The role of
non-governmental organisations[1]
(NGOs) in HIV/ AIDS prevention and care
Hormazd N. Sethna
MPHP 439, Department of Public Health
Case Western Reserve University, Cleveland, OH 44106
Spring 2003
Introduction
Recent research in
Germany found that since 1995, about 200 HIV infected women delivered a baby
each year. To determine the HIV-status
early in pregnancy, voluntary HIV-testing of pregnant women was recommended in
Germany and Austria as part of pre-natal care (Buccholz, et al. 2002). In those cases where HIV infection was determined
during pregnancy, since 1995 the vertical transmission rate of HIV (from mother
to foetus) was reduced to 1-2%. This
low transmission rate had been achieved by a combination of anti-retroviral
therapy for pregnant women, caesarean section scheduled before the onset of
labour, anti-retroviral prophylaxis in the newborn and refraining from
breast-feeding by the HIV infected mother.
In 1998, an interdisciplinary meeting including clinical research
specialists, medical professionals and members of the German AIDS Hilfe (NGO)
updated this combined strategy. They
recommended monitoring of HIV infected pregnant women in prenatal care and
preventive procedures for the newborn in the delivery room. Recommendations were provided on the
starting point for anti-retroviral therapy in pregnancies without
complications, drugs and drug combinations to be used in these pregnancies, and
updated information on adverse effects of anti-retroviral drugs. Also, the procedures for different scenarios
and risk constellations in pregnancy had been specified. With these guidelines, the health
authorities in Germany and Austria are optimistic about maintaining the low
rate of vertical HIV-transmission (Buccholz, et al. 2002).
* * * * *
In Namibia, the
turnout for World AIDS Day, commemorated on December 1, 2001, was
disheartening, passing as it has since its inception – insignificantly. HIV/ AIDS continues to have a considerable
impact on the people of Namibia as thousands are infected and affected by the
disease. Yet, positive developments
occur. A capacity building workshop for
NGOs on HIV/ AIDS and Sexual Rights and a seminar on Women, HIV/ AIDS and Human
Rights, described by participants as “informative” and “inspirational” was held
in the capital (Tibinyane 2002).
Organised by Sister Namibia, the capacity building workshop created an
opportunity for local NGOs to learn from their South African counterparts and to
exchange experiences concerning issues surrounding treatment of HIV/ AIDS and
sexual and reproductive rights.
Representatives from two South African NGOs, the Treatment Action
Campaign (TAC) and the Women’s Health Project (WHP) were invited by Sister
Namibia to facilitate the workshop and speak at the seminar (Tibinyane 2002).
* * * * *
The examples of Germany and Namibia were picked for a
good reason. There is a sharp contrast
between the two countries. Germany, on
the one hand, is economically sound and has a strong national health care
programme. Namibia, on the other hand,
has a fledgling economy and a struggling health care system. In Germany, AIDS is not a major threat, and
its spread is kept well under control.
In Namibia, similar to other African countries, the spread of HIV/ AIDS
has reached a crisis level of epidemic and pandemic proportions. In spite of these stark contrasts, both
Germany and Namibia have one thing in common.
They both rely on non-governmental organisations (NGOs) to coordinate
efficient responses for various aspects of the HIV/ AIDS problem (Buccholz et
al. 2002; Tibinyane 1990).
The evolution of HIV/ AIDS care has resulted in a wide
range of caregivers who work within public and private hospital facilities,
NGOs, and community-based facilities.
Others are volunteers and community health and social workers based at
facilities or community sites. Many
caregivers are family members or part of a client’s close social network. Additionally, people living with HIV/ AIDS
(PHA) themselves engage in self-care and provide support to other PHA through
support groups (Kalibala 1999). One
such example of cooperative community-based efforts is the advances in policy creating
interventions for children in difficult circumstances in South Africa. Models addressing children suffering abuse
and neglect, or HIV/ AIDS show that NGOs have provided valuable solutions. These organisations have demonstrated their
commitment to caring and change by investing in individuals, groups and
communities (Sewpaul 2001).
The purpose of this paper is to explore the efforts of
non-governmental organisations in combating the global HIV/ AIDS crisis. Despite of the depth of literature already in
existence concerning the benefits and effectiveness of NGOs in the health
field, research in developing and evaluating the full potential and
effectiveness of the transfer of HIV prevention intervention models from the
research arena to NGOs in developing countries with high HIV incidence is still
in its infancy. NGOs working in tandem
with international, national and local public health organisations will allow
HIV prevention research advances to better benefit the global fight against
HIV/ AIDS.
HIV/
AIDS: Background and global impact
Before studying the role of non-governmental
organisations in the global response to AIDS, it is essential to review HIV/
AIDS, its spread, and global impact.
Acquired Immunodeficiency Syndrome (AIDS) is a fatal
transmissible disease of the immune system caused by the human immunodeficiency
virus (HIV). HIV slowly attacks and
destroys the immune system, the body’s defence against infection, leaving an
individual vulnerable to a variety of other infections. AIDS is the final stage of HIV infection
(Encyclopaedia Britannica 2003; Barnett and Whiteside 2002; Janeway Jr. and
Travers 1997; Lindenbaum 1999; Mach 2000; Mann 2001; UNAIDS 2002; Unnikrishna,
et al. 1993).
AIDS was first reported in 1981 by investigators in
New York and California. Initially,
most U.S. AIDS cases were diagnosed in homosexual men, who contracted the virus
primarily through sexual contact, or intravenous drug users who became infected
by sharing contaminated hypodermic needles.
In 1983, French and American researchers isolated the causative agent,
HIV, and by 1985 serological tests to detect the virus were developed (Encyclopaedia
Britannica 2003; Barnett and Whiteside 2002; Janeway Jr. and Travers 1997;
Lindenbaum 1999; Mach 2000; Mann 2001; UNAIDS 2002; Unnikrishna, et al. 1993).
HIV/AIDS
grew to epidemic proportions in the 1980s, particularly in Africa, where the
disease may have originated. This
growth was facilitated by several factors including increasing urbanization and
long-distance travel in Africa, international travel, changing sexual mores,
and intravenous drug use. By 2002, AIDS
had claimed over 25 million lives worldwide.
Approximately 40 million people throughout the world are infected with
HIV. People living in sub-Saharan
Africa account for more than 70 percent of all infections, and in some
countries of the region the prevalence of HIV infection exceeds 10 percent of
the population. Rates of infection are
lower in other parts of the world, but the epidemic is spreading rapidly in Eastern
Europe, India, South and Southeast Asia, Latin America, and the Caribbean. In China, the government estimated that up to
850,000 people had contracted HIV by 2000 – more than half having acquired the
virus since 1997. In the United States
the HIV/AIDS incidence has stabilized at about 40,000 new infections per
year. One-third of all new cases are
women, for whom the primary risk factor is heterosexual intercourse (Encyclopaedia Britannica 2003; Barnett and
Whiteside 2002; Lindenbaum 1999; Mach 2000; Mann 2001; UNAIDS 2002;
Unnikrishna, et al. 1993).
HIV
is transmitted by the direct transfer of bodily fluids, such as blood and blood
products, semen and other genital secretions, or breast milk, from an infected
person to an uninfected person. The
primary means of transmission worldwide is heterosexual intercourse with an
infected individual; the virus can enter the body through the lining of the
vagina, penis, rectum, or mouth. HIV
frequently is spread among intravenous drug users who share needles or
syringes. Prior to the development of
screening procedures and heat-treating techniques that destroy HIV in blood
products, transmission also occurred through contaminated blood products; many
people with haemophilia contracted HIV in this way. Today, the risk of contracting HIV from a blood transfusion is
extremely small. In rare cases
transmission to health care workers may occur by an accidental stick with contaminated
medical equipment. The virus also can
be transmitted across the placenta or through the breast milk from mother to
infant; administration of antiretroviral medications to both the mother and
infant around the time of birth reduces the chance that the child will be
infected with HIV. HIV is not spread by
coughing, sneezing, or casual contact (e.g., shaking hands). HIV is fragile and cannot survive long
outside of the body. Therefore, direct
transfer of bodily fluids is required for transmission. Other sexually transmitted diseases, such as
syphilis, genital herpes, gonorrhoea, and Chlamydia, increase the risk of
contracting HIV through sexual contact, probably due to the genital lesions
that they cause (Encyclopaedia
Britannica 2003; Barnett and Whiteside 2002; Janeway Jr. and Travers 1997;
Lindenbaum 1999; Mach 2000; Mann 2001; UNAIDS 2002; Unnikrishna, et al. 1993).
The
pathology of HIV infection involves three stages: (1) primary HIV infection,
(2) the asymptomatic phase, and (3) AIDS.
Primary HIV infection is the first stage during which transmitted HIV
replicates rapidly. Some persons may
experience acute flu-like symptoms, which usually persist for one to two
weeks. A variety of symptoms may manifest
themselves, including fever, enlarged lymph nodes, sore throat, muscle and
joint pain, rash, and malaise. Standard
HIV tests measuring antibodies to the virus are initially negative. As the immune response to the virus ensues,
the level of HIV in the blood decreases (Encyclopaedia Britannica 2003; Barnett and Whiteside
2002; Janeway Jr. and Travers 1997; Mach 2000; Mann 2001; UNAIDS 2002).
The
second phase of HIV infection, the asymptomatic period, lasts an average of 10
years. During this period the virus
continues to replicate concurrent to a gradual decrease in the CD4 count (the
number of helper T cells). When the CD4
count falls to about 200 cells per micro-litre of blood (in an uninfected adult
it is typically about 1,000 cells per micro-litre), patients begin to
experience opportunistic infections.
This is Acquired Immunodeficiency Syndrome (Encyclopaedia Britannica 2003; Barnett and
Whiteside 2002; Janeway Jr. and Travers 1997; Mach 2000; Mann 2001; UNAIDS 2002).
Full
blown AIDS is the final stage of HIV infection. The most common opportunistic infections include Pneumocystis
carinii, Mycobacterium tuberculosis, herpes simplex infection,
bacterial pneumonia, toxoplasmosis, and cytomegalovirus infection. In addition, patients can experience dementia
and develop certain cancers, including Kaposi’s sarcoma and lymphomas. Death results from the unremitting growth of
opportunistic pathogens or from the body's inability to fight off malignancies
(Encyclopaedia
Britannica 2003; Barnett and Whiteside 2002; Janeway Jr. and Travers 1997; Mach
2000; Mann 2001; UNAIDS 2002).
A
small proportion of individuals infected with HIV has survived longer than 10
years without developing AIDS. It may
be that such individuals mount a more vigorous immune response to the virus or
that they are infected with a weakened strain of the virus (Encyclopaedia Britannica 2003; Barnett and
Whiteside 2002; Janeway Jr. and Travers 1997; Mach 2000; Mann 2001; UNAIDS 2002).
Tests
for the disease identify for HIV antibodies, which accumulate after four weeks
to six months after exposure. The most
common test for HIV is the enzyme-linked immunosorbent assay (ELISA). The result is confirmed using more specific
tests such as the Western blot. A
problem with ELISA is that it produces false positive results in people who
have been exposed to parasitic diseases such as malaria; this is particularly
troublesome in Africa, where both AIDS and malaria are rampant. Polymerase chain reaction (PCR) tests, which
screen for viral RNA and therefore allow detection of the virus after very
recent exposure, and Single Use Diagnostic Screening (SUDS) are other
options. Due to the high cost of these
testing procedures, they are often out of reach for the majority of the at risk
population. Pharmaceutical companies
are developing new tests that are less expensive and that do not require refrigeration,
permitting more thorough testing for the at-risk population around the world (Encyclopaedia Britannica 2003; Barnett and
Whiteside 2002; Janeway Jr. and Travers 1997; Mach 2000; Mann 2001; UNAIDS 2002).
There
is no cure or effective vaccine for HIV infection. Efforts at prevention have focused primarily on changes in sexual
behaviour by promoting abstinence and increasing the availability and use of condoms. Attempts to reduce intravenous drug use and
to discourage needle reuse have also led to a reduction in infection rates in
some areas. To treat HIV infection, three
classes of antiretroviral medications are administered (Table 1).
Table 1: The three
types of antiretroviral medications*
|
Antiretroviral medication |
Function |
Examples of drugs |
|
Protease inhibitors |
These inhibit the action of an HIV enzyme called protease. |
ritonavir, saquinivir, indinavir, amprenivir, nelfinavir,
and lopinavir |
|
Nucleoside reverse transcriptase (RT) inhibitors |
These inhibit the action of reverse transcriptase. |
abacavir [ABC], zidovudine [AZT], zalcitabine [ddC],
didanosine [ddI], stavudine [d4T], and lamivudine [3TC] |
|
Non-nucleoside RT inhibitors |
These too inhibit the action of reverse transcriptase. |
efavirenz, delavirdine, and nevirapine |
* Encyclopaedia Britannica 2003; Barnett and
Whiteside 2002; Janeway Jr. and Travers 1997; Mach 2000; Mann 2001; UNAIDS 2002
Each drug has unique
side effects, and, in addition, treatment with combinations of these drugs
leads to additional side effects including a fat-redistribution condition
called lipodystrophy (Encyclopaedia
Britannica 2003; Barnett and Whiteside 2002; Janeway Jr. and Travers 1997; Mach
2000; Mann 2001; UNAIDS 2002).
Since
HIV rapidly builds resistance to any single antiretroviral treatment,
combination treatment is necessary for effective viral suppression. Highly active antiretroviral therapy (HAART),
a combination of three or more RT and protease inhibitors, has resulted in a
marked drop in the mortality rate from HIV infection in the United States and
other industrialized states since its introduction in 1996. Due to its high cost, HAART is generally not
available in regions of the world hit hardest by the AIDS epidemic. Although HAART does not appear to eradicate
HIV, it largely halts viral replication, thereby allowing the immune system to
reconstitute itself. Levels of free
virus in the blood become undetectable. However, the virus is still present in reservoirs, the best-known
of which is a latent reservoir in a subset of helper T cells called resting
memory T cells. The virus can persist
in a latent state in these cells, which have a long life span due to their role
as immune memory cells to respond readily to previously encountered infections.
These latently infected cells represent
a major barrier to curing the infection. Patients successfully treated with HAART no longer suffer from the
AIDS-associated conditions mentioned above, although severe side effects may
accompany the treatment. Patients must
continue to take all of the drugs without missing doses in the prescribed
combination or risk developing a drug-resistant virus. Viral replication resumes if HAART is
discontinued (Encyclopaedia
Britannica 2003; Barnett and Whiteside 2002; Janeway Jr. and Travers 1997; Mach
2000; Mann 2001; UNAIDS 2002).
As
with any epidemic, tragedy shadows the disease’s advance. From wreaking havoc on the homosexual male community
in San Francisco in the 1980s to infecting more than one-third of adults in
sub-Saharan African countries like Botswana at the turn of the 21st century,
AIDS has had a devastating social impact. Its collateral cultural effect is far-reaching, sparking new
research in medicine, complex legal debates, and intense competition among
scientists, pharmaceutical companies, and research institutions (Encyclopaedia Britannica 2003; ACORD and
ACTIONAID 1997; Apt and Blavo 1997; Bourdier 1998; Grose 1989; Janeway Jr. and
Travers 1997; Mach 2000; UNAIDS 2002).
To
raise public awareness, advocates began promoting the wearing of a loop of red
ribbon to indicate their concern. Activist
groups lobby governments to fund education, research, and treatment. Support groups provided a wide range of
services including medical, nursing, and hospice care, housing, psychological counselling,
meals, and legal services. Victims were
memorialized by the more than 44,000 panels of the AIDS Memorial Quilt, which
was displayed worldwide both to raise funds and to emphasize the human
dimension of the tragedy. The United
Nations designated December 1st as World AIDS Day (Encyclopaedia Britannica 2003; UNAIDS 2002).
Regarding access to the latest medical treatments for AIDS, the determining factors tend to be geographic and economic. Developing nations often lack the means and funding to support the advanced treatments available in industrialized countries. On the other hand, in many developed countries specialised health care has influenced the misconception that HIV is treatable or even manageable. This perception has fostered a lax attitude toward HIV prevention (such as safe sex practices or sterile needle distribution programs), which in turn has led to new increases in HIV infection rates.
The magnitude of the
disease in Africa, and in sub-Saharan Africa in particular, has prompted the
governments of this region to fight the disease in a variety of ways. Some countries have made arrangements with
multinational pharmaceutical companies to make HIV drugs available in Africa at
lower costs. Other countries, such as South Africa, have begun manufacturing
these drugs themselves instead of importing them. Plants indigenous to Africa are also being scrutinized for their
usefulness in developing various HIV treatments (Haselgrave 1988; Morna and
PANOS 1991).
In
the absence of financial resources to pay for new drug therapies, many African
countries had found education to be the best defence against the disease. In Uganda, for example, songs about the
disease, nationally distributed posters, and public awareness campaigns
starting as early as kindergarten have all helped to stem the spread of AIDS. Prostitutes in Senegal are licensed and
regularly tested for HIV, and the clergy, including Islamic religious leaders,
work to inform the public about the disease. Other parts of Africa, however, have experienced little progress. For example, the practice of sexually
violating very young girls has developed among some HIV-positive African men
because of the misguided belief that such acts would somehow cure them of the
disease. Better education and advocacy
of safer practices, as encouraged and directed by NGOs working in conjunction
with the United Nations system, and community leaders and members, can battle
the damaging stereotypes, misinformation, and disturbing practices associated
with AIDS (Mach 2000; UNAIDS 2002; WHO/ GPA 1989).
Laws
concerning HIV and AIDS typically fall into four categories: (1) mandatory
reporting, (2) mandatory testing, (3) laws against transmission, and (4) immigration.
The mandatory reporting of newly
discovered HIV infections is meant to encourage early treatment. Canada, Switzerland, Denmark, and Germany, among
other countries have enacted mandatory screening laws for HIV. Countries like Estonia require mandatory
testing of prison populations (in response to explosive rates of infection
among the incarcerated). The United
States requires some form of testing for convicted sex offenders. Other legal and international issues concern
the criminalization of knowing or unknowing transmission (more prevalent in the
United States and Canada) and the rights of HIV-positive individuals to
immigrate to or even enter foreign countries (Encyclopaedia Britannica 2003; Arnold 1997; Jonsson
and Soderholm 1995; UNAIDS 2002).
In
the United States, communities have fought the opening of AIDS clinics or the
right of HIV-positive children to attend public schools. Countries like Thailand, India, and Brazil challenge
international drug patent laws, arguing that the societal need for up-to-date
treatments supersedes the rights of pharmaceutical companies protected by
international patent laws. At the start
of the 21st century, Western countries were also battling the reluctance of the
Vatican, some Muslim nations, and other countries such as China to single out
homosexuals, prostitutes, and drug dealers for special attention out of fear of
appearing to condone their lifestyles.
These are all only some of the examples of the obstacles HIV/ AIDS
related NGOs all over the globe must face and surmount regularly (Encyclopaedia Britannica 2003; Arnold 1997;
Jonsson and Soderholm 1995; Mercer et al. 1991; Nayak 2000; Tielman et al.,
eds. 1991; UNAIDS 2002).
Less developed countries (LDCs) have made impressive
progress in human development since the Second World War. However, those achievements are being
undermined as countries lose young, productive people to HIV/ AIDS. Households fall into deeper poverty,
economies stumble and the impact of the epidemic is felt across society (UNAIDS
2002).
The demographic impact:
More than 60 million people have been infected with HIV since the
beginning of the epidemic almost 20 years ago.
In 2001 alone, the HIV/ AIDS epidemic claimed an estimated 3 million
lives. In the 45 most affected countries,
between 2000 and 2020 an estimated 68 million people will die due to AIDS. In many countries, AIDS is erasing decades
of progress in human development by drastically reducing life expectancy
(UNAIDS 2002).
The impact on households:
AIDS pushes people deeper into poverty as households lose breadwinners,
livelihoods are compromised and savings are consumed by the cost of health care
and funerals. Women are left bearing
bigger burdens as workers, care givers, educators and mothers. Yet, their legal, social and political
status leaves them more vulnerable to HIV/ AIDS (UNAIDS 2002).
The impact on the health sector:
In all affected countries, the HIV/ AIDS epidemic is putting the health
sector under strain. Overall quality of
health care dropped. There is a
shortage of hospital beds. While demand
for health services is expanding, more health care personnel are affected by
HIV/ AIDS. Home-care initiatives are a
key coping mechanism for mitigating impact (UNAIDS 2002).
The impact on education:
A noticeable decline in school enrolment occurs as AIDS hampers the
ability of education systems to fulfil basic social mandates as teachers
succumb to the disease. How well
educational institutions adapt and function will influence how well societies
recover from the epidemic (UNAIDS 2002).
The impact on enterprises and workplaces:
The vast majority of people living with AIDS worldwide are in the prime
of their working lives. AIDS weakens
economic activity by squeezing productivity, adding costs, diverting resources,
and depleting skills. The epidemic hits
productivity through absenteeism, organisational disruption, and the loss of
skills and organisational memory.
Production cycles are disrupted, equipment stands idle, and temporary
staff need to be recruited and trained.
Loss of know-how is the most often-cited cost factor (UNAIDS 2002).
Macroeconomic impact:
AIDS has a profound impact on growth, income and poverty. For countries with HIV/ AIDS prevalence
rates of 20% or more, the GDP growth has been estimated to drop by an average
of 2.6% annually (UNAIDS 2002).
The factors listed above are common to the impact of
HIV/ AIDS globally (UNAIDS 2002). On
the one hand, they trigger solidarity to combat government, community and
individual denial, and offer support and care to people living with HIV and
AIDS. On the other hand, individuals
suffering from HIV/ AIDS are stigmatised and ostracised by their loved ones,
their family and their communities, and discriminated against individually as
well as institutionally (UNAIDS 2002).
HIV/ AIDS-related stigma and discrimination builds
upon, and reinforces, existing prejudices.
They play into and strengthen existing social inequalities, especially
those of gender, sexuality and race. They
also play a key role in producing and reproducing relations of power and
control. They cause some groups to be
devalued and others to feel that they are superior. Ultimately, stigma creates and is reinforced by social
inequality. HIV/ AIDS victims are
denied health services and education, or may lose employment on the grounds of
their HIV status. This is another issue
that NGOs tackling the AIDS crisis must deal with on a regular basis. To overcome such stigma, these NGOs
collaborate with UNAIDS and the UN Commission on Human Rights (Disclosure of
HIV status and Human Rights 2000; ACORD and ACTIONAID 1997; Crane and Carswell
1990; Mercer et al. 1991; Shreedhar and Colaco 1996; UNAIDS 2002; Wiseman 1992).
Recent UN Commission on Human Rights resolutions have
unequivocally stated that “the term ‘or other status’ in non-discrimination
provisions in international human rights texts should be interpreted to cover
health status, including HIV/ AIDS”, and has confirmed that “discrimination on
the basis of HIV/ AIDS status, actual or presumed, is prohibited by existing
human rights standards” (UNAIDS 2002).
The human rights framework provides access to existing procedural,
institutional and other monitoring mechanisms for enforcing the rights of
people living with HIV/ AIDS, and for countering and redressing discriminatory
action. Two complementary kinds of
alleviation strategies are necessary to address stigma and discrimination: (1)
strategies that prevent stigma or prejudicial thoughts being formed, and (2)
strategies that address or redress the situation when stigma persists and is
acted upon through discriminatory action, leading to negative consequences or
the denial of entitlements or services.
Ultimately, it is at the community and national levels that HIV/
AIDS-related stigma and discrimination are most effectively combated. Communities and community leaders must
advocate for inclusiveness and equality irrespective of HIV status (ACORD and
ACTIONAID 1997; Crane and Carswell 1990; Mercer et al. 1991; Shreedhar and
Colaco 1996; UNAIDS 2002; Wiseman 1992).
In its role as the leading advocate for worldwide
action against HIV/ AIDS, UNAIDS – the Joint United Nations Programme on HIV/
AIDS – along with its eight cosponsors – United Nations Children’s Fund (UNICEF),
United Nations Development Programme (UNDP), United Nations Population Fund (UNFPA),
United Nations International Drug Control Programme (UNDCP), International
Labour Organisation (ILO), United Nations Educational, Scientific and Cultural
Organisation (UNESCO), World Health Organisation (WHO), and World Bank (WB) – states
as its mission to “lead, strengthen, and support an expanded response to the
HIV/ AIDS epidemic aimed at preventing the transmission of HIV, providing care
and support for those infected and affected by the disease, reducing
vulnerability of individuals and communities to the HIV/ AIDS epidemic aimed at
preventing the transmission of HIV, providing care and support for those
infected by the disease, reducing the vulnerability of individuals and
communities to HIV/ AIDS, and alleviating the socioeconomic and human impact of
the epidemic” (UNAIDS 2002). In order
to achieve this, the Global Fund to Fight AIDS, TB and Malaria was set up. The Global Fund complements the work by
UNAIDS by providing finance to meet these aims (UNAIDS 2002).
HIV/ AIDS programmes in developing countries and
countries in transition need to spend US $10 billion annually for an adequate
AIDS response. Current funds are less
than a quarter of that. To reach the
goal of US $10 billion annual spending on AIDS in developing countries, there must
be major increases in national government allocations, greater support from the
private sector and increases in international assistance through the Global
Fund, bilateral funding programmes and international organisations. Two-thirds of the funding is met by
international assistance (Brodhead and O’Malley 1989; Mercer et al. 1991;
UNAIDS 2002).
As the epidemic of HIV/ AIDS continues to expand to
all corners of the globe, it is clear that every sector of society must
respond. AIDS is no longer a concern
just of health authorities. The
potential impact of AIDS makes it a challenge in economic, political, social
and religious spheres as well. Among
organisations responding to the crisis, non-governmental organisations (NGOs)
are emerging as a powerful force in the effort to contain the epidemic. Diverse groups at risk of HIV infection have
been reached by NGOs in a wide variety of innovative programmes (Mercer, et al.
1991).
The
role of NGOs in HIV/ AIDS prevention and care
Widespread pressure for popular participation and a
declining faith in the capacities of governments to solve the interrelated
problems of social welfare, development, and the environment, lead to the
global upsurge of organised private activity through a new non-profit
sector. The non-profit sector has grown
increasingly important in its efforts to provide alleviation of societal
problems and injustices and the promotion of democratic values throughout the
world in recent years. This sector has
also become a major economic force with sizeable expenditures and multiple
levels of paid and volunteer employment.
Non-governmental organisations make up the subset of the non-profit
sector involved in development work (Salamon 1997).
According to Brodhead and O’Malley, the term
‘non-governmental organisations’ applies to diverse organisations that “work
together outside of government to address a need, advance a cause or defend an
interest” (Brodhead and O’Malley 1989).
However, the World Bank defines NGOs as “private organisations that
pursue activities to relieve suffering, promote the interests of the poor,
protect the environment or undertake community development” (World Bank 1988;
Mercer et al. 1991). Brown and Korten
further differentiate nongovernmental groups into the commercial and voluntary
sectors. According to them, “the
voluntary sector is seen as a distinct class of organisations that are held
together by common beliefs and shared values, rather than by political imperatives
(government) or economic incentives (the commercial sector)” (Brown and Korten
1989). They include locally-based
groups as well as international organisations having local offices in project
countries. Many are single-focus,
narrowly targeted organisations while others attempt to meet broader needs in
mainstream communities. All are
characterised by their dedication to a set of shared social values that guides
their organisational mission (Brown and Korten 1989; Mercer, et al. 1991).
NGOs have in increasing numbers voiced their concerns
in international discourse about numerous problems of international scope. Human rights activists, gender activists,
development agencies, groups of indigenous peoples and representatives of other
defined interests have become active in the international community. Since their inception, the United Nations
and its various organisations have felt the direct and indirect impact of
NGOs. NGOs are omnipresent in many
aspects of international relations, and have become critical to the UN’s
future. NGOs have assumed a central
role in activities involving human rights, complex humanitarian emergencies,
the United Nations relationship, the global environment, the international
women’s movement, operational coalitions and state relations, and AIDS. They also bring local experience to bear on
international decision making (Gordenker and Weiss 1996).
The NGO expansion, dubbed the “barefoot revolution”,
can be attributed to several external and internal factors to produce what has
become a significant event in international policy making and execution
(Gordenker and Weiss 1996). Three of
the more important factors include: the end of the cold war, technological
developments, and growing resources.
The end of the Cold War was the first, and perhaps most important
influence on NGO expansion. The demise
of the Cold War brought with it the end of ideological and social
orthodoxy. UN practitioners and diplomats
became less reluctant to interact with nongovernmental staff, opening up new
avenues of communication and cooperation within the decision making
process. The UN became a forum for
discussions between governments and NGOs.
When politics and security, especially over nuclear proliferation,
dominated the international agenda, NGOs were at a comparative
disadvantage. They had no weapons, and
only limited access to people wielding decision-making power. Since the end of the Cold War, NGOs have had
the capacity for direct action. They
also contribute advanced knowledge on issues such as gender, environment, AIDS,
relief assistance, human rights, and community development (Gordenker and Weiss
1996).
The development of new technology is widely considered
a second factor in influencing the prominence of NGOs in UN activity. Governments hostile to NGOs often fail in
their efforts to prevent information flow, interaction and networking through
the Internet and telecommunications.
Electronic media have made it possible to ignore national borders, and
create communities based on common values and objectives that were once the
exclusive privilege of nationalism (Gordenker and Weiss 1996).
A third factor is the growing resources and
professionalism of NGOs. Indigenous and
trans-national NGOs have attracted additional resources from individual donors,
governments and the UN. Western
governments, for example, have increasingly turned towards NGO projects on the
basis of reputation and cost-effectiveness.
This trend matches the progressively declining funding for foreign
assistance and with domestic pressures in donor countries to cut back on
overseas commitments. New
communications technologies are also helping foster the kinds of interaction
and relationships that were once possible only through air travel. Scaling up certain kinds of trans-national
efforts from neighbourhoods and regions to the global level, and scaling down
to involve local grassroots organisations are no longer logistically impossible
(Gordenker and Weiss 1996).
NGOs facilitate the formation of international institutions
and reinforce the standards promoted by these institutions through public
education, organised attempts to hold states accountable to these, and enhance
institutional effectiveness by reducing the implementation costs associated
with international institutions.
Increased networking capabilities also allows for improved capacity to
monitor states’ compliance with international agreements, promote institutional
adaptation and innovation, and challenge failed institutions or projects. NGOs employ a variety of
inter-organisational devices ranging from formal structures, to informal
interpersonal ties to increase their persuasiveness and efficiency. Four types of inter-organisational devices
can be identified: formal bridging groups, federations, UN coordinating
bureaus, and connections to governments (Gordenker and Weiss 1996).
Based on a close scrutiny of goals, relationships
among various organisations, and operational methods, it was deduced that NGOs
play two broad roles in society: (1) operational roles, and (2) educational and
advocacy roles. Operational NGOs are
more central to international responses in the post-Cold War world. They have the responsibility of fundraising. The rendering of services is central to most
NGO budgets, and the source for support from donors. Services rendered could include technical advice, tangible
resources for disaster relief, development, etc. (Gordenker and Weiss 1996).
While the target of organisational NGOs is
beneficiaries (or victims in case of emergencies), educational and advocacy
NGOs seek to influence citizens, and through public opinion, bear fruit in the
form of additional resources for their activities, as well as new policies,
better decisions and enhanced international regimes. These NGOs help to reinforce various norms promoted through
public education campaigns. This
heightened awareness among public audiences in turn helps hold the state
accountable for their international commitments (Gordenker and Weiss 1996).
Categorising NGOs, their trans-national relationships,
and their impact on the community marks an initial step toward understanding
non-governmental organisations. NGO
interactions with the UN system and the global community forms part of a larger
set of challenges as the international community copes with changing political
trends towards decentralisation and democratisation of global governance. NGOs have played a key role in this global
progression (Gordenker and Weiss 1996).
The role of NGOs in society cannot be ignored. This is true also in the field of prevention
and treatment of HIV/ AIDS. In areas of
the industrialised world hardest-hit by AIDS, NGOs helped set trends that have
now been institutionalised within AIDS prevention:
In the developing world, the NGO response to AIDS emerged somewhat more
slowly, reflecting both a lack of resources and experience, and a widespread
reluctance to recognise publicly or acknowledge the threat. As the epidemic has progressed however, both
well-established and newly organised NGOs have been among the first to respond,
promoting the need for persons with AIDS and HIV to have access to counselling,
support and health care. They have
mobilised impressive efforts for training, education, and other supportive
services while official declarations denied the existence of the problem (Morna
and PANOS 1991; Haslegrave 1988; and Mercer et al. 1991).
The importance of NGOs in the national AIDS control
programmes of developing countries has also evolved over time. When the World Health Organisation’s Global
Programme on AIDS (GPA) first began to assist countries to draw up national plans
for AIDS control, NGOs were not regularly consulted during planning, nor
represented on national AIDS committees.
Over time, GPA developed extensive links with a wide range of NGOs, and
now supports their efforts to combat AIDS at global, national and local levels
(Grose 1989). A 1989 resolution from
the World Health Assembly supported the importance of NGOs in the global
strategy for the prevention and control of AIDS, acknowledging that “their
commitment and versatility, and their knowledge and experience… can make a
special impact on individuals and society regarding AIDS and the needs of
HIV-infected people and those with AIDS” (World Health Organisation/ Global
Programme on AIDS 1989).
There is a growing list of NGO projects for AIDS
prevention and care that are providing critically needed services in many
different settings (Mercer et al. 1991):
The AIDS Support Organisation (TASO) - Uganda:
TASO was organised in response to the urgent need in Uganda for
medical, emotional and practical support for people with HIV/ AIDS and their
immediate families (Mercer et al. 1991).
Bombay Dost – India:
In response to violence against the gay community and a lack of
information about AIDS and other STDs, the newsletter Bombay Dost was started
to reach out to people with alternate sexuality in the city of Bombay (Mumbai) (Mercer
et al. 1991).
Rio de Janeiro Prostitutes Association (APRJ) – Brazil:
APRJ has worked out agreements with the local medical establishment for
regular medical check-ups, and with BEMFAM, Brazil’s largest private family
planning agency to provide condoms (Mercer et al. 1991).
Project Hope/ Family Life Association (FLAS) –
Swaziland:
FLAS, a local NGO is collaborating with Project HOPE, an international
NGO for an AIDS awareness and prevention programme. FLAS staff develop training programmes and educational materials
for non-literate adults, out-of-school youth, staff of FLAS family planning
clinics, and traditional healers, train 60 HIV/ AIDS counsellors in Swaziland,
and organise nationwide networks of regional counselling support groups (Mercer
et al. 1991).
Education Means Protection Of Women Engaged in Recreation (EMPOWER) –
Thailand:
EMPOWER offers support, assistance and access to education for women
workers in Patpong, the entertainment district of Bangkok, Thailand. EMPOWER also provides referrals and health
counselling on sexually transmitted diseases, nutrition, exercise, safe drug
use and family planning (Mercer et al. 1991).
Copperbelt Health Education Project (CHEP) - Zambia:
CHEP offers street children a five-day survival skills course directly
responding to immediate needs and long-term concerns including job training,
small business management, staying within the law, avoiding drug and alcohol
abuse, and preventing STD and AIDS.
CHEP also runs training workshops for health workers and community
leaders (Mercer et al. 1991).
NGO Consortium – Kenya:
NGOs formed a national consortium of organisations concerned with
improving HIV/AIDS prevention and care, ensuring regular dialogue between NGOs
and the AIDS Programme Secretariat, a government supported national AIDS
committee. The sharing of information
skills between NGOs leads to recognition for the role of NGOs played in the
AIDS programme (Mercer et al. 1991).
To identify the most effective roles for NGOs in HIV/
AIDS prevention and care, it is imperative to recognise the strengths and
weaknesses of NGOs. While not all NGOs
share the same strong points, some strengths are common to most. For example, NGOs, being smaller and having
more flexible administrative systems, and less cumbersome bureaucracies than
governmental organisation, can devise and implement programmes faster. This allows NGOs to deal more openly with
sensitive issues like sexuality and condom use (Arnold 1997; Brown and Korten
1989; Mercer et al. 1991).
NGOs are often created and staffed by community
members. This gives them credibility
with and understanding of the communities they serve. Thus, NGOs are more likely to attract community participation for
HIV/ AIDS prevention and care efforts.
They are also more likely to recognise what will be appropriate and
effective for their constituencies, and in so doing, increase the potential for
transforming community attitudes, beliefs and behaviours from within the
community. This is a much-needed and
valuable approach to HIV/ AIDS prevention.
Also, volunteers provide the energy and resources to staff many NGOs,
and even paid staff often work at lower salaries because of personal commitment
to the goals of the organisation (Mercer et al. 1991; NORAD 1991).
NGOs are also willing to involve in their programmes
those individuals who are poor and marginalised, and thereby, they succeed in
reaching groups such as prostitutes or intravenous drug users, who are outside
the mainstream society, and may be suspicious of public institutions. However, NGOs also have certain constraints
and limitations that must also be considered in identifying their most
effective roles in HIV/ AIDS prevention and care (Mercer et al. 1991; NORAD
1991).
Newer, smaller NGOs with small administrative staffs
are not properly designed for large-scale budgeting or technical
reporting. This leaves some
organisations at a disadvantage when competing for AIDS-related funding from
large international donors. Also,
smaller NGOs are limited by their in-house technical capacity for complex
projects. This prevents such
organisations from meeting the requirements of outside funders for monetary and
curriculum reporting, including evaluation of project efforts (ACORD and
ACTIONAID 1997; Brodhead and O’Malley 1989; Brown and Korten 1989; Crane and
Carswell 1990; Jonsson and Soderholm 1994; Mercer et al. 1991; NORAD 1991;
Shreedhar and Colaco 1996).
Since NGOs often operate with volunteer or modestly paid
staff, they risk the likelihood of erosion due to burn-out. They need to maintain a balance between paid
and volunteer staff in order to maintain project continuity, while preventing
attrition which is especially common in the emotionally demanding field of
combating HIV and AIDS (ACORD and ACTIONAID 1997; Brodhead and O’Malley 1989;
Brown and Korten 1989; Crane and Carswell 1990; Jonsson and Soderholm 1994; Mercer
et al. 1991; NORAD 1991; Shreedhar and Colaco 1996). Also, it has often been the case that NGOs work in isolation,
reluctant to collaborate with each other or with the government. This leads to limited sustainability, which
does not focus on developing local capacities to carry on without NGO or other
external support. This problem obscures
NGO projects which are highly successful on a small scale. Early successes of a project are often found
to be related to unique characteristics within the community or the NGO and may
not be replicable on a large scale (ACORD and ACTIONAID 1997; Brodhead and
O’Malley 1989; Brown and Korten 1989; Crane and Carswell 1990; Jonsson and
Soderholm 1994; Mercer et al. 1991; NORAD 1991; Shreedhar and Colaco 1996).
There is enormous potential for NGOs to play a major
role in the effort to combat HIV and AIDS.
In order for NGOs to perform at their full potential, Mercer et al.
suggested several approaches supporting the role of NGOs in their response to
the challenges of HIV/ AIDS (Crane and Carswell 1990; Mercer et al. 1991).
NGOs must be included in the design, implementation,
and review of national AIDS programme plans.
Also, the efforts of AIDS-related NGOs to form national and regional
consortia, in order to strengthen their abilities to collaborate with each
other and with their respective national AIDS control programmes, must be
supported and strengthened (ACORD and ACTIONAID 1997; Brodhead and O’Malley
1989; Brown and Korten 1989; Crane and Carswell 1990; Jonsson and Soderholm
1994; Mercer et al. 1991; NORAD 1991; Shreedhar and Colaco 1996).
Mercer et al. called for seed money and technical
assistance to be provided to strengthen the administrative and organisational
capacities of AIDS-related NGOs, especially in areas of great need. They argued the need for research about the
best ways that this can be accomplished, even if it requires more funding for
longer periods of time (1991).
Collaboration has also been recommended, between larger, more
established NGOs and their newer counterparts in a mentorship programme
designed to strengthen capacity of small, indigenous NGOs. This would enable the newer organisations
gain organisational skills more rapidly.
International and indigenous NGOs need to collaborate on projects, and the
success of such collaborations carefully evaluated (ACORD and ACTIONAID 1997;
Brodhead and O’Malley 1989; Brown and Korten 1989; Crane and Carswell 1990; Jonsson
and Soderholm 1994; Mercer et al. 1991; NORAD 1991; Shreedhar and Colaco 1996).
NGOs should be funded based on their strengths. They should be encouraged to build on their
strengths. In the area of HIV and AIDS,
this requires recognition of NGOs’ desire to provide support and care to
persons with AIDS, as an integral part of their prevention activities (ACORD
and ACTIONAID 1997; Brodhead and O’Malley 1989; Brown and Korten 1989; Crane
and Carswell 1990; Jonsson and Soderholm 1994; Mercer et al. 1991; NORAD 1991;
Shreedhar and Colaco 1996).
By developing links with local universities, NGOs can
substantially increase their technical capacities. Technical assistance in the field in key aspects of NGO programme
interventions, provided by consultants or staff who have experience in working
successfully with NGOs is a great asset, often preventing needless expenditure
of misguided energy, and will assist NGO projects meet the needs of the people
they serve. NGOs also need to analyse
the roles played by television, radio and the press. These media act as agents of information, education or sensationalism. Their influence in creating public opinion
can be monumental with regard to educational activities (ACORD and ACTIONAID
1997; Brodhead and O’Malley 1989; Brown and Korten 1989; Crane and Carswell
1990; Jonsson and Soderholm 1994; Mercer et al. 1991; NORAD 1991; Rodriguez
1994; Shreedhar and Colaco 1996).
Despite current literature concerning the work of NGOs, more research
analysing ways to improve their efficacy is necessary.
Developing and evaluating the effectiveness of an
interactive Internet programme or HIV prevention intervention models from the
research arena to nongovernmental organisations in developing countries with
high HIV incidence will highlight areas of improvement (Kelly 2000). The study will incorporate Internet-based
dissemination methods to establish a technology transfer approach that is
rapid, widely applicable and cost-effective for national and international
public health organisations including networks of NGOs. According to Kelly, previous research, found
that technology transfer methods that provide intervention manuals,
face-to-face staff training, and individualised consultation for implementing
research-based HIV prevention interventions facilitate their adoption by
service providers. This framework is
now being expanded to test the use of Internet technologies to transfer an HIV
prevention approach to NGOs in developing countries. Each NGO will be assessed to determine its organisational
characteristics, and the full repertoire of HIV prevention services it had
offered. The assessment of the efficacy
of the NGOs will determine maintenance of intervention use, tailoring or
adaptations made to it, staff attitudes and satisfaction with the intervention,
and implementation costs. According to
Kelly, this study “will add to our scientific knowledge concerning approaches
for transferring effective research-based HIV prevention approaches to
community-based service providers; will test and develop a prototype model for
using advanced Internet-based approaches for technology transfer; and will
allow HIV prevention research advances to better benefit the global fight
against HIV/ AIDS” (Kelly 2000).
Conclusion
While NGOs and international agencies have set up
specific programmes to stem the spread of HIV/ AIDS, some of the consequences
of wider development policies, such as increased mobility or migration or
increased income to spend on recreation, can counteract these programmes and
contribute to the spread of the virus.
Unless HIV/ AIDS prevention programmes adopt an integrated gender
perspective addressing power relations within relevant social and economic
context they are likely to fail. Many
HIV/ AIDS prevention programmes for youth in school fail because HIV/ AIDS
education is seen as irrelevant to their social and cultural circumstances. Youth education must therefore begin with an
analysis of the needs and roles of young people in their particular community
in order to respond appropriately to their needs (ACORD AND ACTIONAID, 1997).
After over a decade of research, it is recognised by
NGOs and many governments that long-term solutions are needed to address the
power imbalances. To date, solutions
have been incomplete or inadequate and future strategies need to concentrate on
power relations. There need to be
changes in these relations and appropriate programme responses must be
developed on this basis. Long-term
solutions are needed so that women and young girls have equal access to
employment, education and income generating opportunities (ACORD AND ACTIONAID,
1997).
International agencies and local NGOs need to
recognise the link between development, gender relations and roles and the
spread of HIV/ AIDS and to promote awareness in a broad context with staff and
within projects. Existing programmes
should be modified to ensure they are gender sensitive (ACORD AND ACTIONAID,
1997).
Information and services must be provided to support
people who are affected or infected with HIV/ AIDS or other sexually
transmitted diseases and infections (STDs and STIs). For example, confidential counselling and testing, information
about safer sex and different control methods.
The wider community must also be encouraged to use information services
and consequently NGOs should produce accessible material and widely publicise
these different services. NGOs are in a
strong position to support advocacy and campaigns that can battle the spread of
HIV/ AIDS (ACORD AND ACTIONAID, 1997).
Mercer et al. (1991) suggested that “… the need to
adopt multiple approaches and involve diverse organisations in bringing about
attitudinal and behavioural change at the community level,” will prevent
further destruction by HIV/ AIDS. This
review demonstrates how NGOs have embodied diverse objectives while maintaining
effective local, national and international campaigns to combat the HIV/ AIDS epidemic. Further development of NGO-governmental ties
and research defining efficient strategies to affect social change at the
individual level will determine the course of HIV/ AIDS. Clearly, NGOs will play a role as the
epidemic progresses.
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