Seminar Examines Barriers to Effective Democratization of the Right to Healthcare
“Since 1948, with the Universal Declaration of Human Rights, the history of human rights has increasingly become the history of the singularity of rights. Accordingly, the universal right to healthcare segues into health law, whereby the right to healthcare is no longer thought of as a principle to be achieved, but as a set of measures, governmental and non-governmental action plans, and various national and international agencies that are primarily aimed at protecting citizens in every situation fraught with a health risk.”
This explanation comes from Sérgio Adorno, dean of the School of Philosophy, Letters and Human Sciences (FFLCH) of the University of São Paulo (USP) and coordinator of the UNESCO Chair on Education for Peace, Tolerance, Democracy and Human Rights. Adorno was one of the participants of the opening session of the 10th International Seminar on Public Health Law: the Democratization of the Right to Healthcare, held on December 10, at USP’s Law School (FD).
Organized by the Center for Research on Health Law (NAP-Disa), the Center for Studies and Research on Health Law (Cepedisa) and the IEA-based UNESCO Chair, the seminar was part of the project Right to Healthcare and the Democratization of Public Health: Bridges to Citizenship, developed by NAP-Disa, bringing together professors and researchers from various USP units to investigate and analyze ways to ensure the right to healthcare in countries with significant levels of economic growth. The event had the support of the FD, the Federal Psychology Council, the Graduate Program in Political Science of FFLCH, and USP’s Center for Research in Populational Mental Health.
Another participant of the opening session, Sueli Dallari, professor at the School of Public Health (FSP-USP), founder of Cepedisa and president of USP’s Ethics Committee, stated that, at the individual level, social rights imply respect, prioritization and freedom, which should be considered simultaneously with the prioritization of community, equality and the right to development. For her, the challenge is for society to reconcile liberty, equality and fraternity.
Dallari also mentioned that the legal and judicial systems have difficulties to understand these contemporary rights, which are the same time individual, social and developmental. She highlighted the question of security versus freedom: “To what extent should we admit compulsory internment, quarantine and similar measures?”
The opening session was also attended by Paulo Borba Casella, deputy director of FD, Deise Maria do Nascimento, board member of the Federal Psychology Council, and Rossana Rocha Reis, from FFLCH’s Department of Political Science.
THE PANELS
Democratic public health
The topic of the first panel was Right to Healthcare and the Democratization of Public Health: Institutions and Legal Procedures for Societal Participation in Governmental Policy and Regulatory Decisions. The panel was led by Rossana Rocha Reis.
The first speaker was sociologist Amélia Cohn, from FFLCH, for whom the right to healthcare must be guided by the principle of public versus private – the latter being understood as the fragmentation of society into specific segments, e.g., the elderly, indigenous people, women, men, children etc. “Our tradition is a summation of private rights,” she said.
According to Cohn, society must think through an agenda, however long-term, by which public health rights, as any other right, are seen from a republican viewpoint. She proposes the development of a set of public policies and institutional frameworks that would enable the policies to actually have a universal character, aimed at the common good, in order to address differences while simultaneously promoting equality.
Difficulties to participate
For Francisco Aith, from USP’s School of Medicine, NAP-Disa and UNESCO Chair, the current political system, based on representativeness, is no longer capable of fulfilling the demands of the population. His account focused on the difficulties of implementing effective mechanisms for popular participation.
For Aith, public participation legitimizes norms, but he doubts current mechanisms for public participation help to ensure the people’s right to healthcare: “We need a critical analysis for these processes to become effective.” In his view, the judicialization of health [aka, health litigation] itself is a way of enabling popular participation and of pressuring governments to improve the quality of health services, although he believes the legal system hasn’t yet created the appropriate mechanisms.
Fraternal law
The panel’s third speaker was Sandra Regina Martini Vial, from the University of Vale do Rio dos Sinos (Unisinos), Rio Grande do Sul. She spoke about her research on a number of legal issues involving healthcare in Rio Grande do Sul. The background of her work is the metatheory of fraternal law, “which redeems, from the period of the French Revolution, fraternity and its premises of mediation, conciliation, covenant, nonviolence and, above all, pharmacology, with its notion that what can save can also kill.”
Among the cases her study analyzes are the closure of a psychiatric hospital in Porto Alegre in the 1990s, the Brazilians who seek medical care in Uruguayan and Argentinean border cities (due to the shortcomings on the Brazilian side and including the transfer of resources to foreign city governments), one mayor’s injunction to use herbal medicine, and access to the ceremonies of African-Brazilian religions to patients who so desire. The central objective of her research is to evaluate how the premises of fraternal law can be found in these situations.
Judicialization
The second panel was entitled The Role of the Judiciary in Enforcing the Right to Healthcare: The Judicialization of the Right to Healthcare and its Controversial Aspects, led by Sueli Dallari.
The first speaker was Celso Campilongo, from FD. For him, some of the difficulties law faces when dealing with certain health-related issues arise from new concepts that emerged in the last 20 or 30 years and have not yet been consolidated, such as “reserve of the possible” (the limitations the State is subject to when providing social rights), “existential minimum” (the set of goods and services essential for a dignified life) and “public policy.”
Campilongo believes the processes to build a legal theory always undergo changes that reflect the transformations wrought by social movements. However, he warns that, just as recent social movements often repudiate politics, law itself may end up losing its identity by trying to articulate an excessive number of other areas and by having lawyers start acting like very bad doctors, very bad engineers etc.
Poor debate
Jean Keiki Uema, a legal adviser for the Ministry of Health, said he notices extreme poverty in the judicial debate on public health law, a lack of reflection on social rights, and excessive superficiality. For him, the debate is basically bound to the terms of the beginning of article 196 of the Constitution: “Health is a right of everyone and a duty of the State.”
He said that legal operators are not familiar with concepts such as integrality, decentralization, regionalization , universality and equity. “The organization of the system is ignored, i.e., that there must be cooperation between all federal agents for the objectives to be achieved.” Moreover, he believes that judicial measures are overvalued, “as if they could, by themselves, guarantee access to healthcare, when this is the job of the SUS” [Brazil’s national health system].
Number of lawsuits
Luiz Rascovski, from the Public Defender’s Office of the state of São Paulo, said that, in the capital, health-related issues only lose in number to suits involving the lack of daycare centers. In the other 41 units in his Office throughout the state, however, health ranks first in number of lawsuits. He also reported that the requests for access to high-cost medications represent a large share of the lawsuits.
He disagreed with Jean Keiki Uema regarding the level of discussions in the Judiciary on health law: “Since 1988, the Judiciary has become much more mature, because healthcare has become a fundamental social right.”
Mediating role
Silvia Badim, from the Public Defender’s Office of the Federal District and a professor at University of Brasília, where she studies the public health centers of Ceilândia, said that the Judiciary is becoming an important channel for citizens’ participation, through which they seek to be heard. She mentioned that, in the Federal District, the Public Defender’s Office plays a mediating role through its Board of Mediation.
On questions regarding the reserve of the possible, she advocates a discussion of the limits of the right to healthcare, warning that healthcare “should never retrograde to the point of leaving a person without care when he or she does not meet the criteria of the health policy.”
Technical expertise versus participation
The theme of the third panel was Predominance of Technical Expertise versus Democratic Participation: How to Facilitate Participation in Political Decisions with High Density Technical Issues? The panel was led by Deisy Ventura, from USP’s Institute of International Relations (IRI).
The first exposition was by Henri Bergeron, scientific coordinator of the Health Chair at the Institut d’Études Politiques de Paris (Sciences Po), France. He talked about the work of the institute, which he defined as an interdisciplinary forum for dialogue on the development of public health policies.
Bergeron noted that the activities of the health professorship focus on four major areas: 1) discussing inequalities in access to healthcare among the French; 2) reflecting on the links between public health and economic activity; 3) drafting scientific reports on future trends and providing opinion on topics ranging from epidemiology to transformations in doctor-patient relationship; and 4) contributing to the development of national health security policies based on scientific evidence.
Plurality of opinions
Gilles Duhamel, also from Sciences Po and co-founder of the Health Chair, said that the French are hostages to legal instruments when seeking access to expensive drugs, whereas the ideal would be that such decisions were based on principles related to human rights, such as solidarity, equality and proportionality. He drew attention to the need to give more space to controversial issues, taking into consideration both opposing opinions among experts and potential conflicts of interest between experts and decision makers.
On participatory democracy in healthcare, Duhamel emphasized the asymmetries in doctor-patient relationships, which according to him insist on “the paternalistic model of information monopoly by health professionals.” He also criticized the tendency in France to address healthcare not from the perspective of citizens’ rights, but of their obligations: “There is a growing movement to make patients accountable for their behavior and for the health problems they develop.”
Public health emergency
The last speaker of the third panel, Claudia Madies, from Isalud University, Argentina, talked about the clashes between the predominance of technical expertise and democratic participation in terms of the International Health Regulations (IHR). Created by the World Health Organization (WHO) to enable coordinated international response to health emergencies on a global scale, the IHR establish a set of basic requirements that aim to make member countries better prepared to deal with emergencies.
According to Madies, the measures included in the IHR bring to light the question of democratic participation because they assume the creation of horizontal networks involving various spheres of power and a plurality of players not restricted to the body of experts. “In the case of an airport, for example, procedures should be adopted with the participation of employees, travelers, airlines and operators.”
Security and autonomy
The fourth panel, which addressed the topic Right to Healthcare and Individual Liberties: Public Health Security and the Autonomy of the Individual in a Democratic State, was led by Deise Maria do Nascimento.
Jarbas Barbosa, a health surveillance secretary of the Ministry of Health, also focused on the International Health Regulations in his exposition. He pointed out that the regulations are based on the principles of maximum protection with minimum inconvenience to the extent that they seek to reconcile the protection of public health and the protection of individual rights.
According to Barbosa, public health initiatives should be designed with the potential impacts on the economy and on daily life of the population in mind. As an example, he mentioned the tight controls in places where people enter and leave a country (airports, ports and borders). He said that this control is not only ineffective, but also violates individual rights by restricting the movement of individuals . “It is very difficult to prevent the entry of contaminants in a globalized world, so the best recommendation is to prepare to detect each case rapidly, as soon as they arise, as determined by the IHR,” he explained.
Regulation in the Americas
Larissa Paula Gonzaga e Castro, professor at the University of the Federal District (UDF), spoke about the implementation of the IHR in the Americas. WHO member states would have had to adapt themselves to the basic requirements by July 2012, when the document came into effect, but only six countries on the continent (17% of total) kept the deadline: Brazil, Canada, Chile, Colombia, Costa Rica and the United States. The other American countries asked for a two-year extension, which may be extended a further two years, so that by 2016 everyone will need to comply with the provisions of the IHR.
Gonzaga e Castro said that while the Pan American Health Organization (PAHO) points to advances in implementing the regulations, the 2016 deadline is unlikely to be met: “You cannot expect countries that fail to provide even basic public healthcare for their population to worry about their preparedness to handle health emergencies of international scope,” she said.
Individual rights and internment
Daniela Skromov de Albuquerque, a public defender of the state of São Paulo, closed the fourth panel with a presentation on the relationships between individual rights and public health in the case of compulsory internment of drug users (a policy being adopted in the capital cities of Rio de Janeiro and São Paulo as a way to remove consumers of crack from the streets). According to her, this forcible measure offends the dignity of addicts by depriving them of their right to self-determination and freedom, and “implies the idea of health protection as a duty, not as a right.”
By bringing to light the contraposition between the rights of drug users versus the citizens’ right to come and go (often evoked by members of society who support compulsory internment), Albuquerque stressed that it makes no sense to mete out rights, restricting those of some to expand those of others.
Photos: Rafael Borsanelli/IEA-USP