On March 11, as part of the 2015 Ariadne Policy Briefing in Budapest, Hungary, FCAA and the FGHR co sponsored a breakout session addressing the intersections of health and human rights in the Ebola and HIV/AIDS crises. The session was led by John Kabia of the Fund for Global Human Rights, Guinea, Sierra Leone, and Liberia, and Louise van Deth of STOP AIDS NOW!, and was moderated by David Mattingly, Vice President for Programs, Fund for Global Human Rights. The session was developed by Matthew Hart, The Lafayette Practice.
Addressing a packed room of more than 20 donors and foundation leadership, the speakers discussed the urgent need for funders to see health as a rights issue and to understand the human rights dimensions of health emergencies. Using HIV/AIDS and Ebola as examples, the speakers drew lessons from the healthcare responses to the outbreaks and how a human rights and social justice perspective can aid funders in supporting more effective and just responses to epidemics.
John Kabia, Fund for Global Human Rights, Guinea, Sierra Leone, and Liberia
John provided an overview of the fragility of the health infrastructure in the region and how those weak systems contributed to the Ebola outbreak. Decades of severe poverty and prolonged periods of corrupt authoritarian rule have resulted in bleak healthcare outcomes, including low life expectancy rates, high maternal and child mortality figures and a low ratio of health personnel to population. With Ebola funding, corruption and a lack of accountability have resulted in the misappropriation of funds with impunity and contributed to widespread mistrust in government health programs.
The lack of trust in the healthcare response was compounded by the top-down heavily militarized response to the outbreak. Civil society groups documented serious human rights abuses committed by security personnel during quarantines, including sexual violence, unlawful detainment and restriction of free speech. Amongst communities impacted by Ebola, discrimination and stigmatization run high and undermine the effectiveness of the healthcare response, in part due to the government messaging and policies that criminalize the infection. One of the most urgent causes for concern is the disproportionate impact of the outbreak on women and girls. More than half of those infected in the region are women, however the response to the crisis has failed to take this disparity into account.
Lessons from the Ebola Outbreak
- Failure to address the human rights dimensions of a healthcare crisis can worsen the situation.
- Civil society groups need ongoing support to address social justice issues during emergencies to prevent governments from taking advantage of the crisis to restrict human rights and perpetuate abuses.
- Responses to emergencies should take into account existing vulnerabilities in marginalized sectors of the population, particularly when it comes to gender disparities–women, children, LGBTI etc. These groups must be involved in decision-making during a crisis or the response could exacerbate these inequalities.
- Local human rights and community groups must be integrated into a disaster response and their capacity to respond to health crises should be further developed. Excluding their participation fails to use their knowledge and credibility in the community to create an effective response.
Louise van Deth, STOP AIDS NOW!
Louise began her talk with a brief assessment of the current state of HIV/AIDS globally. There are 35 million people living with HIV, and 39 million have died. 70% of those who are positive live in Sub-Saharan Africa. The epidemic is growing among some key populations, including drug users in Eastern Europe and Central Asia and sex workers in the far East. More than half of those who are positive don’t know their status and don’t receive treatment, largely due to stigma and discrimination.
Louise raised the challenge: “AIDS can end by 2030. AIDS, not HIV. We also want all people living with HIV to have proper treatment, care and support to prevent new infections. This can only happen if we start incorporating a human rights perspective and looking at both medical and social issues.”
What Can the Ebola Response Learn from HIV/AIDS?
- Place community at the core. Community-based responses can build solidarity in communities experiencing a health crisis. The community structures built to respond to a healthcare crisis will outlive the health emergency. We need to elevate the work of local people and communities as sources of solutions and justice.
- Identify the most vulnerable groups during a health emergency, with a focus on more marginalized groups, including women and girls, and groups whose lifestyles are already criminalized. We need to ask: “what are the cultural beliefs and practices in this community and can they be incorporated into the response?” Coercive measures that ignore these concerns will only worsen health outcomes.
- Protection of frontline health care workers must be a priority. These workers play a huge role in destigmatization and can share key health and human rights information.
Next Steps: What Can Ebola and Health Crisis Funders Learn from HIV/AIDS?
Private funders need to view health as a political issue and expand their funding for lobbying and advocacy for fully-funded health rights. Stigmatization, criminalization and underlying social biases can undermine an effective healthcare response if they are not anticipated and addressed. Local civil society groups must be given a leadership role that utilizes their experience and local credibility in creating realistic and accountable health care responses.