raising (such as happens during National HIV Testing Week and on World AIDS Day) can be helpful in encouraging people to test and providing more opportunities to do so. Stigma remains a very important barrier to testing and this is where making testing routine (almost ALL pregnant women have an HIV test because the test is ROUTINE) and expanding testing options can help. Testing outside of sexual health services is increasing and some people may feel more comfortable testing in a community service, with their GP or at home. However someone tests, ensuring they have access to support, advice and prompt assessment in an HIV clinic is essential.
Studies of people who present late often show there were ‘missed opportunities’ to test for HIV and that, with hindsight, most people have had contact with doctors or other health workers with symptoms or risks that should have prompted the offer of an HIV test. Unfortunately, despite the publication of clear national guidelines on HIV testing in 2008, the recommendations are not followed routinely. Examples include offering an HIV test to people admitted to hospital or registering with a new General Practice if they live in an area where HIV is common (most of London!). Health workers worry about counselling for HIV tests and giving results but complex counselling is largely unnecessary, positive results can be managed by HIV services with experience in this. Making sure staff in outpatient and inpatient services know which conditions should trigger an HIV test is also crucial – there are lots of non-AIDS conditions that suggest HIV is more likely including severe or difficult to treat psoriasis, glandular fever symptoms and pneumonia.
Moving on from people who are tested late many people who develop an AIDS condition are already known to be HIV positive. A study a few years back at Chelsea & Westminster Hospital in London showed that 60% of the patients diagnosed with AIDS were already diagnosed with HIV, in fact they had been HIV positive for an average of 6 years. This means that for one reason or another they had stopped attending clinic and stopped, or never started, taking HIV drugs. Again, the reasons for this are complex and will differ from one person to the next, but fear, stigma, negative experiences with clinics or medication, social challenges and immigration issues can all contribute. Clinics can help by contacting people when they don’t attend, ensuring services are as flexible as possible and making sure patients have access to peer-support and community organisations.
Despite all this it is important to emphasise that for people with HIV who take treatment, have an undetectable viral load and a reasonable immune system have a NORMAL life expectancy compared with the general population. Ensuring people test and are able to access clinics if they test HIV positive means everyone with HIV can enjoy the benefits of effective treatment and the number of people diagnosed with AIDS will continue to decline.