Neglected Population, Neglected Right

The laws, language, and tools of human rights have been instrumental in expanding access to lifesaving treatment for people living with HIV. Children, however, remain a neglected population, as evidenced by inadequate child-specific and child-friendly HIV treatment options. In this article, we explore the right to science, a potentially powerful but underdeveloped right in international law, and its application to research and development for pediatric HIV treatment. Drawing on reports of human rights bodies and scholars and applying the human rights typology of state obligations to respect, protect, and fulfill, we argue that states have five core obligations related to research and development for child-specific and child-friendly treatment: (1) adopting a public goods approach to science and science policy; (2) including and protecting children in research activities; (3) adopting legal and policy frameworks to support research and development through public funding and private sector incentives; (4) promoting international cooperation and assistance; and (5) ensuring the participation of marginalized communities in decision-making processes. In concluding, we make a number of recommendations for states, human rights bodies, international organizations, civil society, and private industry to further develop and implement the right to science. Michael L. Scanlon, MA, MPH, is a PhD student in the Department of Conflict Resolution, Human Security and Global Governance, McCormack Graduate School of Policy and Global Studies at the University of Massachusetts Boston, USA. Gillian MacNaughton, JD, DPhil, is an assistant professor at the School for Global Inclusion and Social Development at the University of Massachusetts Boston, USA. Courtenay Sprague, PhD, joint-MA, is an associate professor in the Department of Conflict Resolution, Human Security and Global Governance, McCormack Graduate School of Policy and Global Studies, and the College of Nursing and Health Sciences, at the University of Massachusetts Boston, USA. Please address correspondence to Michael Scanlon. Email: [email protected]. Competing interests: None declared. Copyright © 2017 Scanlon, MacNaughton, and Sprague. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted noncommercial use, distribution, and reproduction in any medium, provided the original author and source are credited. Health and Human Rights Journal HHr HHR_final_logo_alone.indd 1 10/19/15 10:53 AM m. l. scanlon, g. macnaughton, and c. sprague / HIV and Human Rights, 169-181 170 D E C E M B E R 2 0 1 7 V O L U M E 1 9 N U M B E R 2 Health and Human Rights Journal Introduction An estimated 1.8 million children under the age of 15 are living with HIV—over 90% of whom reside in sub-Saharan Africa—and 150,000 are newly infected each year.1 Strikingly, HIV is the second leading cause of death globally among older children (10 to 19 years of age) and the leading cause of death in sub-Saharan Africa.2 While AIDS-related deaths fell in all other age groups between 2005 and 2013, they increased by 50% among older children.3 Treatment for children living with HIV, particularly for those under the age of five, lags behind treatment for adults; there are fewer child-specific and child-friendly treatment options, fewer data on the safety and efficacy of existing medicines to inform treatment guidelines, and insufficient drug pipelines for new treatments.4 This has prompted some experts to refer to pediatric HIV as a “neglected disease,” defined as a disease that predominately affects populations in the developing world and that is typically overlooked by drug developers.5 The laws, language, and tools of human rights have been instrumental in responses to the HIV epidemic, particularly in supporting access to expensive lifesaving treatment for millions of people in the developing world.6 Human rights approaches, however, are underutilized in terms of promoting the need for new and better HIV treatment options for children. The right to enjoy the benefits of scientific progress and its applications (hereinafter abbreviated as “the right to science”) is a little known but potentially powerful human right that is explicitly recognized in both the Universal Declaration of Human Rights and the International Covenant on Economic, Social and Cultural Rights (ICESCR).7 While the specific obligations of states under the right to science remain underdeveloped, there is an emerging consensus among human rights bodies and scholars that the right to science obliges states to take specific actions, both domestically and internationally, to ensure that scientific research, funding, and policy address the rights and unmet health needs of all, particularly marginalized populations. In this article, we develop a framework to identify state obligations under the right to science, specifically obligations related to research and development (R&D) in areas such as pediatric HIV treatment. Using this framework, we show that many of the obligations laid out under the right to science address (either directly or indirectly) key shortcomings in the current R&D environment that ignore the needs of vulnerable populations around the world. Thus, we provide a novel rights-based perspective on why and how states and other actors should adopt a more just and equitable approach to biomedical R&D and scientific progress as a whole. Following this introduction, we review the current state of pediatric HIV treatment to show that children living with HIV, particularly those in low-income countries, have had and continue to have fewer treatment options compared to adults. The next section of the article locates the right to science in human rights law and presents a framework on the normative content of the right to science and state obligations. Then, we apply this framework to analyze the obligations of states to respect, protect, and fulfill the right to science, focusing specifically on those obligations related to R&D on pediatric HIV treatment. The final section makes five recommendations to support the development of the right to science and its implementation. Children living with HIV: A neglected population Since the beginning of the HIV epidemic, children have had fewer treatment options and faced worse outcomes than adults, due in large part to insufficient pediatric-specific R&D.8 In 2015, the World Health Organization (WHO) recommended for the first time that everyone diagnosed with HIV, including children, should immediately initiate lifelong treatment regardless of symptoms or clinical stage. Today, however, only 49% of children living with HIV are on treatment.9 In the absence of treatment, children born with HIV experience significantly faster progression to AIDS-defining illness and death compared to adults; more than half of children born with HIV will die within two years without treatment.10 Moreover, even children on treatment have lower rates of viral suppression m. l. scanlon, g. macnaughton, and c. sprague / HIV and Human Rights, 169-181 D E C E M B E R 2 0 1 7 V O L U M E 1 9 N U M B E R 2 Health and Human Rights Journal 171 (a clinical indicator of successful HIV treatment) compared to adults, which puts children at higher risk for drug resistance and HIV-related morbidity