A commentary on Optimising the Impact of Key Population Programming Across the HIV Cascade, a supplement in the Journal of the International AIDS Society.
By Gus Cairns
“What is not
measured is not managed,” business guru Peter Drucker said. That axiom applies
with force to the Key Affected Populations (KPs) in the HIV pandemic. We cannot
devise evidence-based HIV programmes for populations of men who have sex with
men, transgender people, sex workers, people who inject drugs, prisoners and
displaced people, if we do not know the size of those populations, how many
have HIV and how many are at risk, and what their treatment and prevention
needs are.
In July of
last year, the Journal of the International AIDS Society published a supplement,
Optimising the Impact of Key Population Programming Across the HIV Cascade, dedicated to advancing key population-focused science and practice
across the HIV prevention, care, and treatment cascade. This supplement
contains a number of examples of successful work with key populations, all of
which point in the direction of how to further their good work and turn it into
widely-used programme components. Some of these steps are very simple, and ones
that could have been applied at any time during the history of the epidemic,
had the political will been there. It is encouraging now, however, that the
needs of previously invisible or denied people are being acknowledged and
programmes to test, prevent and treat HIV are being especially directed towards
them and tailored to their particular needs.
Those who are not seen are not
heard
Unlike Drucker, we are talking about
human beings, not sales figures; people, who may be able to articulate their needs
personally, had they the chance. So it might be simpler and more truthful to
say: “Those who are not seen are not heard.”
There are
good reasons why those populations and their needs are not measured. Or, rather
bad reasons: reason of stigma, self-stigma, denial, fear, violence,
imprisonment and ill- health both physical and mental.
Surveillance is key
To put it a third way, those who are not
sought are not found, and key populations are often not just invisible but
invisibilised: in some cases, as with men who have sex with men (MSM) in many
countries, to admit and research their very existence is confrontative to many
cultures.
One study in this
supplement that describes this invisibility is from Dakar, Senegal
(Mukandavire). Here, evidence from three Behavioural/Biological Surveys, fed
into a model of the local epidemic, has found that MSM are not only a key
population for HIV infection but numerically the key population. Yet MSM, as the authors acknowledge, have been
simply left out as a population group in previous surveys in west Africa,
perhaps due to cultural assumptions about the non-existence of homosexuality
there.
Targeting your general population
may exclude your key populations
The second
paper in the supplement (Hakim) spells out one consequence of such assumptions.
One of the few countries that has compared prevention behaviour in their general
population with their key populations is Mozambique. Here, surveys (conducted
in different years) found lower rates of HIV diagnosis and treatment in key
population members than in the general population. In 2016, a third of the
general population were diagnosed and three-quarters of those on ART. But
surveys from 2011-12 found less than a quarter of female sex workers and less
than 9% of MSM diagnosed and no more than half of those on ART.
Use the internet’s ‘e-communities’
How one
reaches and meets the needs of the previously unreached varies from population
to population. MSM worldwide have taken to the internet as their “e-community”:
the way they prefer to contact each other. One study from Thailand (Phanupak)
found more than half of MSM and transgender women spend over four hours a day
online.
Among key
populations that have access to the internet, this offers considerable
opportunity for self-empowering health education and support. In the article
presenting results from “Blue Ribbon Boys” survey with Hornet app users
(Ayala), it is notable that PrEP use was quite high at 13% among the
HIV-negative participants, and ART use in HIV-positive ones two times higher in
men who had heard that viral undetectability leads to untransmissibility of HIV
(“U=U”). These are messages likely to be learned and reinforced through
peer-to-peer discussion on social media.
Self-testing may be safer testing
for key populations
A community that spends a high proportion
of its time in the virtual world may prefer its HIV services to be offered
through the net and in private, too. Two studies in Nigeria (Tun) and Vietnam
(Green) found considerably higher HIV case-finding from MSM self-testing for
HIV than have been seen in clinic-based testing – in the Vietnam study, 11% of
those who were reached online and self-tested had HIV compared with 1.6% in
clinic testing. Fears that self- testing might not result in HIV-positive
testers being linked to care appear unfounded from these studies, with 93% of
those diagnosed in the Vietnam study linked to care, and all of them in the
smaller Nigerian study.
In
the Nigerian study, self-test kits were often ‘cascaded’ down to other friends
and family members, and something of a culture of testing together was
established. This echoes findings from a previous study in South African MSM.
Meet people where they are
Not all key
populations can network online, however, especially if they are highly
criminalised and fear identification. People who inject drugs and sex workers,
and MSM in countries with severely repressive policies or simply no internet
access, may still need to meet in physical locations or networks, and these
locations often present opportunities for engagement, as in the study of the
PLACE methodology used to reach cis and trans female sex workers in Malawi and
Angola (Herce).
The necessity
of continuing and intensifying such outreach programmes is underlined by the
fact that even though a relatively high proportion of study participants had
tested for HIV at some point in the
past, a large number of people tested HIV positive, and in Benguela in
particular, the vast majority were unaware of their infection. In the study of
people who inject drugs in Tajikistan (Kun), respondent-driven sampling was
found to be the best way to contact a population not yet infected, but possibly
at imminent risk of HIV that could become the first wave of cases in a new
local epidemic, with relatively low HIV prevalence but high rates of needle
sharing.
The power of peers
But online and
in-the-home services can only go so far. There comes a point when visiting a
welcoming facility is necessary, not so much because medical monitoring and
prescribing cannot be offered otherwise (they can, as task-shifting to
community-based health cadres and home-based services show), but more because people
need to ‘learn the ropes’ and feel empowered to ask for the services they need.
In many locations, engagement with care rather than testing is the
step at which people are most likely to fall out of the 90/90/90 care
continuum, and it is at this point rather than during the testing process that
support from an experienced mentor may be most necessary.
The article
describing the results and recommendations from key population-focused cascade
assessments in several countries (Lillie) suggests that this support may be
found in the form of peer navigators, HIV-positive volunteers or workers who
already know the system and can quite literally steer people to healthcare
centres.
Train all your staff in their patients’ needs…
Peer
navigators can also help negotiate with healthcare staff. Another theme that
often emerges in these kinds of assessments is that patients
complain of discriminatory, moralistic or ignorant treatment by
healthcare staff – not so often doctors as ancillary staff. Over ten per cent
of participants in the Thai self-testing study who answered a question about
stigma in healthcare settings had experienced it to the point of substandard
services or, in a third of cases, denial of them. Sensitisation training of all
cadres of staff involved in HIV care in centres and in outreach programmes is a
vital part of offering services that key populations members will wish to
return to.
So, while outreach
is vital, people also need to
be linked to HIV
and sexual health
care, and a sensitive, knowledgeable and friendly
reception by healthcare staff is a vital enabler of linkage to and retention in
care. Lack of it may frighten people off testing altogether: MSM in the Thai
study who had experienced discrimination by healthcare workers were actually
significantly less keen on home
testing, possibly because they felt it would not help them assert their
healthcare needs in the event of a positive
result.
…and patient loyalty will follow
One of the
most successful programmes documented in this supplement links the Sisters with
a Voice national programme for female sex workers in Zimbabwe with rises in
condom use with steady partners, recent testing, HIV diagnosis, engagement in
care, and ART prescription – most of the steps needed to improve the 90/90/90
cascade.
It is
significant that during the four years of the study – 2011-2015 – the most
frequent access point for condoms changed from local hospital clinics to the
Sisters clinics. This simple statistic speaks of the centres providing what the
women needed, and time and again studies
have shown that when centres offer resources that key populations can use in
health and risk self-management, ‘customer loyalty’ will develop.
The history of
the epidemic has shown us time and again that if members of key populations are
persecuted and criminalised, and if their HIV prevention and treatment needs
are neglected on the basis that only the deserving should be cared for – then
that is when the conditions are set up for an expanding HIV epidemic. If
engagement means exposure – to the police, to vigilantes, or to client or
dealer violence – then, unless safe spaces are set up in which their needs are
recognised, an easy-to-reach patient may become a hard-to-retain one.
Take stigma and violence
seriously
It is
important that the supplement ends with two papers about stigma and its most
severe expression, violence. The paper on the Stigma Index (Friedland) found
that in Senegal especially, while stigma against people with HIV in general was
lower than it was in other countries, the rates of stigma faced by key
populations was higher.
One
particularly important finding is that members of key populations, especially
MSM, trans women and sex workers, encountered high levels of sexual violence,
which can be both a cause and a consequence of HIV infection and can also serve
as a disempowering life event in itself. More than half of survey participants
from Cameroon had experienced sexual violence and 41% from Senegal. Nor is this
the only paper that mentions forced sex: in the relatively more sophisticated
setting of Thailand, in the Phanupak paper, nearly a quarter of MSM and half of
trans women had experienced sexual violence in the last 12 months.
Sexual abuse,
both experienced by adults and also by those adults as children, and intimate
partner violence in general, is one of the individual factors most strongly
associated with HIV diagnosis and with failure
to engage in care, and it is encouraging to see a paper
about a programme in Kenya
(Bhattacharjee) that has resulted in more FSWs and people who inject drugs
reporting incidents of violence and of incidents being investigated – though
the same increases have yet to be seen among
MSM.
Blind spots: who is NOT being seen?
Finally, one
cannot comment on a selection of studies describing progress and contributing
new evidence for key population programmes without mentioning key populations
and regions that are not covered here and speculating whether this reflects
wider gaps in research. Lack of
research may be the indicator of populations that are being stigmatised to the
point of invisibility - one possible example being MSM in eastern Europe and
central Asia.
Another reason
key affected populations are under-researched may be because they are by
definition hard to track. One example is newly-arrived migrants, a group who
are, as some studies have shown, at high risk of HIV in their host countries,
but whose characteristics, behaviours and needs may be hard to establish.
Conversely, if
populations are researched, their prevention needs analysed, their medical
needs addressed, and the multiple needs that prevent them from using prevention
and turn them away from treatment are met, then really significant reductions
in HIV incidence, even among the most apparently vulnerable people, can be met.
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