(alias " Aids Children World Tour ", a French NGO)
In 2008 - 2009, our organization TDMES undertook a two years survey (nine months on the ground), alongside with the children infected or affected by HIV / AIDS, their families and organizations who daily care for them.
MAIN RESULTS
"The aim of this article is to elaborate a better analysis of the consequences of AIDS pandemic on the psychology and well-being of OVC (Orphans and Vulnerable Children AIDS), young adolescents and CIAH (Children Infected or Affected by HIV/AIDS). First of all to understand the difficulties of (...)"
MORE INFORMATION (french version only)
"Cette étude reflète de la façon la plus objective possible nous l’espérons, les exemples de prise en charge des EIAS (enfants infectés ou affectés par le virus du VIH/Sida) qu’il nous a été donné d’observer sur le terrain, entre septembre 2008 et Juin 2009. En effet, les observations de cette étude sont basées sur (...)"
.
Children
infected, affected by AIDS around the world:
comparative
study, an early management of
their pandemic ?
L. Zahed*
*
Awarded in
cognitive psychology, awarded in cognitive sciences from
l’École Normale Supérieure;
Former president founder of the first French organization of support
and advice
for young people living with HIV, current president founder of TDMES
(alias, Aids
Children World Tour; since May 5th
2006, Paris).
SUMMARY
The aim of this article is to
elaborate a
better analysis of the consequences of AIDS pandemic on the psychology
and
well-being of OVC (Orphans and Vulnerable Children AIDS), young
adolescents and
CIAH (Children Infected or Affected by HIV/AIDS). First of all to
understand the
difficulties of establishing accurate statistics about the CIAH. On the
other
hand, to obtain a plethora of reproducible examples on how to support
CIAH in
their daily development. Finally, this article shall propose potential
ways of
research to stem the spread of the pandemic of AIDS among the
population of
children and young adolescents of reproductive age. Our conclusions are
based
on two years of an exclusive survey, nine months on the ground with the
CIAH
and the organizations that support them, in twenty nine countries
around the
world **.
**
A detailed
illustration of that exclusive enquiry online www.enfant-du-sida.org/blog
(English
translation online)
INTRODUCTION
Worldwide,
there are tens of millions of people living with HIV / AIDS (or PLWHA),
of
which many are children [1].
These estimations are more or less reliable, because it is always
difficult to
give a precise figure of the number of the CIAH. These estimations are
difficult to ascertain, even in the case of adults, for reasons that we
shall develop
throughout this article.
Furthermore, it should be
noted that many of these children have contracted the HIV / AIDS at
birth or
during infancy. It is estimated that half of those infected with HIV /
AIDS are
before their 25th years, many of them will die because of the disease
before 35
years old.
It
seems evident, unlike some particularly resistant prejudices, that this
pandemic has never been confined to Africa alone (where nearly 70% of
PLWHA are
living [2]).
And even if
one considers that 95% of PLWHA are living in underdeveloped countries,
the
fact remains that the HIV / AIDS is a threat to men, women and children
of all
continents [3].
A
pandemic of HIV / AIDS which globally remains a disease of the 21st
century, as
stated in 2008 the Nobel Prize for medicine and discoverer of the AIDS
virus,
Professor Luc Montagnier [4].
A health crisis that no
country in the world can pretend to ignore anymore, since this
phenomenon with
dire consequences to the very gates of Western Europe. Overall, we
shall recall
that in Europe 30% of PLWHA are unaware of their status [5].
These
are facts that we analyzed on the ground from September 2008 to June
2009: an
exclusive survey. Firstly to be able to built a better analysis of the
reason
why statistics are often difficult to establish on the subject.
Secondly and mainly,
to analyze at least partially, the type of psychosocial consequences
that may
affect this population of CIAH in the long term.
Finally,
we present in the discussion section of this article what could be the
collective
and interorganizational solutions as we might conceive them from now
on, to improve
care and quality of life of CIAH. All of which should make us
understand the
importance of lighting provided by these two years of studies on the
field, as described
in this article.
STATES SITES
First
some numbers, to establish a more accurate representation of the
current
evolution of the pandemic among the population of CIAH and their
parents. We
cite examples that could be very useful to shed light on the way these
statistics are established, and assume the real magnitude of such a
pandemic
among children and teenagers of reproductive age. We also emphasize
these
processes and socio-economic mechanisms that often seem to be at least
partly bounded
to this unprecedented health crisis (all graphs illustrating this
article, Table 1).
1 – Ground truth
International
bodies estimated in 2007 that less than 10% of children infected by
HIV/AIDS in
the world have had access to treatment suited to their needs [6]
. Next year in 2010 the
number of orphans affected by the death of their parents following
infection by
HIV/AIDS, should rise to over 24 million [7]. Finally in 2010,
35 million shall be living
with HIV/AIDS, among which more than 2.5 million children [8].
But
do we know exactly what kind of phenomena we are talking about ? Truly,
the
authorities in many countries still have little incentive to fully
inform the
public about the plight of these CIAH.
In
regions like the Caucasus, Kazakhstan for example, estimates for the
CIAH are
entirely controlled by the government. AIDS among children seems to be
one of
the ultimate taboo. The official statistics (provided by our local
sister organizations)
arranged to highlight the less alarming figures [9]. Official
statistics which ignore the plight of children in regions of
Kazakhstan, yet very
well known to be the epicenter of the AIDS pandemic in this country
(high
unemployment, drug trafficking, prostitution). Besides, the official
estimates seem
to be three to four times lower than our local partners daily
estimations on
the field.
A political line which of course does not go in the sense of an
accurate census,
and therefore effective measures to help the Caucasians CIAH.
Always at the gates of the
European Union, we also would like to mention the situation of children
of
Russia, where again the authorities are doing everything in their power
to
stifle organizations independent estimations, which could alert the
public opinion
about that health catastrophe : namely hundreds of thousands of Russian
children living with HIV/AIDS ; children left to themselves, facing all
kind of
risk that adults might face: drug addiction, prostitution, infectious
diseases
of all kinds, children dying alone, often abandoned in the street.
Beyond
Europe we would like to cite the example of India, where the government
tries
to minimize the reality of the progression of the pandemic among
children and
young adolescents, by combining all
NGOS
fighting against AIDS, under one single banner (using plenty of
attractive million
subsidies). Thus, the statistics for PLWHA in India have been divided
by half
in just a few months, miraculously.
Again, how limiting
progression of the pandemic among CIAH if the authorities of a country
such
India (the widest democracy in the world), merely manipulate public
opinion,
instead of accelerating the opening of Testing Center and encouraging
efficient
HIVpositive patient support ? Because, in India there are now fewer
than 30 ARV
(antiretroviral drugs) distribution centers across the country, for
more than
one billion people living in India [10].
The
example of Malaysia is another type of problem that we can not ignore.
In
Malaysia, the religious taboos and discrimination associated with the
HIV/AIDS
infection are such that the AIDS orphans of a different community from
the
majority of Malay people (Malaysia is an Islamic republic), are
displaced often
hundreds of miles from their home, to be integrated into orphanages for
HIV positive
children, exclusively reserved for Christian and Hindu HIV positive
orphans.
This is a double punishment,
an uprootment because of their ethnicity, as well as a discrimination
because
of their status. Despite the fact that they are innocent children who
are not
able to assert their basic rights, such as to remain with their
communities.
And the fact that the solution of sponsorship, successfully practiced
by some
of our sister organizations for many years (among which Orphelin Sida
International,
Paris), provides a solution to this kind of forced uprooting: the money
raised
through the generosity patrons and sponsors around the world, allow
these
children to be fed and follow a normal scholarship, without being
forced to
leave their community and their parents that still remains alive.
So
how extremist countries like Malaysia shall be able somehow to develop
a
comprehensive policy, united against the spread of the HIV / AIDS among
CIAH,
under such conditions? Especially since the Muslim majority and yet in
power,
is the first community in a straight line to the progression of the
infection
and its spread into the general population. This of course because of
religious
taboos and extreme positions of a government who refuse simply by pure
ideology, to inform, advice and prevent its people about the pandemic
among
children and teenagers [11].
However,
keep in mind that the extreme situation of the countries listed above
is the
exception. In most countries where we have conducted our investigation,
the
political and economical situation is stable.
This
indeed is a paradox, because the stability of a country should not
equate with
welfare and health of the population? From our point of view now the
answer
should evidently no, not necessarily. This is what makes certain
organizations
fighting against AIDS, for example in Johannesburg, telling us that "we
are
missing something".
For
South Africa for example, a country rich and politically stable today,
as most
countries where we conducted investigations, there is no civil war,
armed
conflict, poverty or social devastation enough to explain alone, the
seriousness of the health crisis and the magnitude of the situation
faced by
CIAH and their families [12].
2 – Underlying mechanisms
We
believe that the field survey we conducted is therefore the ideal
vehicle to
highlight, at least in part, the mechanisms that underlie the increase
in the
number of CIAH worldwide.
This
survey has identified a number of recurring patterns related to the
spread of
HIV / AIDS among the population of children and young adolescents.
These patterns
of contamination in positive feedback could sometimes last for several
decades
and can not wither away by themselves.
Indeed,
many countries where we conducted this survey are among the hardest hit
by the
pandemic. We cited above South Africa, where nearly twenty percent of
the
population is HIV positive: the most infected country in the world in
number of
PLWHA, where about 5 million people are infected with HIV / AIDS !
Still in Africa,
we can also cite the most infected country in the world (in terms of
percentage
of the general population). A small kingdom in Southern Africa, this
country is
Swaziland, where 25% of the population is HIV positive [13].
However,
is Africa and Swaziland the
situation is not hopeless. South Africa is no longer top the list of
countries
where the spread of the pandemic is the greatest. In terms of
prevention,
education, information of the general population, tedious long term
work of
organizations and local NGOS that we observed in Soweto and elsewhere,
seems to
bear fruit. The only damper on the attitude of governments in South
Africa, is Jacob
Zuma’s opinions : the South African president elected during
our investigation
in this country, still calling for "a shower after intercourse" to
get rid of the AIDS virus. A remark however maddening a certain number
of South
African newspapers after the elections (there's a certain progress from
a point
of view, the former South African health minister called for drinking
lemon
juice to fight against infection).
In
Swaziland, prevention campaigns highly visible in large cities, seem to
have
had an impact on the behavior of the population, especially the sharp
increase
of male circumcision (circumcision reduces the risk of transmission of
AIDS)
and the Continued use of condoms, especially among younger men.
Practices that shall
contribute to long-term decline in the number of children born infected
with
HIV / AIDS in Swaziland [14].
Of
course, far be it from us to describe
Africa as a model in the fight against AIDS among children and young
adolescents. How not to talk about the situation of CIAH in Kenya, near
the
capital Nairobi: Kibera, the largest slum in Africa where over 800,000
thousand
people are living (50% are children). Its has been estimated that in
Kibera over
25% of the population is either HIV positive or end-stage AIDS [15].
How not to cite these
people who build their homes (or what takes place) literally on the
rubbish
from the nearby capital. Families (often a single mother and several
children from
different fathers) live of prostitution and odd jobs. Malnutrition and
poverty
in Kibera are the blocks of an explosive spread of AIDS among children
and
young teenagers [16].
We
do not want to err on the opposite side, which would be to idealize the
experiences of children and teenagers that are facing AIDS in Africa.
There
should be a full study, exclusively reserved for this specific
phenomenon. Yet
this is neither the purpose nor the contention of this article.
Especially because
from our point of view, we have more to learn in a holistic,
transcontinental analysis
of CIAH daily experiences worldwide (more details on the mechanisms and
processes that underlie the progression of the pandemic in South Africa
,
Swaziland, Kenya, Tanzania, Morocco, Algeria : [17]).
Again,
the progression of the pandemic has never been confined only to Africa.
Then, what
are the mechanisms underlying the spread of the HIV / AIDS among
children and
teenagers around the world?
In
Russia for example, there is one of the largest population of children
infected
by HIV / AIDS, as well as many other STI (sexually transmitted
infections) and
opportunistic diseases. In Russia, like most former socialist
republics, it is
an economic cataclysm that devastated this region at the gates of
Europe after
the fall of the Berlin Wall in 1989. Number of children and young
teenagers
have been abandoned and neglected, left to themselves by parents unable
to care
for them. Thus, tens of thousands of Russian children were found living
in the
street, drug trafficking and prostituting themselves.
Today,
two generations of Russian sacrificed children are organized in bands
or
communities, living in the streets. The "street families" as our
partners in the field qualify them. Since these children have grown up
in the
street (those who survived), nowadays have to raise their own children
in the
street, all together staying in squats or basements of buildings in
outlying
areas of major Russian cities. That is the main reason why the number
of
Russian children infected by HIV / AIDS reached near 200 thousands.
Precise information
and estimates, however, is very difficult to ascertain, largely because
of an
obvious desire of the Russian authorities not to recognize the
problematic [18].
One
thing is certain: just twenty years after the breakup of the Soviet
Union, the
children we met in Saint Petersburg are still left to themselves. A
cycle of
propagation and raise of prevalence of the infection in a positive
feedback
pattern : young adolescents contaminated, contaminates the second
generation of
children, which in turn will contaminate other children and teenagers
newly
arrive in the “street life”, and so on. We have to
add that the situation of
Russia CIAH remains one of the most intractable in the world, from our
point of
view. Even local organizations are unable to uproot these children from
their
ghettos : most of these children are addicts, sick, living on the
margins of
society and they simply not see any reason to reintegrate the civil
society [19].
Besides
in Europe, we can mention countries like Poland or even Romania, a
country
where the recent CIAH health crisis reached unbelievable proportions at
the end
of last century. Fortunately, the care and prevention now seems
optimum, in a
country where has emerged a new generation of volunteers and where
prevention
centers were opened across the entire country.
At
the gates of Europe, Kazakhstan, meanwhile, the richest Caucasus state
regarding
natural resources of that region, has yet experienced one of the most
extraordinary increase in the number of PLWHA in the world or the last
decade [20]. Again,
the unprecedented economic crisis occurred at the end of last century,
created massive
unemployment in certain regions which have been industrious and hard to
reform
their lifestyle. That particular situation has caused a strong
infatuation, of
the younger generation in particular, for the black market and
smuggling of all
kinds : mainly for drug traffic and migrant prostitution (to and from
the big
Russian neighbor).
That
way, many women of childbearing age have been contaminated by the AIDS
virus.
An infection that they have passed for years (and still today) to their
clients
themselves often migrant workers, then to their children. The loop is
closed,
in accordance to an infectious pattern of positive feedback in
Kazakhstan that has
grown exponentially in recent years [21].
Thus,
in large part because of the
drastic policy of censorship that the Kazakh authorities have charged
against
all information about the numerous cases of children infected in state
hospitals.
And mainly because of the obsolescence of these hospitals and the poor quality of
cares that are provided (lack
of syringes and catheters not available for several infants in
intensive care
services, lack of ARV treatment, etc..). But someday, some
organizations
founded by parents of those infected children have decided to defy the
censors
to the peril of their lives. Note also that access to websites as
politically
neutral as TDMES website is simply impossible from a country like
Kazakhstan.
These
underlying mechanisms of positive feedback related to migrant
prostitution,
between Kazakhstan and other countries of the Caucasus, we also
observed them in
India : one of the hardest hit countries in the world (with the lowest
ratio of
ARV distribution centers VS. number of PLWHA). India: a country of over
one
billion people, millions of men, women, children infected by HIV/AIDS
and yet
less than thirty distribution centers of ARV across the entire country
(antiretroviral
are the only effective treatment against AIDS).
It
is actually India that has been given to see more clearly the positive
feedback
loop of bimodal contamination: both horizontal (among adults) and
vertical
(transmission from mother to children, through breastfeeding, or
bleeding
during delivery if no Caesarean section is done nor medication is
administered
to the embryo, etc..). In India more than in the Caucasus, the problem
for organizations
fighting against AIDS among the so-called migrant workers, reached
unprecedented proportions. These are workers who move sandstone
contract
hiring, or just young prostitutes in childbearing age, most often from
neighboring Nepal or the poorest states of Southern India [22].
A mix of population
that constitutes the ideal breeding ground for the spread of HIV / AIDS
among
children and young adolescents.
In
India, we must add to these processes, a wild lack of education and a
lack of
information toward the general population. Not to mention the
prejudices of
certain metropolitan mayor of Rajasthan, though well educated and
graduated,
that clearly indicated their support to the sustain we try to provide
generously for PLWHA. But they also told us why they consider those
PLWHA as
" persons of easy virtue, which would bring ruin upon their families
and
their children”. While these teenagers are actually minor
prostitutes who are
often subjected to this kind of trade against their will, who are
infected with
HIV / AIDS (sometimes from an early age), without any reliable
information
about it (India is a countries
where HIV
screening tests are rare). Young migrant prostitutes who infect on
their turn,
in a concentric transcontinental proportions, migrant workers also
fathers who
go spread the pandemic in their families and their villages far from
their.
Here
in India, we observed one of the best possible illustration of these
holistic processes
and mechanisms working to the spread of the virus within the population
of
children and young adolescents, as well as an obvious example of an
increasing
exponential statistics related to this phenomena. We can cite the
example of a
young woman, today working for an NGOS to fight against AIDS in India,
infected
in her youth by her husband during one his mission across the country.
Her late
husband's family accused her of being responsible for the death of
their son,
they drove her out from their home. Back to her original village, her
parents
offered her to sleep in the barn, she had to use the pond nearby to
perform her
ablutions. When the locals learned that she was HIV positive, they
decided to
evict her because she would be responsible for contamination of the
entire
village, simply by using the village pond’s water.
Yes,
in India the work against the spread of this pandemic is simply
enormous, both
in terms of prevention, care for the population concerned, and also in
terms of
fight against superstition and prejudice.
About
superstitions and misinformation, we would cite the case of the Islamic
Republic of Iran. Since the Iranian government until 2004 claimed that
"AIDS does not exist in Iran." Today authorities changed their mind,
pressed by the exponential increase of the number of PLWHA ;
particularly in
the areas of refugees, south of Tehran (mothers prostitutes and drug
addicts
from Afghanistan or elsewhere). The government of the mullahs finally
allow civil
associations and NGOS to exercise their prevention work and information
(program
against the transmission of HIV from prostitute mothers to their
newborn child,
methadone for drug
addicts,
"rainbow group" devoted to the gay community, etc. [23]).
All these actions in
Iran caused quite a stir, just as it allows us to appreciate the
urgency of a
situation which health authorities have had to resign to leave the
professionals take care of the prevention against it.
Yet
again, it is regrettable that it is not possible to estimate more
precisely the
magnitude of the progression of the pandemic in Iran (statistics
misleading or
nonexistent, threats of closure of the organization if it does not keep
the most
hermetic silence). A situation that condemns to itself a whole
population,
which is reduced to organize herself against censorship into groups of
civil
initiatives (associations and international NGOS are not allowed to
practice in
many countries). Groups of civil initiatives that can benefit from
using already
scarce international bodies, that consider the views of statistics
manipulated
by those in power (not to mention the political situation for the least
sensitive), that such and such country is not considered a priority.
The
archetypal example of such a scenario is that of Uzbekistan, where such
civil
initiative groups after an extraordinary work of several years in the
field
(particularly among young drug users), just begin to receive the
necessary
funds to support these families infected by HIV/ AIDS, like the family
we
visited in the southern neighborhood of Samarkand.
Anyway,
as we said earlier in this subchapter, it is clear that the wild majority of countries
where we conducted
investigation, have a relative stability, both politically and
economically. Except
countries like Venezuela or Peru, politically centralized or on the
opposite
extremely libertarian, led by their respective governments. Economical
and
political orientations that
have no
doubt have direct impact on the progression of the HIV / AIDS among
children
and young adolescents in these countries [24].
3 –
Long
term perspectives
Nevertheless,
inertia nor rulers greed could not reasonably alone explain the
magnitude of
the consequences of the pandemic among the CIAH. So what could be the
mechanisms underlying this quasi steady progression of the pandemic in
children
over 25 years, especially during this last decade?
It
is possible that this statistical increase in the number of children
with AIDS
is due partly to the fact that international surveys are better each
and every
year. We were concerned however that this increase is also connected
directly
with a real propagation of the virus in the population of children and
young
adolescents. It would be a relatively new phenomenon in the history of
the AIDS
pandemic, which is based in part (ironically) on the efficiency of ART
of last
generation.
On
one hand and we must rejoice, because adults live better and better and
longer
and longer with the HIV / AIDS, and this is attributable to a victory
over two
decades spent to fight against this pandemic, for the rights of PLWHA.
Moreover,
the desire to have children more frequently expressed by those adults
infected.
But the pregnant mother, then the newborn child, still often receive
only basic
cares. As a result, that horizontal transmission of the virus (from
mother to
child) reaches in some regions of the world unprecedented proportions,
as it is
already the case today in countries like India, South Africa or Russia [25].
But,
far be it from us to believe that the situation is hopeless. Quite the
contrary, when the intellectual, logistical and financial resources are
invested properly, the well-being of CIAH is clearly improved. Recall
for
example that in 2008, approximately 45% - against 35% in 2007 -
HIV-positive
pregnant women received antiretroviral treatment to prevent HIV
transmission to
their child. In countries with low and middle incomes, 21% of pregnant
women -
against 15% in 2007 - have benefited from HIV free screening test [26].
Moreover, again thanks
to an efficient and coordinated action, more children benefit from
programs of
pediatric ARV treatment: the number of children under 15 years old who
received
such treatment was around 198.000 in 2007 , and 275.700 in 2008 : so
38% of HIV
positive children receiving treatment [27].
Globally,
AIDS remains the leading cause of death among women of childbearing
age. Women
who in many countries are sexually active when they are still very
young girls.
They die from the virus infection of HIV / AIDS, often taking with them
their
infant. AIDS is the sixth leading cause of infant mortality in the
world: yet a
disease for which we have appropriate treatment adapted the needs of
these
children (and the death of a child on two is due to a disease
preventable and
treatable [28])
Thus
according to the director of UNICEF, Ann M. Veneman : "the disease
(HIV/AIDS)
still has a devastating impact on their health, their livelihoods and
their
survival" [29].
This
is why organizations such as TDMES and its sister organizations [30],
try to build up an
international and coordinated surveillance network, to support CIAH and
sustain
the wonderful work of our partners worldwide.
CONCLUSION
We
therefore conclude this study by highlighting the fact that after
nearly thirty
years of struggle against AIDS, in terms of management of the pandemic
among
the population of children and young adolescents, we are still at the
beginning
of an efficient support to this particular issue that yet concern the
future of
our humanity.
During
these two years of study, including nearly nine months on the ground
alongside with
children from twenty nine countries around the world, we have attempted
to
develop with the highest scrutiny a better representation of the
progression of
the HIV/AIDS pandemic among CIAH.
We
also briefly described socioeconomically and politically the mechanisms
and underlying
processes, that from our point of view could contribute to the
explanation of
such a health crisis.
According
to several examples that we have observed on the ground, we described
how
statistics on the pandemic concerning CIAH are often manipulated to
minimize
the seriousness of the situation of HIV positive children for in
Russia,
Kazakhstan or India. We have also seen how dogmatic, religious taboos
and stigmatizations,
could add to the counterproductive actions of governments like in
Malaysia for
example, to produce a very worrisome situation regarding the plight of
children
facing the progression of the HIV/AIDS pandemic.
We
have tried to detail as clearly as possible how the progression of the
pandemic
among children and young adults of reproductive age, based on bimodal
positive
feedback mechanisms, could lead to an exponential both vertical and
horizontal transmission
of the HIV/AIDS. In other words, the progression of the pandemic among
children
shall not reach any natural limit, neither today nor tomorrow. Even
though for
twenty five years, many politicians have explained that the AIDS
pandemic would
reach someday by itself a statistical boundary, and it would be
confined to
Africa alone.
All
this is wrong of course. We now know that the phenomenon of an
exponential
infection among children and young adolescents, is also a problem to
manage at
the gates of Western Europe (in Eastern Europe, Poland, Russia,
Caucasus,
etc..) .
Finally,
we noted that the countries hardest hit by the worldwide growth of the
AIDS
pandemic among young children or teenagers, do not know any economical
nor
political major crisis that could alone explain this fact. The children
are not
victims of armed conflicts, the socio-economical conditions are stable
(or has returned
to stable for several years). Russia for instance has step out of the
dark
years after the fall of the Berlin wall; India the greatest democracy
in the
world and is considered as a WHO student model; or even South Africa is
simply
the richest country on the richest continent in the world (at least by
the energy
standards of the 20th century [31])
These
data confirmed on the field by our sister organizations [32] [33], make the situation
experienced by the children even more unfair. Since in these countries
only a
few or no programs at all are undertaken for CIAH. However, it became
clear
that the potential for appropriate care and sustain is already in
place. Civil
associations and NGOS empowering them, carry out actions that improve
the fate
of CIAH (monitored through individualized files, socio-psychological
support, training
for adults and even for children, etc. : [34])
An
unfortunate situation, because if no major policy is undertaken
quickly, a
policy that is less erratic in space and time, the general population
in many
other countries may know the fate known by these countries now wasted
by the
HIV / AIDS pandemic. Again, when positive feedback processes such as
bimodal transmission
mechanisms (both vertical and horizontal) appear in the general
population of a
given country, nor the passage of time or the death of millions of
individuals
can break these loops and self-supporting cycles, except with a
coordinated,
long term policy in collaboration with NGOSs and grassroots
associations.
Joint
policies to fight against the spread of the pandemic among children and
young
adolescents, that shall not have any real efficiency without education
and
information of the wildest number of citizens of a given country. But
how
trainings and information to the people, and sometimes even the life of
an
organization itself, would be possible if the political contexts is
prone to
censorship ? Like Kazakhstan, Turkmenistan, Iran or Laos and Malaysia:
countries where websites of prevention and information about AIDS are
sometimes
impossible to access, such as that of TDMES. Countries where the CIAH
and their
families are stigmatized by the authorities themselves: positive
mothers
excluded from maternity common to other mothers, HIV positive children
placed
in special centers, infectious diseases hospital head department who
are not
allowed to simply recognize the existence of children infected by HIV /
AIDS,
etc.
No
need to veil the face. Again if no policy is a large international
company, the
number of ASIS increase exponentially around the world. From our point
of view
the answer is yes, we are undoubtedly only at the beginnings of an
efficient
management of that pandemic among children and young adolescent.
DISCUSSION
The
purpose of this study was not to establish accurate statistics of the
spread of
the pandemic among the population of CIAH. It was clear that our
organization
(or our sister associations in France or elsewhere), had not the means
to
establish such statistics in 29 countries on 5 continents.
Our
motivation clearly was to study in the field the daily life of the CIAH
and the
difficulties encountered by those of our sister organizations who
support them
everyday. Thus, we believe we have been able to develop a precise
representation, alive, according to a highest scrutiny, in a way to put
into
perspective the magnitude of this exponential increase of the HIV /
AIDS pandemic
among CIAH.
Here
below are some suggestions that from our point of view, could improve
the
long-term quality of life for these children.
1 –
Common
long term strategy
Generally,
actions to fight against the AIDS pandemic can be regrouped under three
categories: prevention, information, training - communication,
international
collaboration - fight for the spread of ARV treatment worldwide.
These
are also where the main axes financed by the major international bodies
(such
as UNAIDS). However, several conditions should be implemented to allow
the
establishment of more efficient actions, according to a triptychs
strategy to
fight against the HIV/AIDS pandemic (cited above) :
As
for the prevention section, actions must be undertaken with young
people: in
schools, colleges and even elementary schools, to educate teenagers
about AIDS.
For example, as TDMES did it in France in year 2008-2009 [35].
Or, as the Indian
authorities have begun with the SALSEP (school adolescent life skills
education
program). However, it is regrettable that so few teenagers benefit from
such
programs, either through lack of means or because of reluctance to talk
about
AIDS with these children.
Information
regarding the disease and its transmission should be better known to
the younger
generation, sexually active earlier today in some countries, and more
and more
harshly confronted with AIDS and other sexually transmitted infections [36].
As a result, CIAH and
their families shall be less stigmatized: ignorance is indeed the best
breeding
grounds for prejudice, discrimination and violence against them. One
example is
Poland, a member of the European Union since 2004, where some children
were
seen recently denied schooling because of their HIV positive status [37].
Finally,
we wish to emphasize here that the free information concerning the HIV
/ AIDS,
is a mainstay of prevention and education. That, contrary to this
policy of
censorship that has been given to observe in some countries such as the
Caucasus, for example: one of the region that has known in recent years
one of
the strongest increase of people infected with HIV / AIDS. Yet
international
authorities describe the Caucasian epidemic as being at its very
beginning : it
could be easily stopped if appropriate means are invested and
prejudices,
taboos set aside [38].
2 –
Five
steps of CIAH support
As
we saw earlier, an increased flow of information between the various
associations and NGOSs involved in this field is essential.
Brainstorming ideas
and programs that work : "The local associations are forced to find
themselves the solutions that work because they have no
choice!”, dixit Myriam
Mercy (SolEnSi
former president,
current president of Orphelin Sida
International in an interview for the documentary "Enfant
du Sida" [39].
About
screening and identification of CIAH, we must initially encourage
voluntary
testing. It is also necessary that the tests are available to the
general
population. We must especially urge those most at risk: children of
drug addict
mothers, prostitutes, street children engaged themselves in
prostitution and /
or addiction, offer a AIDS screening test to all pregnant women and
couples
about to get married, etc. [40].
Regarding
access to treatment, it is difficult to imagine that in 2007 only 10%
of HIV
positive children around the world have had access to treatment suited
to their
needs [41].
UNAIDS and
UNICEF had set a goal of raising that figure to 80% by 2010. Today,
there are
indications that this goal, however partial, is unlikely to be reached
next
year [42].
No wonder when
one sees the inertia and the venality of some democratic government.
For
example, in 2001 in Doha the Agreement on aspects of intellectual
property
rights related to trade, grants permission to countries experiencing a
health
emergency (including South Africa and India) to produce generic ARVs,
without fear
of sanction from the WHO (World Health Organization). Two Indian
laboratories
are now producing this type of ARV (Cipla and Ranbaxy laboratories),
but 99% of
that production is ultimately sold abroad for money, rather than to
serve
Indian populations. Not to mention that in 2007 there were only 25
distribution
centers of ARVs in 13 states of India: a country five times the size of
a country
like France, with over one billion people of which nearly three million
(probably more) living with the HIV / AIDS
[43]. Again
from our point of view, only a
coordinated action among an international network of NGOs could be
effective in
the long term response to such a problematic.
Finally,
the training of employees and volunteers of our sister organizations is
mandatory : how to tell a young child his or her HIV status or the
parents’ status,
how to make him of her understand the importance of medication, what
are their
rights and how to defend them, etc. As well as trainings to teach our
sister
organizations what shall be the best way to establish a long term
strategy to
fight efficiently against that pandemic : how to define its
organization main
goal, bound for what type of audience specifically, in conjunction with
what
type of structure, etc.
It
should be noted also that without substantial financial assistance,
appropriate
to the magnitude of the plight faced by CIAH, nothing shall be
possible. These
are the reasons that lead us to believe that information and trainings
are the cornerstones
of our fight for these children.
We could end this study without a
thanks, a
profound gratitude for their help and support during these long months
of
investigation, toward our sister organizations such as ARAS (Romania),
Doctors
to Children (Russia), Humanitarian Action Fund (Russian), Protect
Children Against
AIDS (Kazakhstan), Initiative group for people living with HIV
(Uzbekistan),
Khaneh Khorshid (Iran), Association for Protection of Child Laborers
(Iran),
Punjab AIDS Consortium More (Pakistan) KHANA (Cambodia), Salvation
Center
Cambodia (Cambodia), Minority Organization for Development of Economy
(Cambodia), Nak Akphivath Sahakum (Cambodia), Lao National Network of
People
Living with HIV / AIDS (Laos), Community AIDS Service Penang (Malaysia)
Via
Libre (Peru), Prosa (Peru), Casa Hogar Madre Teresa (Venezuela),
HOYWICK
(Kibera - Nairobi, Kenya), Association of fight against AIDS (Morocco),
El-Hayet (Algeria).
A
particularly warm thanks to Myriam Mercy (OSI, France), Dominica Socko
( Little
Prince, Poland), Doe Nair (WEG CHELSEA, India), Father Augustine
(Congregation
of the Samaritans, barrio de Caracas), Kay Muhammad (Right to Care,
Johannesburg), Thandi Nhlengetfwa (TASC, Swaziland), and finally to
Lucas and
his wife Ha, for their invaluable assistance, without which we would
not have
been able to overcome two years of investigation, a work which we hope
completely devoted to the world's children infected or affected by the
HIV /
AIDS.
.
A CONSULTER ÉGALEMENT
Rapport ONUSIDA - 2008
Rapport UNICEF - 2007
TABLE 1
TABLE 2
QUESTIONNAIRE d'EVALUATION
de la vulnérabilité multifactorielle des EIAS (en 25 points)
___________________
2 years of study on children
infected or
affected by HIV, 9 month on the field: side by side with our sister
organizations.
This
questionnaire was elaborated according to studies of S. Dekens about
multifactor
vulnerability of CIAH (children infected or affected by HIV / AIDS).
A
General information questions
1
– Name of the organization
2
– Name of the executive manager
3
– Eventually, the name of the person in charge of
the programs dedicated to children or teenagers infected or affected by
HIV
(Notice:
children are under 14 years old; teenagers are between 14 and 18 years
old)
4
– Address of the organization
5
– Telephone
6
- Website
7
– Email contact
8
- Can you give us a very short historic of the
creation of your organization?
9
– How many people are working for your organization?
(Thank you to clearly distinguish between employees and volunteers)
B
Vulnerability & Statistics
10
– How many people are infected by HIV/AIDS in your
country?
11
- Do they have free access to appropriate ARVs
treatments?
12
– How many children are infected in your country?
13
– How many of them are orphans?
14
- Do they also have access to ARVs treatments,
appropriate for children?
15
– What kind of help do those children receive from
the government of your country?
16
–How many infected
children is your organization taking care of?
(Thank
you to
clearly distinguish between those you are taking care directly, and
those you
are taking care of indirectly; for example, if you help parents
infected that
have children also infected, you are helping the children indirectly
and this
is a good point we want to report)
17
- How many affected
children (e.g. with one or both parents infected or dead because of
HIV)?
(Thank you
to clearly
distinguish between those you are taking care directly, and those you
are taking care of indirectly)
18
– Does your organization have a program dedicated
to children infected or affected by HIV/AIDS, that you would like to
highlight
particularly (in a few words, thank you)?
(Do you have psychological support for those children? Support groups? Holiday’s meetings? Any artistic expression group? Etc.)
C
Multifactor Vulnerability
19
– How do you evaluate the familial background of
the children you are taking care of?
(Do
you make home visits? Have you any contact with their school? Etc.)
20
– How do you evaluate the children’s nutrition and
health?
(Is
starving a problem in your country? Do you have nutrition support
programs? Do
you have contact with doctors or hospitals? Etc.)
21
– Do children infected or affected by HIV have
problems at school, because of their serological status?
(Do
you help them with advocacy support if needed? Do you offer trainings
and
information to teachers of that school? Etc.)
22
– Is drug addiction a problem for those children?
(Thank
you to distinguish clearly between children or teenagers users, and
children
that have one or both parents addicted to any kind of drug)
23
– Is prostitution a problem for those children?
(Thank
you to distinguish clearly between prostitute children or teenagers,
and
children that have prostituted mothers)
24
– Is War, gangs or guns a problem for the children
in your country?
25
– Did you create a personalized and confidential
files database concerning each and every child you are in contact with?
Références
[1]http://www.unaids.org/fr/KnowledgeCentre/HIVData/GlobalReport/2008/2008_Global_report.asp
[2]http://www.unaids.org/fr/CountryResponses/Regions/default.asp
[3] http://www.avert.org/aroundworld.htm
[4]http://www.humanite.fr/1992-12-02_Articles_-Luc-Montagnier-plaidoyer-pour-vaincre-le-SIDA
[5]
http://sante-medecine.commentcamarche.net/news/109710-ue-entre-30-et-50-des-seropositifs-ignorent-leur-infection
[6]http://data.unaids.org/pub/Report/2007/20060116_stocktaking_report.pdf
[7]http://www.unaids.org/fr/PolicyAndPractice/KeyPopulations/ChildAndOrphans/default.asp
[8]http://www.unaids.org/fr/CountryResponses/Countries/default.asp
[9]http://www.tourdumondedesorphelins.com/publications.html
[10]http://www.tourdumondedesorphelins.com/publications.html
[11]http://www.tourdumondedesorphelins.com/publications.html
[12]http://www.tourdumondedesorphelins.com/publications.html
[13]http://www.unaids.org/en/CountryResponses/Countries/swaziland.asp
[14]http://www.undp.org.sz/index.php?option=com_content&view=article&id=128:swaziland-partnership-forum-on-hiv-and-aids-spafa&catid=28:hiv-a-aids&Itemid=48
& http://www.uniteforchildren.org/files/tuapr_2009_en.pdf
[15]http://www.the-tribes-foundation.org/default.asp?MIS=12
[16]http://horslesmurs.ning.com/profiles/blogs/kibera-le-plus-grand
[17]http://www.tourdumondedesorphelins.com/publications.html
[18] http://www.come4news.com/140-000-enfants-russes-porteurs-du-virus-du-sida-249864
[19]http://www.tourdumondedesorphelins.com/publications.html
[20]http://www.hivpositivelife.com/aids_europe
& http://www.unicef.org/french/media/media_19225.html
[21]http://www.tourdumondedesorphelins.com/publications.html
[22]http://www.destinationsante.com/VIH-SIDA-les-ravages-de-la-prostitution-en-Inde.html
& www.saathii.org
[23]
http://orgs.tigweb.org/31241
[24]http://www.tourdumondedesorphelins.com/publications.html
[25] http://www.avert.org/children.htm
[26]http://www.un.org/apps/newsFr/storyF.asp?NewsID=20211&Cr=VIH&Cr1
[27]http://www.unaids.org/en/KnowledgeCentre/HIVData/GlobalReport/2008/2008_Global_report.asp
[28] C.D. Mathers, T. Boerma, D. Ma
Fat. Global and
regional causes of death. British Medical Bulletin,
10.1093/bmb/ldp028. http://bmb.oxfordjournals.org/cgi/content/abstract/ldp028v1
[29]http://www.who.int/hiv/pub/2009progressreport/fr/index.html
[30]http://www.tourdumondedesorphelins.com/index-3.html
[31]https://www.cia.gov/library/publications/the-world-factbook/geos/sf.html
[32] Table 2,
item « Multifactor Vulnerability »
.
[33]http://www.tourdumondedesorphelins.com/index-3.html
[34]http://www.tourdumondedesorphelins.com/publications.html
[35]http://www.unicef.org/india/resources_22$07.htm
[36]http://www.unaids.org/bangkok2004/gar2004_html_fr/GAR2004_07_fr.htm
[37]http://www.living-with-aids.org/poland/maly-ksiaze.html
[38]
http://data.unaids.org/Publications/Fact-Sheets04/fs_eeurope_casia_fr.pdf
[39]http://www.orphelins-sida.org/alerte/index.php?cat=6
(in collaboration with ACD’images production).
[40]http://www.who.int/hiv/about/PITC%20Press%20Rlease%20French%20FINAL%2024%20may.pdf
[41] Kissin
DM, Zapata L, Yorick R, Vinogradova EN, Volkova GV, Cherkassova E,
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Leigh J, Jamieson DJ, Marchbanks PA, Hillis S (2007). HIV
seroprevalence in
street youth, St. Petersburg, Russia ; AIDS, 12-21(17),
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[42]http://www.unicef.ca/portal/Secure/Community/502/WCM/WHATWEDO/hiv/assets/HIV_ADS_24_FRENCH.pdf