Developing the HIV continuum of care for Europe: interview with Anastasia Pharris of the ECDC
Stichting HIV Monitoring shares both data and expertise with the European Centre for Disease Prevention and Control (ECDC) in Stockholm. Epidemiological data collected by SHM are reported by the RIVM to the ECDC via the European surveillance system, TESSy. SHM has also been closely involved in developing the ECDC HIV modelling tool and is part of the ECDC project led by Kholoud Porter at UCL to improve the continuum of HIV care in the EU/EEA. One of the people closely involved in this work at ECDC is HIV expert Anastasia Pharris. We spoke to Anastasia about her work on HIV surveillance within the countries of the European Union and the HIV continuum of care project.
Could you briefly outline the work you do at ECDC as HIV expert?
I am responsible for coordinating HIV surveillance activities at ECDC. For this, I collaborate closely with HIV epidemiologists in all of the 31 countries of the European Union and European Economic Area. They submit data on new HIV diagnoses on an annual basis to the European database, which I analyse in order to provide a picture of the European epidemic. I liaise with a counterpart at the WHO Regional Office for Europe for the European and Central Asian countries beyond the EU/EEA, and together we publish an annual report that covers the 53 countries of the wider region. I also support data and scientific requests to ECDC in the area of HIV, from the European Parliament, the European Commission, member states, journalists and members of the public. I also work on ad hoc projects in collaboration with external experts, such as a projects on HIV modelling and the HIV continuum of care; Stichting HIV Monitoring coordinates the former and contributes to the latter project.
What tools/data do you have available to monitor and chart the HIV epidemic in Europe?
Data on persons newly diagnosed with HIV in the EU are reported through routine surveillance systems. These provide a great deal of information, particularly if characteristics such as route of transmission, country of birth and CD4 cell count at diagnosis are included in the report. From this, we can understand which groups are most at risk, how long they have been infected, and use this information to re-direct or strengthen prevention efforts. The HIV Modelling tool, which was built in collaboration with SHM, has provided countries in Europe and beyond with the ability to use the data that they routinely collect on new HIV diagnoses to model HIV incidence, prevalence, the number of people living with undiagnosed HIV, and median time from infection to diagnosis.
What are the main challenges you face in terms of collecting data?
HIV data in Europe, taken as a whole, are probably of the highest standard globally. However, some countries still have high proportions of incomplete data on route of HIV transmission and country of birth, which we consider to be important variables. There is also a delay in reporting, particularly in some countries, which makes it appear as if there is a decline in new HIV diagnoses in the most recent calendar year. We are able to adjust for this, but sometimes not completely. This can provide an incorrect message to policy makers with regard to progress in reducing new diagnoses when, in fact, that is not the case.
The UNAIDS’ 90-90-90 target for HIV care by 2020 means that many countries, and in some cases cities, are drawing up continua of care. How valuable and reliable are these continua? And how does ECDC help countries in estimating the continua.
The current standard of these data are fairly good in European countries, but improvements are possible. For the first ‘90’, we recommend the use of a modelled estimate and our ECDC HIV Modelling tool supports this. Countries are interested in using the tool to be able to estimate the first 90 and the tool’s ease-of-use allows ‘regular’ epidemiologists to do this, without needing to have a mathematical modeler on staff. Many smaller or less well-resourced countries in Europe do not have modelling resources so this freely available tool is really helpful to them. Additional challenges on the 90-90-90 data is that some countries’ systems are unable to easily identify when cases diagnosed with HIV have been lost to follow up, left the country or have died. We are working with countries to develop methods to adjust the data for these types of uncertainty.
Together with colleagues from other countries, you recently published an article calling for the use of standardised definitions for monitoring the continuum of HIV care in Europe. Could you explain why this is necessary and what the issues are in Europe?
This paper is the result of a project to develop standard definitions for a four-point HIV continuum of care that are suggested for use in Europe. There was previously a lot of diversity with regard to how the continuum was being measured and it was impossible to compare across countries. This project has helped to bring consensus regarding which measures to use and it is now being applied in countries across Europe.
Are you exploring any other methods for monitoring HIV in Europe or developing other tools to assist you in your work?
We are currently in the final stages of developing a tool to support countries to adjust their HIV surveillance data for missing variables, using imputation methods, as well as accounting for reporting delay. This tool should be harmonised with the ECDC HIV Modelling tool to help prepare the data for modelling, so that it is more complete and thus, the results more accurate. In 2018-2019, we plan to review the mortality data that we are collecting to identify whether we can improve our estimates of AIDS-related deaths through adjustments.
Numbers of HIV diagnoses in the Netherlands are decreasing and retention in care, treatment, and levels of viral suppression are high. What are the major challenges in Europe?
In the EU/EEA countries of Europe, the largest challenge is the long lag between HIV infection and diagnosis. Most people living with HIV in the EU/EEA do quite well once they are diagnosed and they are linked to care, offered treatment and then achieve viral suppression. We recently estimated that, on average, it takes about 3 years for someone infected with HIV in the EU/EEA to be diagnosed, and even longer in some parts of the EU. This suggests problems with either people accessing testing services or poor self perception of risk. We need to improve the manner in which we are offering and encouraging HIV testing to those most at risk and to diversify, de-stigmatise, and mainstream the manner in which testing services are delivered.
Outside of the EU, in the countries of Eastern Europe and Central Asia, in addition to a diagnosis delay, we see that large proportions of people who have been diagnosed are not offered treatment until they reach more advanced stages of HIV infection. This is because national guidelines may not yet have been updated to the standards of immediate offer of treatment recommended by the European AIDS Clinical Society and WHO.