Angelina Namiba reports from Geneva
On the 8th and 9th of April 2013, my colleague Ed Ngoksin, key populations officer for the Global Network of People living with HIV (GNP+) , and I attended a meeting on the implications of self HIV testing scale up. The meeting was convened by WHO , The Liverpool School of and Tropical Medicine and UNAIDS . It was hosted by the Brocher Foundation in Geneva.
The Foundation is right next to the banks of Lake Geneva, and you could just about make out the snowy Alps in the background! Had it not been such a serious meeting, I might have been tempted to break into one of the Sound of Music classics! However, as I attended the meeting with my GNP+ and Positively UK advocate hat on, I had to maintain some sense of decorum!
The meeting’s aims were to bring together international experts in HIV self-testing to consider the legal, ethical, gender and human rights implications of HIV self –testing.
The specific objectives of the meeting were to:
- Review existing, on-going and planned research on public health approaches to self testing and to identify research gaps
- Engage international experts in the debate around HIV self-testing
- Examine and discuss programmatic opportunities and challenges for scale up of self testing, as well as policy concerns related to HIV self-testing
- Encourage donors to support operational and field studies on HIV self testing as the basis of developing normative guidance on HIV self-testing.
What is self-testing and what does it involve?
Simply put, self-testing refers to testing yourself for HIV in the privacy of your home.
The option to self-test at a time and place of a person’s own choosing can create the potential to overcome some of the barriers of stigma, lack of confidentiality and difficulty in access that often apply to testing in HIV test centres or GUM clinics.
A variety of tests, from finger pricks to mouth swabs can produce results in 20 minutes. The first over the counter self-administered HIV test to be approved by the FDA (Food and Drug Administration) the US is the OraQuick in Home HIV test, made by the US company OraSure. It is licenced to be sold to anyone aged over 17 and older in shops or online in the US.
The test works by detecting antibodies to the HIV virus. To do the test, a person takes a swab of their upper and lower gums and places in a tube with a developer liquid for 20-40 minutes. If two lines then appear on the test stick, this indicates a positive test result. It means that antibodies against HIV were detected and the virus may be present. If only one line appears, then the test result is negative. The test is a preliminary (screening) test and results must be confirmed through follow-up testing by healthcare professionals.
Why discuss self- testing now?
If universal access to HIV treatment and care is ever to be achieved, it is critical to scale up HIV testing and counselling, and to increase access to appropriate interventions and support services.
However, many people living with HIV globally still remain unaware of their HIV status. For example, in the UK, a quarter of the people living with HIV are unaware of their status. In the US the figure is one in five.
In general, self-testing of HIV has the potential to improve testing amongst those with undiagnosed HIV; to reach hard to reach populations; to encourage testing amongst those who might not otherwise be tested and reticent testers; to increase the frequency of testing amongst people at higher risk of acquiring HIV, or those who prefer to do so as part of their regular health check; to strengthen individual’s roles in taking control and maintaining good health; and to facilitate mutual testing with sex partners. Self-testing can also be private, convenient and anonymous.
For self-testing to be truly effective, it needs to meet the 6 Cs criteria of self-testing. Consent; Convenience; Confidential; Correct results; Counselling and Connection to Care. In short, self-testing should be client initiated; voluntary; individuals be fully informed about what it involves, what a negative result means, what a positive result means, and there must be a robust pathway that ensures and enables those who test positive to link in to counselling and medical care, as well as for those who test negative to receive further counselling on risk reduction and maintaining an HIV-negative status.
However, before HIV self-testing can be scaled up, it is important to consider the Legal, Ethical, Gender, Human rights and Public Health Implications of HIV self-testing.
We heard from a number of speakers who covered issues such as the accuracy and efficacy of self-testing and linkage to care; social impacts of self-testing; potential models of self-testing; autonomous choices and relational responsibilities; self-testing and human rights and we also heard from experiences from the field on self-testing.
The presentations were followed by group discussions to look at action and policy to scale up self-testing. Small working groups looked at the different areas which included looking at Policy and normative guidance issues; Access, affordability, logistics and procurement; Priority populations for impact; Self-testing as part of combination prevention; Social and ethical issues for policy and implementation and Confirmatory testing and quality assurance. There was also a session looking at setting the operational research agenda. I.e. identifying research gaps in low-income settings and priorities for future research as well as looking at the process and development of papers for a special issue of Journal of AIDS and Behaviour dedicated to the topic of HIV self-testing.
Key take home messages included;
The importance of learning from different experiences and different contexts;
the complexity around the different models of self-testing as well as the different contexts in which self-testing is used. For example, MSM, Polygamy, and relationships where there are gender power imbalances, including employer/employee; the importance of having information; the importance of working with different networks and communities and ensuring that vital community voices and perspectives are involved in the advocacy around self-testing; the need to take forward self-testing in the context of supporting healthcare workers in task shifting as well as supporting individuals who test to be remain engaged in care; that there are still big operational questions on cost and well as the need to challenge pharmaceutical companies to produce different types of self-testing approaches as one size does not fit all.
From the perspective of people living with HIV, it is important that linkage to care receives appropriate policy and programmatic attention. HIV testing has always been put in the prevention funding streams but not built mechanisms for linking people from testing to care. The responsibility of those running the test program often ends with the providing the test result, some counseling and maybe a referral. Even in the resource rich settings, cascade of care represents a major barrier. Community-based organisations and positive networks have been instrumental in linking newly diagnosed People Living with HIV into care and support their retention in care. As self-test puts sole responsibility on an individual who tested positive to seek confirmatory HIV test, further counseling and enroll in care, there were serious concerns about how to support these individuals.
Before any action can be taken to scale up the self-test, key populations must be supported to fully understand benefits, risks and limitations of HIV self-test, articulate priorities, concerns and advise on how linkages to care could be best provided. Most importantly, policy makers must put in place a mechanism to monitor adverse consequences of self-test and redress for key populations such as sex workers and others already facing compulsory HIV testing as self-test could well be another way for brothels owners, mafias, corrupt cops to be able to enforce even more testing.
30 years into the AIDS epidemic, we know so well that communities play a key role in generating demands for testing, highlighting the importance of placing the person living with HIV at the centre of managing their health and wellbeing and advocating for availability and access to treatment. Without meaningful community engagement, self-test can probably do more harm than good.
At the end of the second day, the meeting participants came up with the following draft consensus statement. (The session that involved us coming up with the consensus statement was an eye opening experience I really enjoyed. In particular, the moments where it took us what seemed to be like at least 20 minutes to agree one sentence!)
‘This meeting supports HIV self-testing as a complimentary strategy to increase knowledge of HIV status and uptake of prevention, care and treatment. Rapid HIV tests are already being used as self-tests in many settings. HIV self-testing is an evolving approach that has the potential to increase access to testing and meet key needs of underserved populations, including generalised populations and healthcare workers in high prevalence areas, individuals in sero-discordant relationships, and other priority populations. It may also be suitable for individuals and couples who are re-testing due to on-going exposure, particularly if they have previously received counselling. While the current evidence on HIV self-testing does not indicate social harm, data are limited and additional research and on-going monitoring is necessary.
HIV self-testing requires a regulatory framework that ensures quality diagnostics that give accurate results in the hands of the intended user. National testing algorithms will need to be adapted to accommodate HIV self-testing.
Governments should support HIV self-testing strategies with meaningful community engagement and monitoring of the legal, ethical, gender and human rights implications of self-testing.’
A full report of the meeting will soon be available.
We would like to say a big thank you to GNP+ and the WHO/UNAIDS for enabling us to attend the meeting.
 Rapid HIV self-testing. Myers et al. AIDS 2013
 As described in the Positive Health, Dignity and Prevention framework [http://www.gnpplus.net/images/stories/PHDP/GNP_PHDP_ENG_V4ia_2.pdf ], placing the person living with HIV at the centre of managing their health and wellbeing involves the following: a supportive legal and policy environment; focusing on holistic health promotion, not only on transmission prevention; tailored to setting, key populations, and to the individual; defined by people living with HIV.