Dr Ann Sullivan
Posted 27th Jul 2016
What is the biggest challenge concerning the control of HIV transmission in Europe today?
That would have to be undiagnosed and late diagnosed HIV, where people present with a CD4 count below 350mm3. Once people are diagnosed, transferred to care and on effective treatment, their viral loads can be suppressed and it is therefore easier to control HIV transmission. Also, not being offered the opportunity to test continues to be a problem.
In a minority of countries in Europe, there are systemic problems that mean access to testing and/or treatment is limited; and so some people may avoid or delay testing altogether because they think ‘What’s the point in getting tested? I won’t be able to get treatment anyway’.
The real challenge is a lack of testing that leads to late diagnosis.
Can you give us an overview of late HIV diagnosis across Europe?
Data in ECDC’s HIV surveillance report for 2014 suggests that nearly half (48%) of people diagnosed in the WHO European region are diagnosed late (1). There are a number of countries which don’t have data on late diagnosis - either because they don’t collect the data or because they don’t report it centrally. Although rates vary between countries and regions, rates of 40 to 50% are very high.
How would you describe current approaches to HIV testing across Europe?
I think for a long time targeted testing models have been used in Europe, with a focus on offering testing to people who are at high risk. In many countries, testing has been targeted at men who have sex with men (MSM), people who inject drugs and migrants from high prevalence countries.
The fact that there are many people still living with undiagnosed HIV or who continue to be diagnosed late suggests that targeted approaches alone have not been sufficient and/or that they have not been implemented in the optimal manner. Over the last few years, there has been a shift in approach and several projects have explored new strategies and places to offer HIV testing. This has included testing patients who present with indicator conditions (conditions often associated with HIV), such as hepatitis and lymphoma, as well as testing everybody once in certain settings, home sampling, self-testing, and community based testing.
Although providers have a history of providing outreach services, recent WHO guidelines have led to a real shift toward recommending community based testing. While outreach services have involved clinical staff taking clinical resources into a community setting, community based testing differs because it can be delivered in the community and by the community. This newer approach to community based testing, once set up, is likely to be as or more cost effective than healthcare professionals performing the tests in certain services.
An example is the Barcelona model, where HIV testing is delivered in non-governmental lesbian, gay, bisexual and transgender (LGBT) community organisations. The tests are performed by lay testers/peers who are not clinically trained but have very close links back into the local hospital, to ensure people who are diagnosed with HIV are linked into care.
From the patient perspective, what do you think are the main barriers to HIV testing, and how can these be overcome?
Well, there are structural barriers in some European countries, where patients in primary care are expected to pay some of the costs, which could present a financial barrier for some people. Another significant barrier is risk perception. People have to be aware of the risks associated with HIV transmission; perceive themselves to be at risk and then present for testing. Therefore, in some cases even if individuals are offered a test, they often will not accept if they don’t perceive themselves to be at risk. The only way to overcome this is through education and raising awareness within communities of what the risks are and what to do about it.
Also, stigma and discrimination can lead people to decline the offer of a test. This is because the stigma is not only about an HIV diagnosis but also about HIV testing. One thing that we have learnt recently is that people are more likely to have a test when they know others such as friends or family who have had a test. The more HIV and HIV testing are normalised, the easier it will be for others to present and accept the offer of a test.
I think having high profile people, for example sports personalities and musicians, publicly supporting or having HIV tests is a good way of normalising HIV testing and challenging some of the stigma associated with it. For example, I think it is great that in the UK Prince Harry recently had a public HIV test.
From the provider perspective, what do you think are the main barriers to HIV testing, and what can be done to overcome them?
From a provider point of view, the focus for breaking down barriers to testing is mostly on general medical settings and primary care. We would hope HIV and sexual health specialist settings would have high rates of HIV testing although I understand this may not be the case in some Eastern European countries, where it remains a challenge.
Some clinicians may lack knowledge about the need for more widespread HIV testing and they might not ask the pertinent questions needed to determine an individual’s level of risk. I think that some healthcare staff might assume (in most cases incorrectly) that their patient will be offended by the offer of an HIV test.
There are also often some structural and financial barriers to offering HIV testing, which can be difficult to overcome. The perceived opportunity cost and financial cost of offering HIV testing is often a concern. However, a clear economic argument can be made in favour of HIV testing and earlier access to treatment, as the costs of long-term healthcare associated with late diagnosis far outweigh the costs of more widespread testing.
Have you been involved in any clinical projects in the UK which aim to reduce late HIV diagnosis?
Yes. When the 2008 UK HIV testing guidelines were published they recommended that HIV testing should be offered in various settings, but for specific UK-related reasons this excluded emergency departments. We saw that as a challenge and showed, in a study of HIV Testing in Non-traditional Settings (HINTS), that testing in emergency departments is feasible, acceptable and effective at identifying HIV infection among people who present there for other reasons. We reported the findings to hospital clinical teams to raise awareness and encourage more widespread testing and HIV testing is now routinely offered in emergency departments, our Acute Medical Admissions Unit and a number of ‘indicator condition’ clinics.
A smaller piece of work we did locally to support our argument about the financial benefit of more widespread testing was to look at late diagnoses. We did a ‘look-back’ to identify missed opportunities to test for HIV at previous hospital attendances and calculate the cost of these episodes. This informed the business case to support the expanded HIV testing programme. This has now been linked to the OptTEST programme (see more below) and we hope to make the methodology and tools more widely available for others to apply locally. We were also able to show individual departments the proportion of people whose HIV diagnosis had been missed by them, and also the cost of missing the diagnoses. Furthermore, this helped with prioritising where to increase HIV testing. For example, we found that a number of people diagnosed late had visited the gastroenterology clinic with diarrhoea (a common symptom and complication of HIV infection) and were not being tested for HIV. Even without undertaking the above project, centres can prioritise indicator condition-guided testing using evidence produced by initiatives such as the HIV Indicator Diseases Across Europe Study (HIDES).
Could you tell us more about the HIDES study and any other European level projects, which aim to reduce late HIV diagnosis?
HIDES was a large pan-European study which provided the evidence base for recommending indicator condition-guided HIV testing, and demonstrated it is an effective strategy. A number of conditions have now been confirmed as ‘indicator conditions’. Of particular interest is the high prevalence of HIV seen in individuals presenting with infectious mononucleosis-like syndrome (also known as glandular fever). The symptoms are very similar to those of HIV seroconversion, and this is a diagnosis opportunity that should not be missed, given the extremely high infectiousness at this stage of the infection and the likely benefits of immediate treatment. Also, it is very likely that seroconversion will be followed by a long asymptomatic phase with no indications, therefore, it is important to test for HIV.
The other main project I am involved in is OptTEST, an EU (CHAFEA) funded pan-European effort to optimise and increase HIV testing and linkage to care. The main part of my work is exploring methods to increase HIV testing among people presenting with indicator conditions. The project is working with sites in seven EU countries to develop and pilot tools to support the implementation of indicator condition-guided HIV testing. It focuses on testing in patients presenting with hepatitis B and C, community acquired pneumonia and infectious mononucleosis-like syndrome. The tools will include a slide-deck, ‘how-to’ guides, e-learning and interactive resource modules - all translated and localised to the participating countries. We’re also running testing and quality improvement programmes and looking at interventions on a Plan-Do-Study-Act (PDSA) cycle level. We are learning from our pilot countries and at the end of the OptTEST programme, in the autumn of 2017, we will hopefully be able to invite other countries to join in and provide their own information to share with others. We really want to share our learning, and all this will be freely accessible.
Can you share any practical examples of things you’ve learned through OptTEST so far and which might be helpful for others?
In Estonia, for example, we are working with primary care and started by looking at the three indicator conditions above. However, based on feedback from the primary care pilot sites, we’ve expanded this to the ten indicator conditions included in the Estonian HIV testing guidelines, as the clinicians found the restriction was impacting on their performance because patients will present with many conditions.
In Spain, one of our OptTEST colleagues has developed a short questionnaire for all patients in primary care to fill out before they see the doctor. It asks the patient to select any symptoms or conditions they have and then, based on their responses, they are advised to initiate a discussion with their doctor about an HIV test. Really it’s initiating patient self-management, and beginning to address issues such as clinical capacity and opportunity costs.
How optimistic do you feel about the future of HIV testing in Europe?
Overall, I’m more optimistic now that the strategic thinking is that many more people should be offered a test and in many more settings. We are doing more indicator condition and community based testing, which is good. It will take time, because it’s a complete shift but it’s a step in the right direction. I think some areas in Eastern Europe will require more support to expand the availability of testing services.
What key message would you like to share about reducing late HIV diagnosis, and designing and implementing effective HIV testing strategies?
We need to recognise that no one strategy will work everywhere. People need to be flexible in learning different things from different approaches, applying it to their epidemic, their populations’ needs and localising the interventions.
All strategies must have a monitoring and evaluation component and programmes need to be continually reviewed and adapted as required to maximise their effectiveness and use of resources.
Close attention must also be given to transfer all individuals diagnosed with HIV to effective treatment and care. There should be clear formal written pathways agreed by all stakeholders; this is of increasing importance with the growing diversification of testers and settings.
As a final point, I would say almost universally that indicator condition-guided testing, with adequate monitoring and evaluation, is likely to be an effective strategy. It is opportunistic (patients are often already having a blood test done), pre-test discussion time can be minimised and the opportunity cost of spending time collecting samples for HIV testing alone is reduced. It is a cost-effective way to identify undiagnosed HIV infection in all population groups, whether at high risk or not, and can complement approaches targeting those most at risk. Indicator condition-guided testing is effective and it wins on all levels.
(1) European Centre for Disease Prevention and Control, WHO Regional Office for Europe. HIV/AIDS surveillance in Europe 2014 (Table14) Stockholm: ECDC; 2015.
The eFeature interview was conducted by Melvina Woode Owusu on behalf of MEDFASH.
The content of all eFeatures represents the views and opinions of the authors. MEDFASH does not necessarily share or endorse the views expressed within them.