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What are some examples of effective human rights programming in the area of HIV/AIDS?
Introduction
In this section, you are presented with four examples of effective activities in the area of HIV/AIDS and human rights. These are:
- Litigation to advance access to HIV treatment in South Africa
- Providing a “toolkit” for a human rights approach to AIDS in Botswana
- Legislating for health and human rights: developing, and advocating for, better laws on drug use and HIV/AIDS
- Uniting to demand government (and NGO) action and accountability on HIV/AIDS in Senegal
Rights-based programming
As you review each activity, ask yourself whether it incorporates the five elements of “rights-based” programming:
- Participation
Does the activity include participation by affected communities, civil society, marginalized groups, and others? Is it situated in close proximity to its intended beneficiaries?
- Accountability
Does the activity identify both the entitlements of claim-holders and the obligations of duty-holders? Does it create mechanisms of accountability for violations of rights?
- Non-discrimination
Does the activity identify who is most vulnerable, and how? Does it pay particular attention to the needs of vulnerable groups such as women, minorities, indigenous peoples, and prisoners?
- Empowerment
Does the activity give its beneficiaries the power, capability, capacity, and access to bring about a change in their own lives? Does it place them at the center of the process rather than treating them as objects of charity?
- Linkage to rights
Does the activity define its objectives in terms of legally enforceable rights, with links to international, regional, and national laws? Does it address the full range of civil, political, economic, social, and cultural rights?
Finally, ask yourself whether the activity might be replicated in your country:
- Does such a project already exist in your country?
- If not, should it be created? If so, does it need to be expanded?
- What steps need to be taken to replicate this project?
- What barriers need to be overcome to ensure its successful replication?
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Example 1: Litigation to advance access to HIV treatment in South Africa
In 2001, the Treatment Action Campaign (TAC) and the AIDS Law Project (ALP) took legal action to secure access to medication to prevent mother-to-child transmission of HIV through litigation to have such treatment declared a constitutional right.
Project type
Litigation and community mobilization
Health and human rights issue
Treatment for HIV is unavailable to the vast majority of people who need it in South Africa. In 2001, it was estimated that approximately 70,000 children would be infected with HIV through mother-to-child transmission alone. Although treatment with azidothymidine (AZT) or nevirapine can significantly reduce the risk of HIV transmission from mother to child, as of 2001 the South African government was restricting this treatment to two pilot sites in each province.
Actions taken
Following a number of failed attempts to convince the Minister of Health to broaden the prevention of mother-to-child transmission (PMTCT) program, TAC and two other plaintiffs filed a notice of motion with the Pretoria High Court alleging that the National Minister of Health as well as the Ministers of Health for all the provinces were in breach of s. 27 of the South African Bill of Rights, which protects “the right to have access to health care services.”
Results and lessons learned
- In December 2001, the High Court ruled in favour of TAC and ordered the Minister of Health to make nevirapine available in all public hospitals and clinics where testing and counselling facilities existed. The court also ordered the Minister of Health to come up with a programme to prevent or reduce MTCT and to submit reports to the court outlining that programme.
- The Minister of Health appealed the decision to the South African Constitutional Court, which denied the appeal and found that the Minister of Health had a constitutional duty to give pregnant women access to nevirapine. The victory proved that human rights litigation can be an effective tool to advance access to medicines, particularly in democracies whose constitutions recognize access to health care as a human right.
- However, litigation is only one of many strategies that are needed to make HIV medicines genuinely available to all those who need them. Other factors that contributed to the success of the litigation included: a broad social movement accompanying the litigation; charismatic and committed leadership on the part of people living with HIV; alliances with treatment activists around the world; the existence of a constitutional democracy with independent courts and a constitution protecting health rights; and a legacy of public interest litigation dating back to the apartheid era.
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Example 2: A “toolkit” for a human rights approach to AIDS in Botswana
To demystify the human rights approach to HIV for local activists and government officials, the Botswana Network on Law, Ethics, and HIV/AIDS (BONELA) produced a user-friendly manual for action on HIV/AIDS and human rights.
Project type
Training and advocacy
Health and human rights issue
In its work with communities, health workers, government officials, NGOs, and businesses, BONELA observed a lack of awareness about what human rights are, and how to respect and promote these rights in people’s everyday lives. There was a lack of training materials on human rights that suited a local context, and human rights were often misunderstood as a foreign or “Western” concept that was not applicable to Botswana.
Actions taken
BONELA created a 14-part manual on AIDS and human rights:
- The Manual acts as both a resource and as a tool for capacity building, training, and awareness raising. It provides accurate, interesting, clear, and relevant information on key issues related to AIDS and human rights.
- The Manual uses a building-block approach in which the first 4 modules deal with foundational aspects needed for any discussion around human rights and HIV and AIDS. The user chooses from among other modules (5-14) appropriate to the intended target group. Each module suggests activities—including scenarios, discussion points, debates, and role plays—that can be used in community-led workshops or seminars.
- The introductory manual provides guidance on planning participatory learning methods and organizing a workshop or seminar.
Results and lessons learned
- The manual has catalyzed local and national workshops and seminars on HIV/AIDS and human rights, leading to much greater awareness of human rights issues and, in some cases, legal and policy change. A network of “resource focal persons” committed to rights-based approaches in health care facilities PWA groups has been established.
- As a small NGO, BONELA has had difficulty supporting its focal persons. To address this, it has allocated staff time, raised funds, and partnered with other NGOs with the mandate and interest to provide support.
- Raising awareness is important, but there is also a need for advocacy at policy level. There is a need to engage, sensitize, and persuade legislators of the importance of rights-based approaches to HIV. An informed and committed health care worker, for example, will have difficulty integrating human rights principles into her work without a policy mandate to do so.
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Example 3: Developing and advocating for better laws on drug use and HIV
The Canadian HIV/AIDS Legal Network has developed a model-law resource for NGOs and governments seeking to adopt human rights-based law and policy related to HIV among people who use drugs. The Legal Network is now actively promoting this resource at the country level.
Project type
Law reform
Health and human rights issue
Many countries with injection-driven HIV epidemics emphasize criminal enforcement of drug laws over public health approaches, thereby hindering effective responses to HIV and AIDS. Despite evidence supporting harm reduction services, millions of people around the world who use drugs lack access to such services because of legal and social barriers.
Actions taken
The Legal Network developed a “model law” resource providing a detailed framework of legal provisions and commentary on public health approaches to injection-driven HIV. The resource is aimed at policy-makers and advocates in developing and transitional countries where legislative drafting resources may be scarce. At the country level, the resource has been used:
- In collaboration with the State Department in Ukraine, to research and draft regulations permitting sterile syringe programs in prisons;
- In a submission to the sub-committee reviewing anti-drug legislation in the parliament of Indonesia, to encourage legal recognition of harm reduction;
- In the preparation of training modules on harm reduction and human rights for front-line harm reduction service providers in Russia;
- To advocate for the development of a harm reduction policy in Thailand.
Results and lessons learned
- HIV prevention, care and treatment services operate best within a clear legal framework that specifically protects the human rights of people who use drugs and enables harm reduction measures.
- Law reform is not a complete solution to effectively addressing the HIV epidemic among people who use illegal drugs, but it is a necessary and often neglected step.
- Reforming law and policy around drug use and HIV and AIDS within a particular jurisdiction can be challenging because of: hostility or inertia on the part of key government stakeholders; stigma and discrimination in the general population against people who use drugs; criminalization and social marginalization of people who use drugs, which often makes it dangerous for them to publicly advocate for their rights; and competing demands on the time and energy of local advocates.
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Example 4: Uniting to demand action and accountability on HIV in Senegal
Despite international praise for its response to HIV, Senegal was excluding vulnerable groups and civil society perspectives as it took its HIV response to a national scale. Five groups united to form a “watchdog” on the government’s AIDS response. Through a report, media advocacy, and meetings with government officials, they succeeded in changing key aspects of national AIDS policy.
Project type
Networking, documentation and advocacy
Health and human rights issue
Senegal has been praised as one of the countries in the developing world that has been most successful in fighting AIDS. Yet, as the government attempted to take its HIV strategy to scale, several problems emerged: the scale up proceeded without a clear strategy or vision; vulnerable populations (particularly orphans and vulnerable children) were not being targeted with interventions; respect for the rights and dignity of people living with HIV and AIDS was lacking; and access to HIV testing and treatment remained too limited. In general, civil society felt that it had been “pushed to the side” and had no real impact on government decision-making.
Actions taken
A group of five NGOs came together to denounce the problems that Senegal was facing in its response to HIV, to provide constructive solutions to overcoming these problems, and to participate in making necessary changes. They formed an informal network, the Observatoire de la réponse au VIH/sida au Sénégal (Watchdog of the response to HIV and AIDS in Senegal), which:
- Drafted a position paper highlighting the group’s collective reflections and recommendations on how to improve Senegal’s response to AIDS;
- Met with national HIV and AIDS authorities, as well as with international organizations, to present their analysis and seek feedback;
- Held a press conference to release the position paper and demand action;
- Succeeded in becoming actively involved in the processes and mechanisms established since to deal with the problems identified.
Results and lessons learned
- Today, civil society is more, and more meaningfully, involved in key aspects of Senegal’s response to AIDS. The project has shown that strong civil society engagement with government can improve the response to AIDS, as many of the problems in Senegal’s response to AIDS noted by the Observatoire are being addressed.
- Civil society organizations are most effective when they build coalitions and work together, propose concrete solutions based on sound analysis, and remain independent and critical of government while engaging with government officials.
