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



            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).


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            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).


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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


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:

  1. Advocacy for persons living with HIV/ AIDS,
  2. Targeting educational materials to specific groups,
  3. Improved access to experimental drug trials and health care, and
  4. Peer education.

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).



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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[1] English (UK) spellings and grammar have been used throughout this document.