Introduction
The World Health Organization (WHO), in its Framework of Engagement with Non-State Actors (2018) categorizes non-state actors as including: nongovernmental organizations (NGOs), described as independent non-profits, including grassroots and civil society groups; private sector entities which are profit-driven businesses; philanthropic foundations that are donor-funded non-profits; and academic institutions which focus on research, education, and knowledge dissemination.1 Each of these actors has different, albeit sometimes overlapping, roles and impact. This article focuses on NGOs and their impact in shaping global health law, examining their contribution in advancing a human rights-based approach to health.
The Historical Evolution of NGOs in Global Health
In 1993, the World Bank reported that NGOs provided up to one-third of health care services in some developing countries. This was attributed to governments seeking to mitigate their fiscal burden while improving access and quality of health care.Reference Hecht and Tanzi2 Over time, the role of NGOs has evolved from focusing on health care service delivery to include research, human rights advocacy, health systems strengthening, and health education.Reference Pillay3 Significantly, NGOs have also grown as important pillars in global health governance. Since its inception in 1945, NGOs have had an active relationship with the United Nations which has strengthened over time. An example of this is the World Health Assembly’s adoption of the Framework on Engagement with Non-State Actors (FENSA). FENSA states that “WHO’s engagement with non-State actors can bring important benefits to global public health and to the Organization itself in fulfilment of its constitutional principles and objectives, including its directing and coordinating role in global health.”Reference Sidiropoulos4
Some of the contributions by NGOs to global health governance include advocating for public health treaties and policies that would improve access to healthcare services for all, with an emphasis on vulnerable populations such as women and children. NGOs have also played major roles in global health diplomacy, from advocating for global action against HIV/ AIDS to advocating for the adoption of the Framework Convention on Tobacco Control.Reference Jumbam5 NGOs have been instrumental in the growing field of global health law where there has been the codification of binding global health law standards that regulate interstate behavior and national conduct as well as the creation of global norms that influence state actions, responding to changes brought about by globalization, human rights frameworks, and the rise in democracy. Importantly, NGOs have been increasingly pivotal in ensuring rights-based global health policies.
Contributions of NGOs to Establish a Rights-Based Approach to Health
A rights-based approach to health is an approach based on the human right to health — but it looks beyond that right to encompass cross-cutting human rights principles for ensuring that health outcomes are achieved in a manner consistent with foundational human rights values. It focuses on underlying determinants of health — the economic, political, and social systems that determine public health.Reference Meier, Beracochea, Weinstein and Evans6 It is a key strategy in the development and implementation of public health policy — based on principles of participation, equality, and non-discrimination, transparency, and accountability.Reference Bustreo, Doubler, Gostin and Meier7
National Level Advocacy
In advancing a rights-based approach to health at the national level, NGOs have shaped public health law by framing health disparities as rights violations, relying on international standards by which to frame government responsibilities and evaluate conduct. For instance, during the COVID-19 pandemic, NGOs like Médecins Sans Frontières (MSF) primarily drew on a human rights frame when promoting access to vaccines and treatments. Through this framing, MSF advanced the call for people’s lives to be top priority, using phrases like “putting people before profit” and calling “on governments to take concrete steps to rethink and reform the biomedical innovation system to ensure that lifesaving medical tools are developed, produced and supplied equitably where monopoly-based and market-driven principles are not a barrier to access.”Reference Noh8 Similar approaches were utilized at national and regional levels, as seen in Kenya, where a national NGO, the Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN), used a rights-based approach to advise government and advocate for a COVID-19 response that safeguards health and rights of the most vulnerable and underserved in Kenya.9 In South Africa, NGOs litigated for the continuation of the national school nutrition program during the pandemic.10 The matter highlighted the interdependence between the right to health and the right to education, as well as the importance of addressing the underlying determinants of health.11 These NGO framings mirrored language in WHO governance — which acknowledged the importance of the human rights frameworks in strengthening the effectiveness of pandemic responses.12
Non-discrimination and Equality
NGOs continue to advocate to prioritize the needs of all communities, particularly the vulnerable, marginalized and those likely to be left behind. NGOs have been at the forefront in advocating for enabling legal and policy environments to reduce the impact of HIV and tuberculosis (TB) on key populations in Africa, including men who have sex with men, sex workers, transgender people, people who use drugs, and prisoners. The 2018 “Global Commission on HIV and the Law Supplement” reported that
thanks in large part to unceasing pressure from civil society, many governments have updated or repealed some of the worst laws criminalizing HIV exposure, transmission, and nondisclosure, and the possession and use of illicit drugs.13
Crises such as conflict and climate change have driven migration and highlighted the impacts of nationalist, racist and xenophobic policies on the right to health. Migrant women, children and LGBTQI+ face higher risk of rights violations. This is illustrated by a provincial government policy in South Africa that denied free health care services to pregnant and lactating women and young children who are asylum seekers, undocumented, or persons affected by statelessness, contrary to the Constitution and the National Health Act.14 The policy was declared unlawful through litigation brought by SECTION27.
Participation
NGOs have played an integral role in facilitating the participation of health care users in decisions and processes that determine their enjoyment of the right to health. Various NGOs have partnered with the African Commission on Human and Peoples’ Rights to document health rights issues in Africa. This was instrumental in having the Commission document and adopt a report that presented the state of the HIV epidemic in Africa through a human rights and gender lens.15
Accountability
NGOs document instances of health inequities and human rights violations to support advocacy and strategic litigation for accountable and inclusive health policies. For instance, KELIN utilized documented instances of involuntary and coerced sterilization and forced abortion among women living with HIV to file a constitutional petition to challenge actions of health care providers involved in such rights violations16
NGOs have consistently used litigation as a means to enforce rights as well as to hold both state and non-state actors to account. The HIV movement has relied on strategic litigation as a crucial tool to secure access to medicines17 and develop and enforce legal protections for vulnerable groups. For instance, in Attorney General v. Tapela, the Court of Appeal in Botswana struck down a government policy denying free HIV treatment to non-citizen prisoners, resulting in more HIV-positive prisoners obtaining access to necessary HIV treatment.Reference Ezer and Patel18 KELIN utilized strategic litigation to challenge the practice of incarcerating TB patients.19 The courts declared the practice to be illegal and unconstitutional, and directed the government to develop a policy that incorporates international principles on handling the disease. During the COVID-19 pandemic, litigation was also used to compel the South African National Department of Health to provide access to the COVID-19 vaccine procurement contracts, with the Court ordering that all COVID-19 vaccine contracts must be made public within 10 days.20 Through structural court orders, NGOs in South Africa have also been able to play a monitoring role ensuring the effective implementation of court orders.21
Finally, budget and expenditure analysis has been helpful not only in supporting litigation to challenge rights violations but in advocating for the financing of health rights realization.Reference Matshidiso22
Global Level Advocacy
NGOs have also engaged with United Nations (UN) mechanisms, leveraging their expertise, advocacy, and grassroots connections to influence international policies, contribute to discussions, and ensure that global standards are upheld. Many NGOs obtain consultative status with the UN, which allows them to participate in UN sessions and side events, engage in meeting dialogues with member states, and submit written statements.23
NGOs have submitted information and reports to UN Special Rapporteurs and other mandate-holders who investigate specific human rights issues, allowing NGOs to provide evidence, suggest recommendations, and highlight areas needing attention. The impact of this is seen recently in a thematic report24 by the UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, who cited submissions from NGOs in analyzing and making recommendations on the impact of digital innovation and technologies on the right to health, including on the availability, accessibility, acceptability and quality of facilities, goods and services. NGOs around the world submitted a petition to the Committee on the Elimination of Racial Discrimination on the lack of equitable and non-discriminatory access to COVID-19 vaccines. The Committee acknowledged continuing lack of access as discrimination and called on Germany, Switzerland, the UK and the United States to support a temporary waiver on intellectual property rights pertaining to COVID-19.20 NGOs also contribute to the UN human rights treaty bodies and the UN Human Rights Council’s Universal Periodic Review — submitting stakeholder reports, also known as shadow reports, which are reviewed alongside official government reports and provide a comprehensive picture of human rights situations in countries and influence UN recommendationsReference McGaughey25.
NGOs also partner with UN agencies (e.g., WHO, UNICEF, UNDP) to implement projects, develop policies, and address global challenges. These partnerships can involve joint research, program implementation, and advocacy efforts. For instance, The Global Fund to Fight AIDS, Tuberculosis, and Malaria (an NGO-led initiative) has mobilized significant resources and led global efforts to combat major diseases, strengthening global health governance by setting standards for disease prevention and treatment and improving coordination among state and non-state stakeholders.Reference Jürgens, Meier and Gostin26 NGOs have also engaged with international organizations whose mandates have an impact on health — e.g. intellectual property and trade,27 climate change, environment and energy.
NGO involvement in the development of global and national health law has not been without challenges. In various jurisdictions, the state has sought to limit NGO activities through legislation that unjustifiably limits the rights to freedom of association, assembly, and expression. Further, access to funding for NGOs has diminished. The effects of legislative restrictions and reduced funding are compounded where human rights defenders and staff working within NGOs are subject to acts of violence and murder.Reference Aho and Grinde28 Shrinking civic space not only cripples groups defending human rights and civil liberties, it also enables further repression and condones corruption by reducing the ranks of independent watchdogs of government and corporate entities.29 However, despite these challenges, NGOs continue to be invaluable stakeholders in global health.
Conclusion
It is apparent that NGOs have played, and continue to play, an integral role in global health governance and global health law. Depending on the circumstances, the roles have been complementary, supplementary or adversarial. Regardless, these interactions have contributed to the development of global, regional and national public laws and policies that advance the right to health. Given these invaluable contributions, it is important to foster environments in which NGOs are able to continue functioning independently. This is particularly important as global and national health faces new and complex challenges. Emerging issues such as environmental degradation, climate change, and noncommunicable diseases, most of which have been driven by corporate activities, present opportunities for NGOs to advocate accountability from the state and from corporate actors. Further, increasing austerity measures present opportunities to advocate for rights-based fiscal policies that consider a gendered perspective.Reference Stuckler30 Finally, NGOs will be critical in shaping global health agenda and strategies, as seen in UHC, where developing essential health services through NGOs is an important strategy for progressing towards universal access, especially in low- and middle-income countries.Reference Sanadgol31
