An international meeting of clinicians, patient advocates and policy makers has endorsed plans to promote earlier diagnosis of HIV infection throughout Europe, in order to reduce the numbers who are still diagnosed with AIDS or die from it in Europe.
The HIV in Europe 2007 conference was convened by the Copenhagen University AIDS Programme, WHO Europe, AIDS Action Europe, the European AIDS Clinical Society, the European AIDS Treatment Group and numerous other groups involved in HIV care and advocacy in the EU.
The meeting’s Call for Action, endorsed by around 100 organisations present at the two-day meeting in Brussels earlier this week, urges all key stakeholders involved in HIV care to:
- Acknowledge that earlier diagnosis and care is urgently needed to improve the lives of people living with HIV and reduce transmission
- Develop more precise estimates – size, characteristics, etc – of the undiagnosed population
- Communicate the benefits of earlier care and reduce perceived barriers to testing
- Implement evidence-based testing and treatment guidelines in every country
- Commit the necessary political, financial and human resources for their timely implementation.
Why is there a need for earlier HIV diagnosis in Europe?
Around 35% of people with HIV in the European Union are unaware of their HIV status – approximately 250,000 people – but across the wider European region that includes the Russian Federation and Ukraine, the number undiagnosed rises to 1.2 million.
Taking data from UNAIDS and national surveys, Professor Andrew Phillips and colleagues at University College and Royal Free Medical School, London, modelled the ongoing effects of late diagnosis in Europe.
In Western Europe, estimates Professor Phillips, 16,000 people are undiagnosed and in need of treatment now, because they have a CD4 cell count below 200. Ten thousand people are likely to die by 2009 due to late diagnosis, and throughout the wider European region – including the Russian Federation and Ukraine – 120,000 could die by 2009 if they are not diagnosed with HIV. If all these people could be diagnosed and receive treatment according to European guidelines, at least 90,000 lives could be saved, the model estimates.
According to Prof. Andrew Phillips, earlier diagnosis and treatment could also have substantial effects on the rate of new infections
Late presentation for treatment – that is, HIV diagnosis late in the course of infection, when treatment should start without delay - varies across Europe and by risk group.
- Twenty-two per cent of gay men in the UK are still diagnosed late, compared with 47% of heterosexual men (predominantly African men).
- A recent large Italian study found a 37% rate of late diagnosis, defined as the onset of an AIDS-defining illness less than six months after an HIV diagnosis, and similar rates of late diagnosis, however it is defined, have been found in other western European countries.
- In France the proportion who start late – 35% - did not change between 1997 and 2005, and survival among late presenters hasn’t improved either, despite a growing range of drugs to treat HIV infection.
These figures become all the more worrying, experts agree, because new information published over the past year has made it clear that HIV treatment needs to start earlier than current guidelines recommend in order to produce the best results.
Current UK guidelines (due to be updated in early 2008) recommend that all individuals should start treatment before their CD4 cell count falls below 200 cells, but recently issued guidelines from the European AIDS Clinical Society recommend treatment for all patients with a CD4 cell count below 350.
If that threshold was implemented in the UK, the number of people diagnosed late would rise from 33% to 57%.
Barriers to earlier HIV diagnosis
Why is late diagnosis such a problem in the best-funded health systems in the world, when HIV treatment is highly effective and becoming so much easier to tolerate?
One reason is that people perceive HIV infection as a disease affecting only those with many sexual partners, according to Prof. Christine Katlama, and don’t see one or two sexual partners each year as posing much of a risk. But over ten to twenty years, the number mounts up, she said, providing more opportunities for infection.
For many heterosexuals, the problem is that they have never considered themselves to be at risk, but for gay men and Africans from countries seriously affected by AIDS, the reasons for not testing may be to do with denial, and lack of knowledge about the availability of effective treatment.
For Africans the barriers to testing are especially high. “If you’re relying on a small close-knit community for all kinds of emotional and financial support, fear of being cast out from that community may be enough to prevent you from testing,” said Ibidun Fakoya, a researcher from London’s Royal Free Hospital.
Other barriers commonly cited by migrants across Europe are lack of entitlement to free health care, together with confusion about what health care they might be entitled to. Concern about the confidentiality of test results is also widespread.
Opt out
For many, the major barrier to early diagnosis is simply never being offered the option of an HIV test. In the UK for example, individuals who don’t give blood, have a baby or attend an STI clinic may never be offered an HIV test even if they have a high risk of HIV exposure.
In the United States public health officials are trying to improve the rate of HIV diagnosis by routinely testing all adults at least once, predominantly through primary care but also through routine testing in emergency rooms and upon any admission to hospital. People with high risk behaviour – including all gay men – are being encouraged to test annually.
But in Europe there is widespread doubt that such an approach would be either cost-effective or achievable. Instead European HIV experts are trying to agree on a list of indicator conditions that should lead to HIV testing in the general population, including sexually transmitted infections, tuberculosis, lymphoma, oral thrush, hepatitis B or C, lymphadenopathy and any AIDS-defining condition.
The move is partly triggered by a widespread awareness that people diagnosed late with HIV have often been seen by general practitioners with health problems that might give rise to suspicion.
However, the broader spectrum of complaints that often bedevil people with milder immunosuppression, such as bacterial pneumonia, shingles, dermatitis and other skin problems haven’t made it onto the list of indicator diseases because HIV specialists do not know how frequently they occur in HIV-positive people, nor the likelihood that a person presenting with one of these conditions will be HIV-positive.
Widespread testing does take place in Eastern Europe, often without obtaining consent. Every year 25 million people are estimated to be tested, according to Gennady Roshchupkin of the International Harm Reduction Network, but only 14% of injecting drug users have been tested. “When it comes to opt in or opt out, our countries have no concept of opt-in testing,” he told the meeting.
Major barriers to learning one’s HIV status still exist in the form of discrimination against people with HIV, and pose major disincentives to testing, especially for migrant communities and in Eastern Europe.
However the increasing use of the criminal law to prosecute people for reckless transmission of HIV also drew attention at the meeting, and participants agreed that legal sanctions against transmission were harming HIV prevention efforts and reinforcing reluctance to test.