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INTRODUCTION
AIDS[1]
is a fatal disease, caused by a virus called HIV[2]
which is transmitted by direct contact of a mucous membrane of the bloodstream
with a bodily fluid from a HIV-carrier[3]
. Sexual intercourse is the most frequent origin of transmission, but direct
contact of blood (by way of contaminated needles or a contaminated transfusion)
and breast-feeding are sources as well. Transmission can be prevented by
precautionary measures; the prevention of mother-to-child transmission (PMTCT)
requires medical assistance.
HIV has a relatively long incubation
time: symptoms may show from 3 months till up to 7 years after the infection.
There no known cure for the disease – available treatment can at present only
slow the effects of the virus. As HIV has a high genetic variability and often
becomes resistant to the ARV[4],
treatment with ARV’s should take place in a competent medical environment, in
order to retain the optimal effects of the drugs. Research on vaccine
development is under way, but has not yet brought convincing results. AIDS is
officially a ‘pandemic’ : millions have died and some 35 million people may live
with the virus.
Any fatal disease will severely affect
family life. In areas with a high rate of HIV infection, illness and death occur
on such a grand scale, that the whole fabric of society is affected and
traditional coping mechanisms for death and disaster are no longer functioning
in these circumstances. Where sexual contact is the main source of infections,
AIDS will kill the members of the active generation, between 15 and 50 years old
– leaving young children and old people to care for each other. In that process,
a range of ‘family types’ has originated – an additional justification of
discussion of HIV & AIDS in the World Congress of Families.
For practical reasons, the major part of
this paper will be discussing the situation in sub Sahara Africa. The highest
national rates of infection occur in that region and there are detailed figures
of prevalence, followed by studies on the effects of HIV & AIDS on families.
Elsewhere in the world, high prevalence is also found amongst tribal people in
South and South East Asia, in certain regions of Latin America and the Caribbean
and amongst certain groups in Eastern and South Eastern Europe and I will give
that some attention later on.
FAMILIES
AFFECTED IN AFRICA: new types of families and numbers
In a typical pattern, symptoms of AIDS
will first show with one parent in a family, who will die – after a long battle
with diseases[5]
that accompany HIV infection. In this way, a one-parent family is
already established. The second parent may also be infected and die later, so
that only the children of this core family remain. The extended family
may take care and send them to various members of the parent generation (aunts,
uncles) or to grandparents : the granny-headed family. In certain cases,
siblings may decide to stay together (in the parental home), where the eldest
will lead: the child-headed family (or child-headed household).
Reliable figures on the ways in which
family composition is affected by the death of parents, are difficult to find.
There are better figures, on national and regional level, on the loss of parents
from the children’s perspective (‘Aids orphans’) because UNICEF has taken that
perspective. On an aggregated level, these show that of all children in sub
Saharan Africa, in the age group 0 – 5 years already 16 % had lost one parent;
this increased in the age group 6 – 11 years to 36 % and in the age group 12 –
17 to a staggering 48 % of all youngsters![6]
As a result of known rates of infection and estimated death occurrence, the
number of orphans[7]
is supposed to triple from 2000 till 2010, to over 16 million children in sub
Saharan Africa alone. AIDS would be responsible for some 70 percent of the
mortality of these parents in 2010, up from under 40 percent in the year 2000.
The prevalence of HIV infection is highest in the countries of Southern Africa,
ranging from 15 – 35 % amongst the 15 – 50 year age group[8].
Botswana and Swaziland are hardest hit – but Botswana (a relatively rich
country) also has the best programme to combat HIV & AIDS.
In East Africa, prevalence figures range
from 5 – 8 % for the same age group and in West Africa these vary from 2 – 5%[9].
One should never forget, that HIV infection is not evenly spread amongst the
population and that relatively low figures can ‘hide’ a high rate of prevalence
in certain groups. Young women in particular are vulnerable, as they are often
exploited. Social consequences (meaning: families can not cope), one may
suppose, are greater in proportion as the prevalence increases.
FAMILIES AFFECTED :
empathy and solidarity
It is important to understand the
experience of HIV & AIDS, in order to understand how the victims of this
pandemic can be assisted Without empathy, attempts of outsiders, motivated by
sentiments of solidarity, to assist victims, may still be characterized as a
dehumanized, administrative approach, appreciated only reluctantly by those to
whom we want to commit. One should be aware of how HIV infection impacts at the
personal level of the carriers ( there is denial, anger, depression and a
psychological problem of self acceptance ), at a family or community level (
there may be stigma, judgment, rejection even; many carriers do not dare to
inform people around them ) and the consequences they have to face, on their
future and that of their families. One should understand generational sequence
in Africa: children are ‘old age insurance’ and when they die in their active
years, grandparents and grandchildren lose their life support. One should
finally be aware of a wider gloomy perspective for highly infected areas:
teachers, nurses and other caregivers in the community may become infected too,
get overburdened and give up their duties; such communities than experience a
negative spiralling of service delivery and children grow up in an unstable
situation, lose confidence.
There are other factors besides HIV, of
which one should also be aware as they contribute to the vulnerability of
families. Poverty comes first and foremost : families that worry daily about
food, have no resilience when additional problems present themselves. These
could be wars and internal conflicts, natural disasters and other illnesses,
like malaria. A general point is that (governmental & other) services to
society, tend to concentrate in urban areas and big villages, but remain absent
from outlying areas – where millions of poor people still live.
ATTENTION or
ACTION? Was there attention? Were actions taken?
HIV & AIDS were during many years seen
as medical problems and once the method of transmission had been established, a
lot of attention went to prevention; e.g. in Africa the Govt. of Uganda
conducted a successful campaign in the late ‘80ies to warn sexually active
people on the risks of their behaviour. Although ‘granny-headed households’ were
already known at the time, there was little attention in Africa for social
consequences of pandemic. It should be remembered that in the same period,
whatever remained of established social services in sub Saharan Africa, was put
under severe financial restrictions as part of so-called ‘structural adjustment
policies’, dictated by the World Bank. UNICEF deserves praise for having raised
the alarm on the worsening position of children as a consequence of the
pandemic, resulting in 2004 in a Policy Document, the ‘Framework[10]’
and (in the same year) in a commitment with 17 African Governments to set up
National Plans of Action in the East & Southern Africa region. The negative side
of this attention to ‘orphaned children’ (within UNICEF’s mandate and
statistically manageable) was an impression given that these children had no
‘family’ to care for them. Interesting financial comparisons were made, to
obtain a sense of what costs of assistance had to be considered, between care
for children (1) in a family setting, (2) with foster parents and (3) in an
institution (orphanage). Although costs would differ by country, a general rule
was established that care through (unrelated) foster parents was twice as costly
as the family solution and that an orphanage was at least three times as
expensive. In all of Africa, only Botswana has opted for the foster parents
approach.
UPDATE on ACTIONS : what is
required ? On a societal level : fight stigma !
A society should become ‘AIDS
competent’, meaning that Aids-awareness is a guiding factor in all actions and a first thing Society
and Government must do, is fight the stigma on HIV & AIDS. Carriers
should be seen for what they are: victims of a terrible disease. That is
also the teaching of religion(s), of moral and medical rules and human rights –
moreover, judgment and exclusion of infected, even suspected infected people, is
counterproductive too. People who fear exclusion will stay away from testing,
from treatment and other chances to know their HIV status, or to receive support
and counselling; in that way they become a source of ongoing infection in stead
of getting an opportunity to stop the disease. Fighting stigma is in the
interest of all victims ( innocent children amongst them ) and is a general
interest of society. Faith Based Organizations (FBOs) can do a great job when
they join this fight.
WHAT INTEREST IN ACTIONS?
On the family level: stay alive, retain a future
The first interest of families and
children, when HIV presence is being felt, is for parents, teachers and other
care givers to stay alive and lead a life as normal as possible, in order to
continue family tasks like providing an income, continue the upbringing of
children, work to anchor the family in community and society. That requires
well-functioning government services, quality Health Care in the first place,
but also quality of Education, Social Services and good economic policies. These
elements work best in cohesion. A second interest of families is that
appropriate preparations can be made for the future of surviving spouses,
children and elderly persons in the care of the family. That requires good
arrangements, within the extended family in the first place, but not without
witnesses in the community and it is demonstrably better if an outside
authority, e.g. Government Social services or an NGO/FBO equivalent thereof,
keeps an eye on such arrangements and supervises the custody of children and
others who cannot (fully) speak for themselves. It goes without saying that
openness about a HIV status is conducive to well-prepared arrangements.
WHAT IS REQUIRED FROM
SOCIETY & GOVERNMENT ?
On the level of society, not only should
members of Government and communal leaders be AIDS competent, but government and
society should also have the means to apply policies that take the existence of
the pandemic into consideration and will be directed, wherever possible, towards
fighting the disease and its (social) consequences[11].
Means must be (made) available, policies have to be formulated and correct and
fair application is an art by itself. Experience has taught that actions have to
be taken both ‘top-down’ and ‘bottom-up’ and that one approach is often
complementary to the other. A willingness to make required changes should not be
taken for granted, not even amongst HIV carriers (denial is strong). A strategy
is needed to find leaders who will engage themselves for change.
What means are required? Can African
states handle this pandemic? On their own – or with what degree of outside
support? The answers are different for each sub Saharan African nation. Some
relatively rich nations can do a lot all by themselves to fight the crisis at
least at home; some small and poor nations have shown remarkable creativity in
the limited actions they could afford
[12]. International funding, starting ‘too little & too late’,
got an important boost when the ‘Global Fund to Fight AIDS, Tuberculosis and
Malaria’ was set up and even more when the previous American Government started
PEPFAR[13].
Both Funds gradually evolved from a ‘medical’ and preventive approach, towards
recognition of the need to tackle social consequences as well[14].
Nevertheless, UNAIDS estimated in 2008 that available funds amounted to roughly
one third of the amount needed to turn the pandemic really around.
WHAT CAN BE DONE NOW ? What
have we learned?
In 2005, a few institutions active in
the field of ‘children & AIDS’ set up the ‘Joint Learning Initiative on Children
and Aids’ (JLICA)[15]
in order to investigate what went wrong and/or what had been successful in this
field. Donor governments and the Bill & Melinda Gates Foundation supported the
initiative and on the basis on large-scale research (more than 30 detailed
studies), JLICA presented its final report, called ‘Home Truths. Facing the
Facts on Children, AIDS and Poverty’ early this year 2009. The concrete,
specific and affordable policy measures proposed, follow four strategic lines :
• Support children through families
•
Strengthen community action that backstops
families
•
Address family poverty through national social
protection
•
Deliver integrated, family-centred services to
meet children’s needs
The last two lines may require some
explanation. Social Protection is best started by setting up ‘income transfer
programmes’ and JLICA mentions three types: income transfer to poor households,
child poverty support grants and old age pensions. Earlier I mentioned three
new types of families and one can imagine that the one-parent family, the
granny-headed household and the child-headed household would all benefit from at
least two types of transfers. In fact, these payments, also called ‘cash
transfers’ in earlier actions directed toward people affected by HIV & AIDS,
provide a very simple but highly effective means of immediately reinforcing the
families in their struggle. It is important to note that JLICA now recommends
not to distinguish between HIV-affected and other families, but to allocate cash
transfers to all needy families. This is ethically right and prevents stigma to
reappear.
The JLICA views on integrated,
family-centred services relate to the way Health Care, Education and Social
services should be organized: oriented towards families caring for children and
offering support in a cohesive way. Again, there should be no distinction in
services towards HIV-affected and other families – but in an AIDS-competent
society, everyone concerned understands how important these services are to
fight HIV & AIDS.
RECOMMENDATIONS Why are
these not taken up?
Inhabitants of rich nations may feel
that what is proposed here – quality Health Care, good Education and basic
Social services – is quite normal in those nations, albeit not without continued
discussions about improvements in the support system. Why are these services not
available in poor countries in Africa, taking into consideration the important
role they can play in the fight against the HIV & AIDS pandemic? What is the
view of African societies and governments? Is development assistance not
available and has it been put to good use?
On the African side, quite a number of
statements to fight HIV & AIDS, often inspired by the African Union, exist – but
implementation is not forthcoming. A partial explanation is that in most cases
international support for elaboration and financing was expected and promised,
but not forthcoming or specified under conditions that were difficult to meet.
On the donor side, a parallel process can be seen, where statements are made on
growing assistance or targeted help, without due consideration to the situation
in specific countries or in disregard of the cohesion of measures that is
required. Demands of the affected families, plans of African governments and
promises from donor organizations, often did not match. The latest of good
international intentions on the subject is Millennium Development Goal 6, to
combat HIV/AIDS, Malaria & other diseases, which has a target on ‘children
orphaned by Aids’ – the UN now reports that ‘planning increases but tangible
support is slow in coming’. A specific handicap of the international discourse
is that there is on one side a ‘rights approach’ and on the other side an
ODA-financing debate, on the UN target of 0.7 % of GNP[16].
A better story can be told about NGO and
FBO actions : these usually do match demands and plans offered. Good examples
are the ‘Circle of Hope’ concept offered by Plan International and the
‘Community Care Coalitions’ approach of World Vision. But viewing the size of
the problem, the fact that in many countries up to 80 % of all families may
qualify for assistance, it is clear that NGO’s and FBO’s, with their limited
means, will not be able to implement the large-scale attack on the effects of
HIV & AID which is deemed necessary. However, the experience and dedication
which they bring to the subject, should be used complementary to government
actions, in particular in the required ‘bottom-up’ part of the fight.
A final remark on the situation outside
Africa : in Brazil, where AIDS was a very serious threat in the 1980’ies, the
epidemic has almost been stopped, due to what seems a right combination of
factors, such as good medical policies, education and poverty reduction.
Endnotes:
[1] AIDS :
Acquired Immuno Deficiency Syndrome
[2] HIV :
Human Immunodeficiency Virus
[3] Ref.
Wikipedia entry on Aids for a more complete description of transmission
possibilities
[4] ARV :
Anti-RetroViral (treatment)
[5] Amongst
these diseases, tuberculosis (TB) stands out because of its very common
occurrence in Africa and the fact that it can be transmitted via
the respiratory route to non-HIV carriers. TB can be treated &
prevented, but multidrug resistance is a serious problem
[6] Figures
from UNICEF, year 2005, deaths of parents by all causes.
[7] Orphans
defined as having lost at least one parent; please note that in many
cases it can not be established whether the second parent (often the
father) is still alive – so it should not be assumed that a ‘one parent
orphan’ still has another parent to take care of her or him!
[8]
Excluding Angola, which reports a 5% prevalence – a figure that may be
underreported & obsolete
[9] Figures
derived, as much as possible, from UNAIDS 2008 reporting. It should be
noted that many countries do not (reliably) report on HIV infection and
even where they do, like to camouflage high prevalence by publishing
percentages of the full population or of the adult population – which
makes comparison very difficult.
[10] Full
title: Framework for the protection, care and support of orphans and
vulnerable children living in a world with HIV and AIDS, UNICEF (et.al.)
New York, 2004
[11] The
idea of an HIV/AIDS competent society, originating in the 2002 UNAIDS
‘Report on the Global HIV/AIDS Epidemic’, has been applied with
remarkable detail in the book ‘Turning a Crisis into an Opportunity’
containing strategies for Lesotho and written by a partnership of the
Lesotho Government and the Expanded Theme Group on HIV/AIDS (Third
Press Publishers, New Rochelle, NY,USA, 2004)
[12]
Botswana, as indicated before, was able to finance all necessary actions
by itself; Lesotho had, even before embarking upon the policies
mentioned in Note 11, instituted an ‘Old Age Pension’ for all elderly
persons above 70, that – as shown in an evaluation – turned out to be
used for 25% by grandparents supporting (Aids-orphaned) grandchildren.
[13]
President’s Emergency Plan For Aids Relief
[14] It
should be noted however that expensive and complicated AIDS research,
both on improving existing ARV treatment and on a possible vaccine, is
out of reach for developing countries; ethical aspects of the high costs
of patented drugs for the poor, have led to international debate and a
willingness to accept patent-free production
[15] The
field ‘children & Aids’ largely overlaps the field of ‘social
consequences’ or ‘the family and HIV/AIDS’ for that matter
[16] ODA :
Official Development Assistance; GNP : Gross National Product. Only 5
rich countries are on target.
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