A Rights-Based Response to COVID-19: Lessons Learned from HIV and TB Epidemics
Tenu Avafia, Boyan Konstantinov, Kene Esom, Judit Rius Sanjuan, and Rebecca Schleifer
The rapid spread of the COVID-19 pandemic around the world has and will continue to have an incredibly disruptive impact on many lives. As of 24 March 2020, at least 334,981 people have been infected and 14,652 have died across 174 countries.[1] Beyond these already tragic and growing consequences, COVID-19 will also have a major impact on the 2030 Agenda for Sustainable Development and the pledge to leave no one behind. The decisions made by governments, the international community, the private sector, civil society, and individuals will shape the trajectory of the epidemic and its impact on billions of people worldwide.
There are several lessons to be learned by governments and international organizations from the response to the HIV and TB epidemics that could be crucial to the success of the response to COVID-19. These include ensuring that human rights principles are entrenched in the COVID-19 response, relying on the best available evidence to inform decision making, and the fostering of global collaboration to fuel innovation and equitable access while ensuing the allocation of adequate financial and other resources needed to mount an effective response.[2] A rights-based response to COVID-19 contains many important aspects, among them, the right to health, equality and non-discrimination, freedom of peaceful assembly, association and movement, an adequate standard of living, as well as the right to benefit from scientific progress.[3] This viewpoint focuses on the right to health as underpinned by principle of transparency.
The Right to Health and its applicability to COVID-19
The right to the highest attainable standard of physical and mental health was first articulated in the Constitution of the World Health Organization. It is enshrined in the International Covenant on Economic, Social and Cultural Rights, the Convention on the Elimination of All Forms of Discrimination against Women, the International Convention on Protection of the Rights of All Migrant Workers and Members of Their Families, the International Convention on the Elimination of Racial Discrimination, and the Convention on the Rights of the Child, among other international and regional treaties as well as in at least 115 national constitutions.[4] This right is qualified by Member States’ commitment to its progressive realization in accordance with available resources.[5] In the case of a rapidly spreading epidemic such as COVID-19, it is critical first, that UN Member States take all reasonable steps possible to protect, promote, and fulfil their obligations pertaining to the right to health under international and national law, including that international funding and support is channelled to countries with the most fragile health systems and vulnerable populations who could be hardest hit. While the right to health is underpinned by the principle of equity, effective responses to HIV and TB have also demonstrated the importance of focusing on vulnerable or most at-risk populations.[6] In the case of COVID-19, the evidence indicates that higher-risk categories or vulnerable groups must be prioritized if the spread of the epidemic is to be mitigated. It is also critical to ensure the continued access to treatment for people living with HIV, NCDs, and other chronic conditions.
Physical distancing and other behavioral practices are currently the most effective public health measure to reduce the risk of transmitting COVID-19. Prisoners and those in closed settings such as detention centres and refugee camps are at heightened risk of contracting communicable diseases. Many prisons and closed settings are overcrowded, thus heightening the risk of acquiring COVID-19. Refugees, internally displaced people, migrants, mobile populations, and those living in informal, crowded settlements are also at much greater risk than the general population. The recent cases of disease among both detainees and guards, as well as prison riots and breakouts in a growing number of countries including Brazil, Colombia and Italy highlight the plight facing of those in closed settings. Some governments are taking steps to suspend all prison visits in a bid to curb the spread of the epidemic. Others are taking more public health-oriented steps. Iran, one of the countries hardest hit by COVID-19, is reported to have temporarily released as many as 85,000 prisoners in a bid to contain the spread of the pandemic. Corrections authorities in Ireland were said to be considering the temporary release of non-violent offenders incarcerated for minor offences. In some parts of the United States, law enforcement officials have taken to incarcerating only those accused of violent crimes as a public health measure.
According to the latest available evidence from WHO, up to 80% of people who acquire COVID-19 either remain asymptomatic or display mild symptoms, while still able to transmit the disease and infect others. The global response is therefore heavily reliant on trust, solidarity, and broad community engagement to ensure that the most vulnerable are protected. Undocumented migrants, asylum seekers who fear arrest, detention, or confinement are unlikely to seek health services unless they can do so without fear of reprisal. As with the AIDS and TB responses, safeguarding two core components of the right to health confidentiality and privacy, of individuals infected or most at risk will be critical to an effective response. Epidemics emerge along the fissures of our society, reflecting not only the biology of the infectious agent, but pre-existing structures of marginalization, exclusion, and discrimination. The insidious social pathologies of hate, racism, and xenophobia have the potential to exacerbate or even do more harm during a pandemic than the virus itself.[7] Governments should put measures in place to enable refugees and undocumented migrants to access healthcare without fear of detention or deportation and by putting in place protective and remedial measures for communities more likely to face such attacks and discrimination.
The gender dimensions of COVID-19 also require responses by governments, the international community, civil society, and the private sector. A combination of pre-existing biological and socio-cultural factors leave women and girls more impacted by certain elements of outbreaks such as COVID19.[8] Women frequently are the majority of the healthcare force in many settings. Interactions with emergency responders, and health governance structures also have gender dimensions.[9] National health systems often rely on, but fail to recognize women’s unpaid care work. This situation is exacerbated during infectious disease outbreaks, where responses rarely include adequate support for home-based care providers.[10] It is critical that governments respond to the gender dimensions of outbreak and pandemic responses in the design and implementation of COVID-19 interventions.
The underlying importance of transparency as a bedrock to effective COVID-19 responses
Transparency underpins many fundamental rights and freedoms necessary to a more effective COVID-19 response. These include the rights to information, participation, privacy, self-determination, dignity, health, to benefit from scientific progress, freedom of association and freedom from discrimination. Providing complete, transparent information was cited by the South Korean Minister of Foreign Affairs as a critical element to gaining and maintaining the public’s trust. This, together with public health measures such as some of the highest levels of testing by any country clearly aided the Government’s ability to reduce new infections from 900 a day in late February 2020 to as few as 75 a day by mid-March 2020. Ensuring that the public has access to clear, accurate, information and real time data on public health measures, such as the availability of testing and healthcare facilities, the actual number of tests being undertaken, as well the incidence of illness, mortality, and recovery are not just central to maintaining public trust and community adherence to medical guidance, but also to shaping an evidence-informed pandemic response.
In addition to providing information quickly and in a transparent manner to all segments of the population, taking into account linguistic, geographic and literacy barriers, the ability of governments, the international community, and the private sector to counter misinformation being disseminated through social media and other information and news outlets will be crucial. The AIDS and TB responses also contain lessons of how communities of people living with and affected by a disease or condition can play a pivotal role in COVID-19: misinformation can easily fuel stigma and discrimination, and aggravate the crisis, thus driving certain vulnerable groups away from seeking needed health services or to ignore sound medical advice. As COVID-19 is a relatively new strain of coronavirus, much remains unknown about its epidemiological characteristics. It is important for governments and the scientific community to be transparent about what is uncertain or unknown about the pandemic.
Transparency is as relevant to the right to health as it is to the right to benefit from scientific progress, as embodied in Articles 12 and 15 of the International Covenant on Economic Social and Cultural Rights. Transparency has increasingly been regarded as a critical enabler of both the innovation of and access to health technology (diagnostics, medicines, personal preventive equipment and related technologies). For example, the Helsinki Declaration on ethical principles for medical research involving human subjects underscores the importance of undertaking medical research only with the informed consent of research subjects.[11] The International Ethical Guidelines for Epidemiological Studies also recommend that epidemiological study results be made publicly available, and that unnecessary obstacles to research be removed. The sharing of accurate data and other information relevant to the availability, as well as the research and development (R&D) of diagnostics, vaccines, and medicines needed to prevent and treat COVID-19 is essential. The lessons learned from the Ebola outbreaks led WHO to develop guidance on managing a range of scenarios that present in infectious disease outbreaks. The guidance recommends information sharing (including rapid data), participation in international cooperation, and communicating with global stakeholders and other governments, as well as ensuring that human rights and ethical standards are observed during the emergency response to infectious diseases.[12]
There is a plethora of COVID-19 related clinical trials under way. These include trials for potential new treatments and vaccines, as well as trials involving the potential repurposing of a range of existing treatments for HIV, viral hepatitis, malaria, and other diseases, to assess the efficacy and safety for use in preventing or treating COVID-19 and related viruses. There have been a few encouraging signs of research and academic institutions moving towards greater transparency as efforts to develop effective therapies to prevent and treat COVID-19 intensify. In response to a request by scientists, at least 30 major publishers agreed to make publicly available, and reusable, all COVID-19 and coronavirus related publications and supporting data. This is an important and laudable step, but opportunities exist for more widespread and deeper collaboration. Governments, private and public sector researchers and biomedical companies, and philanthropic funders should hasten to make publicly available, non-traceable information and data on all ongoing, completed, and discontinued clinical trials, regardless of the results. Funders of COVID-19-related research as well as the recipients of such research funding should adopt provisions to facilitate and encourage the open-source sharing of COVID-19-related research through publication in open access, peer-reviewed literature.
Transparency during the innovation value chain can be a critical enabler of both future innovation and access, and there is opportunity for greater action here too. Information on patent and other market exclusivities is often difficult to obtain and verify, and reduces the capacity and speed of innovation, as well as the procurement of health technologies. Efforts by the Medicines Patent Pool to provide information on the patent status and licensing status of essential medicines to treat HIV, TB, viral hepatitis, and other diseases are starting to be expanded to some technologies relevant for COVID-19. Additional technologies should be added. The same could be said of the Industry partnership with the World Intellectual Property Organization. Greater transparency on R&D investments and costs, as well as the access policies and strategies of R&D funders and innovators, including Information on pricing, regulatory and manufacturing strategies, licensing terms and conditions, and technology transfer agreements, could also be an important accelerator for access to COVID-19 related technologies. One of the most important lessons from the AIDS response as noted by several bodies and reports is that world class biomedical innovation without the underlying principles and tools needed to guarantee universal access, and the commitment to deliver access, is a job only half done.
This pandemic is a public health and development challenge, but it is also an opportunity. All stakeholders—governments, international organizations, the private sector, civil society—have a responsibility to ensure we ground our efforts in principles of human rights and transparency. It’s a chance we cannot afford to miss.
Tenu Avafia leads the human rights, key populations and treatment access team at the HIV, Health and Development Group of the UN Development Programme’s Bureau for Policy and Programme Support in New York, USA.
Boyan Konstantinov is a policy specialist focusing on key populations and LGBTI persons with the HIV, Health and Development Group of UNDP’s Bureau for Policy and Programme Support in New York, USA.
Kene Esom is policy specialist focusing on human rights, law and gender with the HIV, Health and Development Group of UNDP’s Bureau for Policy and Programme Support in New York, USA.
Judit Rius Sanjuan is a policy specialist focusing on innovation and access to health technologies with the HIV, Health and Development Group of UNDP’s Bureau for Policy and Programme Support in New York, USA.
Rebecca Schleifer is an HIV, human rights, and law specialist consultant with the HIV, Health and Development Group of UNDP’s Bureau for Policy and Programme Support in New York, USA
References
[1] World Health Organization, Coronavirus (COVID-2019) Situation Reports. Available at https://www.who.int/emergencies/diseases/novel-coronavirus-2019/situation-reports
[2] “Achieving A Fair and Effective COVID-19 Response: An Open Letter to Vice-President Mike Pence, and Other Federal, State and Local Leaders from Public Health and Legal Experts in the United States.” (March 2, 2020). Available at: https://law.yale.edu/sites/default/files/area/center/ghjp/documents/final_covid-19_letter_from_public_health_and_legal_experts.pdf.
[3] Joint United Nations Programme on HIV and AIDS (UNAIDS), Rights in the time of COVID-19: Lessons from HIV for an effective, community-led response (Geneva: UNAIDS 2020). Available at https://www.unaids.org/sites/default/files/media_asset/human-rights-and-covid-19_en.pdf .
[4] Office of the High Commissioner for Human Rights and the World Health Organization, The Right to Health (Geneva: OHCHR 2008). Available at: https://www.ohchr.org/Documents/Publications/Factsheet31.pdf
[5] Two South African Constitutional Court judgements provide an insight into how a government’s obligations may be interpreted based on factors such as the availability of resources. In the South African Constitutional court case of Soobramoney v Minister of Health, 1998 (1) South Africa Law Reports 765 (CC), the costs of paying for kidney dialysis were found to exceed what could be reasonably expected of the state, whereas in the 2002 case of the Ministry of Health v the Treatment Action Campaign, 2002, 5 SA, 721 (CC), the State was ordered to provide “without delay”, nevirapine to pregnant mothers and infants to reduce the risk of mother to child transmission of HIV.
[6] World Health Organization (WHO), Consolidated Guidelines on HIV Prevention, Diagnosis, Treatment and Care for Key Populations – 2016 Update (Geneva: WHO, 2016). Available at https://www.who.int/hiv/pub/guidelines/keypopulations-2016/en/; There is no agreed definition of vulnerable or “most at risk” populations in the context of COVID-19, although healthcare workers, the elderly, pregnant women, people in prisons and other closed settings, those with serious pre-existing health conditions, migrant populations, internally displaced people, refugees, homeless people and those living in grossly inadequate housing, including those living in informal settlements and refugee camps, people with disabilities as well as stateless people may all be at greater risk of health impact. The overall economic and development impact may also include other vulnerable populations, including population without access to universal health coverage, paid sick leave and other social and economic protections.
[7] R. Horton, “Racism – the pathology we choose to ignore,” The Lancet, 390/10089 (2017), p. 14. Available at https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31746-4/fulltext .
[8] C. Wenham, J. Smith and R. Morgan (on behalf of the COVID-19 Working Group), “COVID-19: The gendered aspects of the outbreak,”The Lancet, 39/10227 (2020), pp. 846-848. Available at https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30526-2/fulltext
[9] J. Smith, “Overcoming the ‘tyranny of the urgent’: integrating gender into disease outbreak preparedness and response,” Gender & Development, 27/2 (2019), pp. 355-369. Available at https://www.tandfonline.com/doi/full/10.1080/13552074.2019.1615288
[10] J. Smith, “Overcoming the ‘tyranny of the urgent’: integrating gender into disease outbreak preparedness and response,” Gender & Development, 27/2 (2019), pp. 355-369. Available at https://www.tandfonline.com/doi/full/10.1080/13552074.2019.1615288
[11] World Medical Association (WMA), Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects (2013). Available at https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/. The Declaration also explicitly protects the life, health, dignity, integrity, right to self-determination, privacy and confidentiality of personal information of research subjects.
[12] WHO, Managing Ethical Issues In Infectious Disease Outbreaks, (Geneva: WHO,2016). Available at https://www.who.int/ethics/publications/infectious-disease-outbreaks/en/.