Human Rights Entitlement to Health: What Does It Mean in Practice and How Can It Affect Priority Setting for UHC? Parallel Session 1.4 The “right to health” is enshrined in the WHO Constitution. It is required under international law, notably in the International Covenant of Social, Economic, and Cultural Rights (ICSECR). And the right to health is found in the constitutions of many states, notably in India, Asia, Africa and Latin America, where it is also justiciable (subject to protection by the judiciary). As a result, in a growing number of cases, individual patients denied access to high-cost medicines and technologies under UHC have challenged this through courts of law, which have often, but not always, ruled in favor of those patients. In many other situations, citizens resort to courts to request access for medicines, services, technologies already included in the benefit basket of their country. The former cases speak to challenges to priority setting processes whereas the latter to shortfalls on the service delivery mechanisms. PS 1.4 1 Parallel Session 1.4 Background Objectives The session will aim to discuss country experiences and examples of litigation over access to treatments in countries like India, Brazil, Mexico, Colombia, Uganda, South Africa, and the United Kingdom, with a view to reflecting on potential implications for emerging economies looking to introduce entitlements to services such as the Indian National Health Assurance Mission. PS 1.4 2 Parallel Session 1.4 Moderator I Speakers I Panelists Moderator Siri Gloppen Research Director, CMR Michelsen Institute, Norway Speakers Leonardo Cubillos Physician and Researcher, Dartmouth College, USA Kola Odeku Ford Foundation Scholar, University of Limpopo, South Africa Mulumba Moses Executive Director, Center for Health, Human Rights and Development (CEHURD), Uganda Christian University, Uganda Anand Grover Senior Advocate, Supreme Court of India Director, Lawyer’s Collective, India Panelists Ruth Faden Executive Director, Johns Hopkins Berman Institute, USA Lawrence Gostin Founding O’Neill Chair in Global Health Law, Georgetown University, USA PS 1.4 3 Parallel Session Moderator I Speakers I Panelists 1.4 Moderator Siri Gloppen Research Director CMR Michelsen Institute Norway Siri Gloppen is Director of the Centre on Law & Social Transformation; Professor of Comparative Politics at the University of Bergen in Norway and Senior Researcher at the Chr. Michelsen Institute. In her research, at the intersection between law and politics she explores the use of law as an instrument of social change. Particular focus is on the role of law, courts and legal mobilization based on the right to health and sexual and reproductive rights. She has led several cross-regional research projects comparing the social and political role of courts in Africa, Latin America, and India. Her current research projects include: “Operationalizing the Right to Health in Service Delivery” (2013-2016); “Sexual and Reproductive Rights Lawfare “ (2014-18); “Political determinants of sexual and reproductive health: Criminalisation, health impacts and game changers” (2015-2020) and “Land Rights and Inclusive Sustainable Development in India” (2013 - 2016) Recent (collaborative) books include Litigating Health Rights: Can Courts Bring More Justice to Health (Harvard 2011); Climate Change Discourses, Rights and the Poor (Juta 2013); Juridification and Social Citizenship (E.Elgar, 2014). PS 1.4 4 Parallel Session Moderator I Speakers I Panelists 1.4 Lawrence Gostin Founding O’Neill Chair in Global Health Law Georgetown University USA Lawrence O. Gostin is University Professor, Georgetown University’s highest academic rank conferred by the University President. Prof. Gostin directs the O’Neill Institute for National and Global Health Law and is the Founding O’Neill Chair in Global Health Law. He served as Associate Dean for Research at Georgetown Law from 2004 to 2008. He is Professor of Medicine at Georgetown University and Professor of Public Health at the Johns Hopkins University. Prof. Gostin is the Director of the World Health Organization Collaborating Center on Public Health Law & Human Rights. The WHO Director-General has appointed Prof. Gostin to high-level positions, including the International Health Regulations (IHR) Roster of Experts and the Expert Advisory Panel on Mental Health. He served on the Director-General’s Advisory Committee on Reforming the World Health Organization, as well as numerous WHO expert advisory committees on the Pandemic Influenza Preparedness Framework, smallpox, and genomic sequencing data. He is a member of the WHO/Global Fund Blue Ribbon Expert Panel entitled, The Equitable Access Initiative to develop a global health equity framework. Professor Gostin serves on two global commissions to report on the lessons learned from the 2015 West Africa Ebola epidemic: Commission on a Global Health Risk Framework (National Academy of Sciences, supported by WHO, World Bank, Gates Foundation, and Rockefeller Foundation) and the Independent Panel on the Global Response to Ebola (Harvard University/London School of Hygiene and Tropical Medicine). Prof. Gostin holds a number of international academic professorial appointments: Visiting Professor (Faculty of Medical Sciences) and Research Fellow (Centre for Socio-Legal Studies) at the University of Oxford, United Kingdom; the Claude Leon Foundation Distinguished Scholar and Visiting Professor at the University of Witwatersrand, Johannesburg, South Africa; and the Miegunyah Distinguished Visiting Fellow and Founding Fellow of the Centre for Advanced Studies (Trinity College), University of Melbourne. Prof. Gostin served as PS 1.4 5 Parallel Session 1.4 Moderator I Speakers I Panelists Secretary and a member of the Governing Board of Directors of the Consortium of Universities for Global Health. Prof. Gostin holds numerous editorial appointments in leading academic journals throughout the world. His principal position is the Health Law and Ethics Editor, Contributing Writer, and Columnist for the Journal of the American Medical Association. He is also Founding Editor-in-Chief of Laws (an international open access law journal). He was formally the Editor-in-Chief of the Journal of Law, Medicine & Ethics. Prof. Gostin holds four honorary degrees. In 1994, the Chancellor of the State University of New York conferred an Honorary Doctor of Laws Degree. In 2006, Her Majesty Queen Elizabeth II and the Vice Chancellor awarded Cardiff University’s (Wales) highest honor, an Honorary Fellow. In 2007, the Royal Institute of Public Health (United Kingdom) designated Prof. Gostin as a Fellow of the Royal Society of Public Health (FRSPH). In 2012, the Chancellor of the University of Sydney – on the nomination of the Deans of the Law and Medical Schools – conferred a Doctor of Laws (honoris causa) in the presence of two Justices of Australia’s highest court—Justices Kirby and Haydon. Prof. Gostin is an elected lifetime Member of the National Academy of Medicine (formerly Institute of Medicine), National Academy of Sciences. He has served on the National Academy’s Board on Health Sciences Policy, the Board on Population Health and Public Health Practice, the Human Subjects Review Board, and the Committee on Science, Technology, and Law. He chaired the National Academy’s Committee on Global Solutions to Falsified, Substandard, and Counterfeit Medicines. He has chaired National Academy Committees on national preparedness for mass disasters, health informational privacy, public health genomics, and human subject research on prisoners. The National Academy of Medicine awarded Prof. Gostin the Adam Yarmolinsky Medal for distinguished service to further its mission of science and health. He received the Public Health Law Association’s Distinguished Lifetime Achievement Award “in recognition of a career devoted to using law to improve the public’s health” presented at the CDC. The New York Public Health Law Association conferred the Distinguished Lifetime Achievement Award for extraordinary service to improve the public’s health. Prof. Gostin is also a lifetime elected Member of the Council of Foreign Relations (providing independent advice to governments on foreign policy) and a Fellow of the Hastings Center (for bioethics and public policy). PS 1.4 6 Parallel Session 1.4 Moderator I Speakers I Panelists Internationally, Prof. Gostin received the Rosemary Delbridge Memorial Award from the National Consumer Council (United Kingdom) for the person “who has most influenced Parliament and government to act for the welfare of society.” He also received the Key to Tohoko University (Japan) for distinguished service for human rights in mental health. Prof. Gostin has led major law reform initiatives in the U.S., including the drafting of the Model Emergency Health Powers Act (MEHPA) to combat bioterrorism and the “Turning Point” Model State Public Health Act. He is also leading a drafting team for the World Health Organization and International Development Law Organization, Advancing the Right to Health Through Public Health Law. Prof. Gostin’s proposal for a Framework Convention on Global Health – an international treaty ensuring the right to health – is now part of a global campaign, endorsed by the UN Secretary-General and Director of UNAIDS. In the United Kingdom, Lawrence Gostin was the Legal Director of the National Association for Mental Health, Director of the National Council of Civil Liberties (the UK equivalent of the ACLU), and a Fellow at Oxford University. He strongly influenced the current Mental Health Act (England and Wales) and brought several landmark cases before the European Court of Human Rights. Prof. Gostin’s latest books are: Global Health Law (Harvard University Press, 2014; Chinese Translation Due in 2016)); Public Health Law: Power, Duty, Restraint (University of California Press, 3rd ed. Forthcoming 2016); Public Health Law and Ethics: A Reader (University of California Press, 2nd ed., 2010); Law and the Health System (Foundation Press, 2014); Principles of Mental Health Law & Practice (Oxford University Press, 2010). Paul Farmer, Partners in Health, says of his latest book: Global Health Law is “more than the definitive book on a dynamic field. Gostin harnesses the power of international law and human rights as tools to close unconscionable health inequities — the injustices that burden marginalized populations throughout the world. Gostin presents a forceful vision, one that deserves a wide embrace.” In a 2012 systematic empirical analysis of legal scholarship, independent researchers ranked Prof. Gostin 1st in the nation in productivity among all law professors, and 11th in in impact and influence. PS 1.4 7 Parallel Session Moderator I Speakers I Panelists 1.4 Anand Grover Senior Advocate, Supreme Court of India Director, Lawyer’s Collective India Anand Grover, is a designa ted Senior Advocate, practicing in the Supreme Court of India and the Director of the Lawyer’s Collective (India), having offices in Mumbai, Delhi and Bangalore. He was the UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health (Right to Health) by the UN Human Rights Council from 1 August 2008 to 31 July 2014. Anand Grover is a well-known long-time advocate and activist on HIV and human rights. He has argued many cases relating to the rights of people living with HIV, including the first HIV case in India relating to employment law, on sexual diversity, including the case which decriminalized same sex in the Delhi High Court, and the Supreme Court, (the Naz Foundation case) now pending decision, (the NALSA case relating to recognition of transgender identity), cases relating to women in respect of employment, sexual harassment at the workplace etc., patent cases to make medicines accessible in India, and the developing countries, including the Novartis (relating to patentability criteria and the cancer drug Gleevec) and the Natco case (relating to compulsory license of the cancer drug, Nexavar) cases relating rights of sex workers and persons who use drugs, on tobacco use and information relating to the same, death penalty for drug users. He has recently been appointed as the Special Public Prosecutor to conduct the prosecution in the 2G case, one of the biggest anti corruption cases in India. He has spoken and at the national, regional international conferences. He presented the Jonathan Memorial Lecture at Toronto Conference on HIV/AIDS. PS 1.4 8 Parallel Session 1.4 Moderator I Speakers I Panelists Mr. Grover has worked closely with UNAIDS on HIV-related rights and law issues for many years and has been a valuable resource for it. In this regard, he has served on the UNAIDS Reference Group on HIV and Human Rights which advises UNAIDS Executive Director, Michele Sidibe, on how it can strengthen the commitment and capacity of governments, civil society and the private sector to protect and promote human rights in relation to HIV. At the request of the Government of India, Anand Grover and the Lawyers Collective drafted the HIV Bill, which is pending with the Government. He was the member of the drafting group of the International Guidelines on Human Rights & HIV/AIDS and a member, National Board, AVAHAN, the India AIDS Initiative, Gates Foundation, Board Member of International AIDS Vaccine Initiative, the Reference Group on Human Rights to the Executive Director, UNAIDS, National Advisory a member of the World Care Council, a member of the Core Group of NGOs representatives in the National Human Rights Commission of India and the member of the National Advisory Board on HIV and AIDS set up the Prime Minister of India. He is presently a member of Global Commission on Drug Policy and member of the Lancet-University of Oslo Panel on Global Governance of Health. In August 2008, Mr. Grover took over from Paul Hunt, as the UN Special Rapporteur on the Right to Health for a period of six years. He has submitted eleven reports to the UN Human Rights Council (HRC) and the UN General Assembly on i) TRIPS, Patents, FTAs and the Right to Health; ii) Informed Consent and the Right to Health, iii) Criminalization of HIV transmission, same sex relations and sex work and the Right to Health iv) Criminalization of Drug use and the Right to Health; v) Development and Right to Health; vi) Elderly Persons and the Right to Health; vii) Right to Sexual and Reproductive Health and Criminalization; viii) Access to Medicines and the Right to Health; ix) Occupation Health; x) Health Financing and xi) Migration and Health; xii) Conflict and Health; xiii) Promotion of Unhealthy food and health and xiv) Evaluating the Right to Health. He has also undertaken nine countries missions, to Poland, Australia, Guatemala, Syria, Ghana, Vietnam, Azerbaijan, Tajikistan and Japan and submitted reports of his missions to the HRC. PS 1.4 9 SHORT PAPER 1.4 PS 1.4 14 Parallel Session SHORT PAPER 1.4 The International Right to Health: What does it mean in practice and how can it affect priority setting for Universal Health Coverage? Leonardo Cubillos, Lawrence Gostin, Kalipso Cubillos, Ryan Li Health Systems & Reform supplement for PMAC2016: Abstract The international human right to health is enshrined in the World Health Organization Constitution. It is required under international law, notably in the International Covenant of Social, Economic, and Cultural Rights (ICSECR). The right to health is also found in the constitutions of many states, notably in India, Asia, Africa and Latin America. In many countries, the right to health (or to a safe environment or to life, which are also in national constitutions) is justiciable, meaning that national courts can interpret its provisions. As a result, in a growing number of cases, individual patients denied access to high-cost medicines and technologies under Universal Health Coverage (UHC) systems have challenged the denial of access. Often, but not always, the courts of law have ruled in favor of those patients. In many other situations, citizens resort to courts to request access for medicines, services, technologies already included in the benefit basket of their country. The former cases speak to challenges to priority setting processes whereas the latter to shortfalls on the service delivery mechanisms. This article will examine judicial decisions that require access to products not currently on a government’s list of essential medicines. It will explore the tension between an individual’s claims to high-cost drugs as a human right against society’s attempts to serve the whole population. Should the right to health be construed as an individual entitlement or a collective good? Under what circumstances should courts uphold the right of access to medical products and using what criteria? These questions highlight the challenges associated with growing demand for medical services and the finite budgets allocated for for UHC. Many states have sought to introduce explicit and evidence-informed mechanisms of priority-setting such as health technology assessment. Should these evidence-based population-based tools supplant litigation over the right to health or can the two co-exist, and why? What is their potential going forward? Can a rights-based approach inform and potentially strengthen prioritization? Finally, what lessons can be offered to countries navigating these difficult waters of political economy and ethics, where health, finance and social security policymakers, courts of law, and interest groups (including the pharmaceutical industry as well as patient advocacy groups) intersect? PS 1.4 15