June 30, 1998
"Ditch" Townsend, Malaysia
issue of context for Personal HIV Testing (or any actively promoted Voluntary Public Testing) has been mentioned
again recently by Rebecca Firestone (#46).
She notes potential problems where there is inadequate access to treatment,
information and opportunity for 'mitigation of concerns' (the latter
two arguably forming the core of HIV-related counseling). These however,
are not the only problems being faced by marginalised communities.
testing with pre- and post-test counseling, can seem obvious. UNAIDS
has noted a whole range of reasons testing and counseling; access to
anti-retroviral treatment to prevent vertical transmission; safe bottle feeding for babies of HIV+ mothers; improved
nutrition for HIV+ people; earlier
access to care and treatment and emotional support.
to these are issues like preparing a family to cope with bereavement; preparing wills; arranging for guardians or
adoptions of prospective orphans;
using condoms where partners have different HIV serostatus; accessing
welfare provisions; withdrawing life insurance and pension monies.
in some communities, knowledge of HIV+ serostatus may be damaging,
particularly for women - where
there is no access to AZT/ZDV to prevent vertical transmission, because
of cost or availability;
where dirty bottle feeding is more likely to kill infants than breastmilk transmission of HIV;
where nutrition is generally poor and resources and skills are too limited to lead to nutritional improvement despite
where health services (if even marginally available) may unofficially discriminate against those with AIDS-related
conditions, if HIV infection is known;
where treatment of the virus is astronomically expensive, or apparently only available in the field of uncontrolled
quacks’ dispensing ‘miracle cures’
at the cost of a life’s savings;
where a counseling workload of sufficient coverage would overwhelm any attempts at professional support service;
where family and community are ill-prepared to provide emotional support;
where the diagnosed infected person is likely to withdraw from medical or social contact - merely awaiting or hastening
where a man would rather divorce his infected wife and take custody of or abandon their children, than modify his
where a woman is not in a position to ask her partner to do anything for fear of him or other cultural reasons;
where many in society are overwhelmed with survival in extreme poverty, let alone taking in fresh, dependant children
to feed and nurture;
where condoms are not available, too expensive, poor quality, poorly used, used under the influence of alcohol, not ‘macho’,
associated only with CSWs, not
within the purview of a woman to raise as a topic with her partner;
where there are no welfare provisions to access;
where there is no life insurance or pension savings;
where society will shun those known to have AIDS and their children;
where women have little if any control over their fertility or circumstances;
where a national history of strife makes for an uncertain future, enhancing
one's resignation to fate;
where there might be evidence that people with diagnosed HIV with nothing added, die sooner than people with undiagnosed
HIV and nothing added (I can not
attribute a source - only hearsay that a such a study was done in Zimbabwe/Southern
Africa - perhaps another reader can clarify this);
I feel empowered to use a personal HIV test kit with reasonable insight.
I do not wish to restrict personal choice for others who feel the desire
to do so either - though pre-test counseling might cause them to choose
not to. My problem is with PROMOTING testing in contexts where (until I am convinced otherwise) inadequately
empowered people will end up more damaged.
To me, this issue falls within the debate on the ethics of any kind of health screening.
comments in recent postings by Ralph Frerichs, I worry when he says,
'Perhaps colleagues in wealthier countries who fund HIV/AIDS programs would consider remaining neutral on this
issue, thereby opening the door to further
experimentation by Public Health officials in the Developing world.'
if (as Frerichs says), "detection will likely lead to behavior change"
- in a marginalised context - then promotion of testing will bounce back up my hierarchy of priorities in these
contexts. However, I am frankly astonished
at the claim and wonder at its sources. I am not a researcher and would
value an exchange of opinion in SEA-AIDS on this question.
I have indicated before, I am non inflexible. Nor, I hope, is Prof Frerichs who replied to my last posting
'Testing issues may be different in Developed
versus Developing countries. This certainly could be true.'
Projects Development Advisor
(3 years so far on my current contract; resident in Southeast Asia for half my life)
Jacques Jeugmans, Philippines
you to Prof. Frerichs who keeps raising issues it helps all of us clarify
our understanding and force us to better analyze and assess the various
strategies that we want to support or implement.
would like to comment on "personal HIV screening". As
policy makers, we need to devise strategies based on objective and accurate data. Epidemiology brings us
information that is essential to ensure
that a considered strategy is scientifically sound. This is the first
condition to proceed. But this is not enough. We also need to (i) assess
the impact of the strategy on the people who are going to be affected,
and (ii) consider alternatives and how to best use limited resources.
home testing is epidemiologically sensible as described by Prof Frerichs,
but let's consider the other aspects. Home
testing will create a lot of suffering that may be avoided with a more careful approach. In HIV/AIDS, we are dealing
with life-threatening issues. When
you discover that your life is threatened (by HIV/AIDS, or with cancer for example), it is a "shocking"
information and all of us would need friends
and support at that time. With personal testing at home, to face the
diagnosis alone, or worse, in front of a partner that trusted you, may be very painful
one time casual partners, home screening may not have the same psychological
impact, but then we have the window period. But this is not my
testing will be useful when HIV/AIDS is considered as a "normal"
disease, when the community is ready to support the patient. We are unfortunately not at that stage yet home
testing without any support, especially
if promoted as a public health strategy, will just put pressure on
people and create useless sufferings.
we promote individual home testing, we should create an environment where (i) information is easily available and
accessible to everybody and (ii)
the community is ready to provide friendly support to those who are affected (and this include psychological
support AND medical treatment).
are (i) to inform and to change attitudes, so that the problem is
more easily identified and addressed by the whole community, and (ii) to establish the necessary support for people
living with HIV and AIDS.
tests are needed and must be developed, but to be used in the health centers or in a community ready to support
(NGOs included). But home testing
should not yet be promoted as a public health strategy there are other