Since the first HIV test was licensed in 1985 there has been a constant tug of war between those who advocate the widest possible use of HIV testing, and those who argue that testing throws up a raft of ethical issues that need to be considered before testing can be expanded.
In an effort to increase access to and uptake of HIV testing, there has been growing support for implementation of provider-initiated testing and counselling (PITC). At last month's International AIDS Society conference in Sydney the ethical debates were reviewed once more during a symposium on HIV testing.
Kevin De Cock, director of the WHO HIV/AIDS department, opened the session with an overview of new WHO/UNAIDS guidance on this approach.
Globally, knowledge of HIV status is low and the consequences of this can be measured in failed prevention, reduced treatment coverage, disease and death. In May 2007, WHO and UNAIDS issued new and detailed guidance on PITC within healthcare facilities in as part of HIV service scale-up.
The guidance states HIV testing and counselling should be recommended to patients whose clinical presentation could result from underlying HIV infection and that this recommendation for testing should ordinarily lead to the test being performed unless the patient declines. In areas with generalised epidemics, HIV testing should be recommended to all persons attending healthcare settings, irrespective of the reason for consultation. For concentrated epidemics, targeted testing is advised with priority going to those who appear symptomatic from HIV or children born to infected mothers.
If initiating PITC, De Cock suggested that testing could be systematically recommended in settings where HIV-infected persons are known to be disproportionately represented, including STI clinics and services for injecting drug users.
To ensure that testing is not coercive, the guidance stated that HIV testing should not be conducted against patients’ will, without their knowledge or without linkage to appropriate services.
While the new guidance needs careful adaptation to local conditions to ensure the best interest of each patient, De Cock stressed that “the benefits of not adopting this guidance, perhaps to prevent or minimise discrimination and stigma, must be weighed against the unforgiving outcomes of undiagnosed progressive HIV disease and preventable transmission.”
He concluded that the guidance offered balance and the opportunity to normalise HIV and its management in health care settings but that WHO and UNAIDS also strongly endorse expansion of client-initiated HIV testing and counselling which should not be portrayed as conflicting.
US experience of provider initiated testing and counselling
Bernard Branson, Associate Director for Laboratory Diagnostics in the Division of HIV/AIDS Prevention at the Centers for Disease Control in the United States, used experience of implementing similar recommendations (the US Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Health-Care Settings, 2006) to discuss lessons learned.
Their guidance recommends opt-out HIV screening (where no separate signed informed consent is needed) in US healthcare settings, for all persons aged 13-64, regardless of risk.
They also indicate that prevention counselling in conjunction with HIV screening in healthcare settings is not required and that the circumstances of the patient rather than the issuance of the test that is an indication for prevention counselling.
Following release of the guidance, San Francisco Public Health changed their requirements so that a separate consent was no longer required - HIV testing was added to the regular lab requisition. Branson stated that an increase from a mean of 20.6 positive tests per month before the change to 30.6 HIV-positive tests after the change provided some evidence of a benefit.
In Cook County Hospital in Chicago, routine screening found 2.5% of the people coming to the emergency department for reasons other than HIV were HIV-infected. Provider referred patients were also tested here, as well as routine screening, and while the acceptance of testing was very high among provider referred patients (95% compared to 58% screened routinely), Branson noted that these patients were much sicker (71% needed to be admitted to the hospital compared to 54% among those screened routinely).
Branson then compared data from hospitals using HIV screening programmes in emergency departments. In Los Angeles and New York, it was a counsellor-based system, where counsellors offered and performed rapid HIV tests. The alternative was in Oakland where a triage nurse offered the test and the emergency department staff disclosed the test results.
Testing was offered, to just 1,500 patients in the counsellor-based models, compared to 31,000 patients in the routine model. The routine model also identified nearly four times as many HIV-infected individuals, despite consistent prevalence in all environments.
When asked if they were satisfied with the routine testing, of those who were positive, 100% said that they were and 96% said that they felt the result disclosure was private (57 out of 65 completed a survey).
In a survey at George Washington University Hospital, conducted between September and December 2006, 73% of 680 patients tested for HIV either agreed or strongly agreed that the emergency department was a good place to perform HIV testing.
Branson suggested that the data showed that streamlined programmes saw more patients tested, more HIV infections diagnosed, and most patients approving of HIV screening.
Human rights
A human rights perspective came from Justice Michael Kirby, of the Australian High Court who argued that although there is a need to increase HIV testing, we need to keep the rights of those being tested in mind. He felt a key driver in increasing uptake of testing was reducing the ignorance, xenophobia and legal barriers that continue to affect people living with HIV.
While emphasising Australia’s success in this regard, with enacted laws against discrimination, and condom promotion in schools, he also highlighted the capacity of abstinence-based programmes to devour huge funds ineffectively.
He felt that testing without attacking the causes of stigma could subject those found HIV positive to a double burden. At a time when criminalisation of HIV transmission is on the rise, PITC could also expose those tested to criminal liability.
He noted that measures which depart from the fundamental principles of international human rights law must not be accepted and that embracing “weasel words” and “ambiguous text” could lead to endorsement of mandatory testing of highly vulnerable people, rather than PITC, with patients being thrust into a “world of stigma, fear and exclusion.”
He expressed a need for the proponents of expanded screening to “introduce any provider initiated screening for HIV with full patient participation and respect for the patient’s fundamental human dignity and human rights.”
HIV tests a `double-edged` sword, says advocate
However, Promise Mthembu, of the International Community of Women Living with HIV and AIDS, South Africa, showed that not all patients agreed. When presenting the opinion of women living with HIV, she felt that PITC could compromise the rights of individuals and contribute to stigma. She agrees that testing is important in allowing people access to care and support, but only when it is an individual’s choice to take the test.
In her view, opt-out testing ignores the fact that there is an imbalance between the service provider and the service user. Through her work with the Gender AIDS Forum, she recognises that many HIV-positive women see healthcare provision centres as places of powerlessness. She questioned whether healthcare workers provide unbiased advice to those they presume ignorant of the issues.
“It’s also difficult for people not to take the advice of the healthcare workers, because they risk not accessing services or being stigmatised,” she said.
With access to treatment in Southern Africa still being limited, she expressed concerned about increased spending on testing.
“They say that it’s going to expand access to care, treatment and support,” she said. “We still see AIDS deaths at alarming numbers, and these are people who have tested more than a decade ago. They are not dying because they were never tested, they died because they do not have access to adequate treatment and care, they died on waiting lists.”
While HIV tests can lead to better outcomes for patient, Mthembu described them as a ‘double-edged sword’. She urged healthcare providers to recognise that patients have issues, concerns and priorities and should be able to assess what they need at a particular time.
She asked why the global response to HIV and AIDS has been ignoring the destructive contributions of HIV testing, like the increase in a woman’s vulnerability to violence following a positive result.
She called upon WHO and the advocates for expanded HIV testing to “live up to the agreements of human rights in health. We are concerned that the hunger for statistics and numbers is compromising the rights in this area, and we call for rights first please. And we call on WHO to document the rights lost and bargained away in HIV testing settings.”
Evidence suggests that in some settings, these rights may not be fully understood. Sheri Weiser, Assistant Professor of Medicine at the Center for AIDS Prevention Studies, San Francisco, reviewed PITC in Botswana.
Botswana’s experience of provider-initiated testing and counselling
Botswana is a high-prevalence country, and was the first in Africa to introduce a national policy of provider initiated testing. Key features of Botswana’s policy include the right to decline the test, shortened pre-test information sessions and a stated goal of informed consent.
In 2004, a cross sectional survey of almost 1,300 clients found that 81% said they were very much or extremely in favour of routine testing, and 8% said they were somewhat in favour of the policy (15% of participants had tested by routine testing).
However, Weiser noted the alarming finding that while 90% that tested said they received both pre and post-test counselling and returned to get their test results, two-thirds of participants said that they were unable to refuse the test. This included routine testing and voluntary counselling and testing (VCT).
Approximately 5% that tested by either strategy said they experienced a breach of confidentiality at the testing sites but few participants reported partner violence related to testing. Overall there were no substantial differences in negative testing outcomes between VCT and routine testing.
When asked directly about their attitudes toward routine testing, the majority believed that the policy would increase access to both testing and treatment and would decrease both discrimination towards people living in HIV and violence towards women. However, 43% thought that this policy would cause people to avoid seeking medical care for fear of testing, and 14% thought that this policy could, in fact, increase violence towards women.
Of those that didn’t test, some of the barriers to HIV testing were being afraid to know HIV status, that clients had no reason to believe they were infected and that a positive test would mean they would need to change their sexual partner. Correlates of testing were higher level of education, more frequent visits to medical practitioners, and being female.
Weiser pointed out that the survey was conducted in the early days of PITC in Botswana and since then, 2006 data had found persistent support for the policy (94% in favour). In addition, a higher proportion of tests were now through routine testing.
The success of this policy was shown by a decreased proportion of people testing positive with CD4 counts less than 100 cells/mm3 (49% in 2003 to 34% in early 2006). Assessment of visits to government health facilities also suggests that people don’t seem to be avoiding clinics for fear of testing.
Such testing programmes will undoubtedly carry concerns and without definitive data, the impacts of such policy will remain unknown. In order for success in decreasing undiagnosed infection, Weiser stressed that monitoring these programmes will be an important step going forward.