Civil society should be engaged, funded, and protected in global health governance, say Roopa Dhatt, Allan Maleche, Nerima Were, and Loyce Pace

If we recognise that health is a human right, then healthcare systems must be viewed as part of a democratic governance process and we must ensure that citizens are active participants in decisions that affect their health.¹ A failure to recognise this has resulted in inequities in access to healthcare—both globally and locally—with the most vulnerable and marginalised populations bearing the brunt of the disease burden worldwide.

A vast majority of countries have political leadership that is not representative of the population they serve, making the role of civil society critical in representing the population and holding political leadership to account. The covid-19 pandemic and recent examples of racial injustice around the world make the voices of individuals, families, and communities most affected or at risk for poor outcomes all the more valuable. Investing in strong, independent civil society² is the smart thing to do and the right thing to do for better democracy and better health.

During the outbreak and spread of HIV in the 1980s, civil society organisations had a big impact, particularly around strengthening the response to the epidemic, gathering evidence, and advocating on behalf of patients for legal and policy changes. HIV advocates in Ukraine collaborated with advocates in the health sector, which resulted in increased funding for HIV prevention and treatment.³ In Nigeria, HIV advocates pushed for the removal of user fees for HIV treatment and care as a result of community‑led treatment observatories.⁴ Community based advocates in the Caribbean undertook a process to gather data and obtain population size estimates for men who have sex with men,⁵ and in Kenya and South Africa used strategic litigation to secure access to treatment and medicines for people living with HIV.⁶

Research looking at the impact of women taking on parliamentary roles in 22 countries after the introduction of gender quotas found a 9-12% decline in maternal mortality in low income countries.^7,8 But during the current pandemic, while almost all countries have established a national covid-19 taskforce to lead the response to covid-19, 85% of decision making and advisory teams have a majority of men,⁹ despite women being 70% of the global health workforce.¹⁰

Who is at the decision making table matters, particularly in a crisis. Therefore, we recommend a three pronged call to action asking that civil society is engaged, funded, and protected in global health governance:

1. National and sub-national advocacy should be strengthened and guided by principles of equitable sharing of information, and shared learning and experience should be used to influence more evidence based policies and decision making.
2. Increased investment for advocacy initiatives should be guided by a framework for new investment opportunities for civil society advocacy. This funding mechanism should consider new and not repurposed money that should focus on evidence based proposals to foster strong civic engagement with the health sector. A new funding mechanism should prioritise the following areas: efficiency and quality, collaboration and coordination, flexibility based on need and context, and institutional strengthening.
3. Equitable funding should be guided by more than economic metrics, but through the development of thresholds that consider human rights standards in determining priorities. Every nation has underserved communities (e.g. women or girls, gender or sexual minorities, differently abled people, persecuted ethnic groups or migrants, and other groups). The most difficult to reach populations and their spaces should be prioritised. Furthermore, a strong and clear commitment to human rights should be at the core of all funded activities and programmes.

In global health, we are witnessing an increased political commitment to civil society and citizen engagement in the shaping of policies and plans, including the sustainable development goals; the high level political declaration on universal health coverage; and in international institutions such as WHO, GAVI, and the Global Fund.¹¹ It is our hope that this push continues, not only through the directives of multilateral agencies and forums, but also in all aspects of overseas development assistance.

In the words of Winston Churchill, “Never let a good crisis go to waste.” Placing limitations on the diversity of perspectives influencing decisions can lead to blind spots in essential programmes and services, which hinder our objectives. Post covid-19, we must build back better, investing in civil society, which is critical for better health—and better democracy.

Roopa Dhatt is co-founder and executive director of Women in Global Health. She is a passionate advocate for gender equality in global health and a leading voice in the movement to correct the gender imbalance in global health leadership. She is also a practicing internal medicine physician in Washington DC. Twitter @roopadhatt

Competing interests: None declared.

Allan Maleche is an advocate of the high court of Kenya and a human rights defender. He sits on the UNAIDS Human Rights Reference group. He was a former board member of the Developing Country NGO Delegation to the Global Fund Board, where he also served as alternate board member. Allan is also a former member of the Global Fund’s Audit and Finance Committee, and the former chair of the Implementers Group of the Global Fund Board. Twitter @MalecheAllan

Competing interests: None declared.

Nerima Were is an LLB and LLM graduate from the University of Pretoria. She joined the Kenya Legal and Ethical Issues Network on HIV and AIDS in 2016 and is now the acting deputy executive director and the program manager for sexual and reproductive health and rights. She is also a tutorial fellow at the University of Nairobi and is pursuing her PhD. Twitter @nemowere

Competing interests: Partnership with co-authors on advocacy for global health funding.

Loyce Pace, president and executive director of the Global Health Council, is an outspoken advocate on domestic and international health issues from AIDS to Zika. With over 20 years of community mobilization experience focused on health policy, programs, and partnerships, she regularly educates decision makers about the value of investing in these priorities. Twitter @globalgamechngr

Competing interests: Partnership with co-authors on advocacy for global health funding.

This article is part of our Democracy and Health collection. The articles, including open access fees, were funded by the Council on Foreign Relations, Konrad-Adenauer-Stiftung, and the Institute for Health Metrics and Evaluation. The BMJ commissioned, peer reviewed, edited, and made the decision to publish these articles. This collection was launched at the World Health Summit, 25-27 October 2020, Berlin, Germany.

1. Yamin AW & Maleche Allan. (2017) “Realizing Universal Health Coverage in East Africa: the Relevance of human rights” BMC International Health and Human Rights 17: 21. DOI 10.1186/s12914-017-0128-0.
2. Cooper, R. (2018). What is Civil Society? How is the term used and what is seen to be its role and value (internationally) in 2018? K4D Helpdesk Report. Brighton, UK: Institute of Development Studies.
3. Zardiashvili T. (2016) “The Government of Ukraine has committed to changes that will significantly improve the quality of coverage of ARV, MDR-TB, Hepatitis C and OST treatments” available at https://aidspan.org/gfo_article/advocacy-increased-domestic-funding-success-ukraine.
4. Williamson R.T and Rodd J. (2016) “Civil society advocacy in Nigeria: promoting democratic norms or donor demands” BMC International Health and Human Rights 16:9; and Dauda D.S. et al,HIV Care Services in Nigeria”, available at http://www.healthpolicyplus.com/ns/pubs/17383-17696_NigeriaHIVUserFees.pdf
5. UNAIDS. (2020) “Advancing towards 2020: Progress in Latin America and the Caribbean” available at https://reliefweb.int/sites/reliefweb.int/files/resources/73658.pdf
6. Minister of Health v Treatment Action Campaign (TAC) (2002) 5 SA 721 (CC); and PAO and Others v the Attorney General Petition No. 409 of 2009.
7. Coscieme, Luca & et al. (2020) Women in power: Female leadership and public health outcomes during the COVID-19 pandemic. 10.1101/2020.07.13.20152397 available at https://www.researchgate.net/publication/342967741_Women_in_power_Female_leadership_and_public_health_outcomes_during_the_COVID-19_pandemic 
8. Eisen, Norma. (2019) The Democracy Playbook: Preventing and Reversing Democracy Backsliding. Brookings.
9. van Daalen KR, Bajnoczki C, Chowdhury M, et al. (2020) Symptoms of a broken system: the gender gaps in COVID-19 decision-making BMJ Global Health 2020;5 :e003549 available at https://gh.bmj.com/content/5/10/e003549
10. World Health Organization. (2019) Delivered by Women, Led by Men: A Gender and Equity Analysis of the Global Health and Social Workforce available at https://www.who.int/hrh/resources/health-observer24/en/.
11. Multilateral organizations such as the World Health Organization (WHO)(1), and GAVI, the Vaccine Alliance (2), and Global Fund for HIV, AIDs and TB (3) strengthen their civil society engagement mechanisms. (1)  http://civilsociety4health.org/  (2) https://www.gavi.org/operating-model/gavis-partnership-model/civil-society (3) https://www.theglobalfund.org/en/civil-society/