Report from the Working Sessions
International Strategy Meeting on Economic, Social and Cultural Rights and ESCR-NET General Assembly
December 1 - 4, 2008
To download the report, click here.
SUMMARY OF WORKING SESSIONS ON
THE RIGHT TO HEALTH
The International Strategy Meeting on Economic, Social and Cultural Rights, organized by ESCR-Net in Nairobi, Kenya from December 1-4, 2008, allowed a critical mass of Network members to come together to discuss achievements, obstacles and set priorities for the Network for the coming years. The working sessions on the Right to Health were developed in response to interest and input of members and geared toward providing space for new project ideas and alliances to emerge.
The first session provided an overview of the field conceptually, as well as discussing view points of working in the field from various perspectives. Sessions 2 focused on possibilities for monitoring and implementation on the right to health, while session 3 highlighted two critical health issues: HIV/AIDS and maternal mortality. Session 4 discussed the emerging issue of access to medicine in light of increased globalization and intellectual property agreements. Session 5 looked at the adequacy of healthcare systems from various perspectives including people with disabilities. Finally, Sessions 6 and 7 provided a space for participants to develop ideas for possible future collaborative action. Participants formed a Steering Committee to carry forward the work of this group and decided to focus on the issue of access to medicine.
1. Moderator and Introduction, Alicia Ely Yamin, Joseph H Flom Fellow on Global Health and Human Rights, Harvard Law School, USA [power point presentation available]
Alicia gave an overview and introduction to the session. She started by telling a story that would aid in answering the question, of what does human rights add to health issues. The story was about Evarista and Alejandro a couple who were poor. Evarista felt that she had been mistreated by the workers at the nearest health post, who did not speak her language, and treated her badly because she was indigenous and came from a poor area. She started to have labor pains at home and delivered her baby, however, her husband realized that something was wrong and sent his eldest son to get help. There was no means of transportation and when the son arrived at the health post, he woke up the doctor and the midwife, who decided not to respond and instead send an attendant. The hospital did not have a van or any means of transport. By the time they arrived to the house, Evarista was dead. The health workers blamed the husband for failure to bring his wife to deliver at the health post. They decided to punish Alejandro, by not vaccinating the baby, and not giving her a birth certificate without a fine, so the baby had no access to government benefits. [Note: this case is taken from Alicia Ely Yamin, Deadly Delays: Maternal Mortality in Peru. A Rights-Based Approach to Safe Motherhood. Physicians for Human Rights, 2007].
What does a human rights approach add to health? What human rights add depends on the understanding of the underlying health conditions. Most major health-related issues are broadly affected by living conditions. However, the overwhelming majority of obstetric complications are neither predictable nor preventable, but are treatable with access to simple interventions. Therefore, maternal mortality is a very sensitive indicator of the status of a health system.
Deborah Maine and colleagues developed the 3 Delays Model. It established that the great majority of pregnant women die because there is a delay in (1) deciding to seek care (2) arriving to care (3) receiving adequate care when a facility is reached. International human rights law establishes that States have the obligation to make health care facilities and services: available, accessible, acceptable and of adequate quality (AAAQ). What human rights add is that health is not about a technical approach only, but a matter of political and legal entitlement. It needs individual, institutional, systemic and structural approaches. Other principles the human rights approach adds are: The obligation to spend up to the maximum available resources; the principle of non-retrogression and adequate progress; equality and non-discrimination; accountability; meaningful participation and international assistance and cooperation.
In terms of equality and non-discrimination, we need to look beyond individual instances of discrimination to patterns of exclusion. We may get a greater effect for lesser money in several approaches, but the human rights approach tells us we need to focus on the minorities as well. Without accountability, human rights are an empty venture. Accountability needs to go beyond individual sanctions. In health systems with punitive approaches to health care, even the health workers are subjected to punitive measures. These punitive measures eventually undermine the working and efficiency of the health systems. There are political, social and institutional dimensions to accountability. Accountability towards effort and resources: in 2006, Peru spent 4.8% of national budget on health; .9% of GDP, a meager amount. Even the World Bank had asked Peruvian government to increase spending on health.
Accountability towards non retrogression and adequate progress: Adequate progress is measured, using indicators - both of process and outcome. Accountability for the national plan of action needs both evidence based information and full participation. Meaningful participation requires more than tokenistic consultation, it means participation of people directly affected by policy decisions and programs. With regards to international assistance and cooperation, many States in the Global South are not in a position to comply with their obligations in relation to the right to health so we need to take into account available international assistance and cooperation to understand what resources are available. Therefore, human rights add two dimensions: normative and empirical. Health is a matter of fundamental justice, and a human rights approach can undermine inequalities.
2. The Perspective of a Special Rapporteur, Anand Grover, Lawyers Collective, India and UN Special Rapporteur on the Right to Health [Power point presentation available]
The right to health is fairly well established under international law, in several UN human rights instruments and treaties, as well as in the 3 regional human rights systems. Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) which best articulates the right to health establishes: "The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health." Article 12.2 enumerates non-exhaustive examples of state parties' obligations: (1) the provision for the reduction of the stillbirth rate and of infant mortality and for the healthy development of the child; (2) the improvement of all aspects of environmental and industrial hygiene; (3) the prevention, treatment and control of epidemic, endemic, occupational and other diseases; and (4) the creation of conditions which would assure to all medical service and medical attention in the event of sickness."
A number of jurisdictions, both civil and common law, either explicitly provide for the right to health in their constitutions or have interpreted an inter-related right (like the right to life) as including the right to health. In domestic jurisdictions the right to health is protected only in 63 of 184 countries of which data is available. The right to health has been further elaborated in General Comment 14, specifically: (1) social determinants: poverty, inequality, water, sanitation, food, discrimination (gender, race, sexual orientation etc); (2) freedom (from non-consensual treatment, torture and cruel treatment) and entitlements (Access to medicines); (3) essential elements: availability, accessibility, acceptability, quality; (4) obligations of the state to respect, protect, and fulfill rights; and (5) the core minimum obligations.
If the right to health is recognized internationally, why is it not being realized? ESCR are seen as progressive, and subject to progressive realization. Many countries do not believe that ESC right are individual rights and therefore cannot be enforced in a court of law. Many countries, India amongst them, have incorporated a mandate of ESCR within enforceable rights like the right to life.
Monitoring mechanisms have been created and been useful for direct violations of civil and political rights. Such mechanisms do not adequately deal with more complex rights, like the right to health. The right to health is complex as it is both an individual and collective right and its realization is mediated by other determinants-e.g. adequate sanitation, water etc. One way to overcome this is to deconstruct the right to health through development of categories (indicators) at a theoretical level based on empirical evidence. This is extremely useful and has to be developed further. The question is how do we understand the right to health holistically and realize it. For international purposes, indicators are always framed by external observers who see health systems from outside. We need a paradigm shift, from an external to an internal observer point of view. Reality needs to be cognized from the perspective of the internal active participant, if it is to be understood holistically and if it is to be effectively realized.
HIV/AIDS is a prime example of the way there has been change in the containment of the epidemic, due to community mobilization (not purely NGOs). The HIV community formed networks and became part of the decision making, implementing and monitoring processes of ensuring that their rights were met. This implies investment in the community, financing networks, capacity building, so that communities are not token representatives but effective representatives. They were able to demand and secure access to medicines and to bring about a shift in the financial architecture of funding medicines. The Global Fund for TB, Malaria, and HIV/AIDS was set up. This Fund proved to be different as the community demanded that funds be used for the purposes they were intended to serve.
In relation to funding mechanisms, vertical funding has been criticized, but it is necessary to ensure delivery to those who need services and medicine. In HIV funding, lots of HIV positive people sit on the board of relevant institutions and this has helped. The HIV community incorporated rights and evidence based approaches. This facilitated application of consent for testing, confidentiality, and non discrimination to people living with HIV/AIDS, so that their rights are not violated. They also empowered marginalized groups such as sex workers to negotiate safe sex practices with their clients, in order to prevent the transmission of HIV to their spouses. It was the community involvement at all levels from the decision making to implementation of strategies that there was a change in HIV. It is the involvement of the community that needs to be incorporated at all levels if the right to health is to be effectively realized.
3. An International Campaign on the Right to Health, Michelle Kagari, Amnesty International, UK [Power point presentation available]
Amnesty International is launching its Dignity Campaign in May 2009. AI's position and argument is that poverty is not inevitable; it is the result of decisions made by governments, corporations and others in power. Poverty is a human rights violation in itself and attracts other violations, causing abuses to be perpetuated. The human rights framework provides an angle for arguing against these violations, and a model to provide sustainable solutions. It also provides specific legal guarantees to address deprivation, combat discrimination and inequality, and promote the participation and empowerment of people. The human rights framework also brings a system of accountability for states and non-state actors whose decisions and actions affect the lives of poor people.
The main rights the campaign will focus on include: (1) Rights related to deprivation: rights to fulfill the basic needs essential for a dignified life - food, shelter, healthcare and education; (2) Rights related to insecurity: right to physical security - protection against state and non-state violence (police brutality, gender violence, gun violence) that affect the poor disproportionately; rights promoting the security of livelihood -social security, security of tenure, security of livelihood; (3) Rights related to exclusion: right to non-discrimination and equality, particularly for women given the disproportionate impact of poverty on women; and (4) Rights related to "voicelessness": participation rights - civil and political freedoms, right to information and issues around good governance such as transparency. The campaign will seek changes in policy and in reality through a three-fold approach: accountability of national and international (state and non-state) actors for the human rights abuses that fuel poverty; access to equal rights and services essential to human dignity; and active participation of poor people and their representatives in combating poverty.
Legal empowerment: "making law work for the poor" will be a cross-cutting dimension which is equally relevant to accountability, access and active participation. We will pursue legal empowerment through policy changes as well as practical measures, including: development of human rights standards (e.g. on corporate accountability); implementation of human rights law (e.g. Optional Protocol to the ICESCR); litigation of economic, social and cultural rights in national and international jurisdictions; and removal of practical obstacles to justice for poor people, e.g. legal literacy to empower people, paralegal services, legal aid and ending corruption in the judicial system.
Amnesty International will focus on five global demands initially (2009-2010): (1) at the 2010 UN Development Summit, governments must report on human rights in relation to MDGs and AI will demand that all governments publish disaggregated data on all MDGs so that the (lack of) progress of marginalized groups is made "visible" and the UN must adopt a more effective, human rights focused initiative to eradicate poverty after 2015 (when the MDGs end) and will be called Everyone Counts; (2) ratification and implementation of the Optional Protocol to ICESCR; (3) maternal mortality, specifically equal access of women to emergency obstetric services; (4) slums and forced evictions; and (5) corporate/extractive industry, with regards to global rules on corporate responsibility for human rights and promotion of robust human rights safeguards and transparency measures by extractive industry companies in their operations.
The work related to health will focus on a global call to ensure equal access of women to emergency obstetric services. The campaign is looking at different scenarios and Amnesty is interested in receiving some feedback on whether the Campaign is looking in the right direction. One scenario is that adequate services exist but women are impeded from access to services either when arriving at the facility or denied access to services at the facility. Possible rights-related factors to this include:
- Inadequate government support for effective referral and transportation systems related to emergency obstetric services; geographically marginalized women are most affected by this inadequacy;
- User fees for services are prohibitive for poorest women;
- Cost or difficulty of transportation is prohibitive (whether women are geographically marginalized or not);
- Husbands or others in the household or community keep women from seeking or using services;
- Poor, minority or socially marginalized women present at the facility but are not offered some or all services or are otherwise excluded or mistreated; or
- Women have inadequate information and support to be able to insist on access to services once they present at the maternity facility.
Research is currently taking place in Liberia and Burkina Faso and it is revealing that once a woman is pregnant there are various scenarios: (1) services exist and are accessible but women choose not to use them. This could be because women have inadequate information about obstetric services that exist; women's choices are influenced by misinformation, or sometimes women fear mistreatment, cultural inappropriateness, discrimination or cost; (2) services exist and are accessible (in principle) but are of poor quality, which could be the result of insufficient trained personnel to administer services, insufficient supplies of emergency medicines, insufficient maintenance of equipment, etc, personnel mistreat some or all women who seek services, discrimination against some categories of women in administration of services, services are culturally inappropriate for some or all women, or inadequate monitoring or record-keeping that could contribute to holding health professionals accountable and monitoring maternal death and injury at facility level; inadequate oversight from health authorities; (3) the woman lives in a place where emergency obstetric services exist with (in theory) adequate numbers of trained professionals to administer the services; or (4) the woman lives in a place without reasonable access to emergency obstetric services (even if there were good referral systems and transportation) and this could be because the government recognizes the problem and has good strategies to address it but needs international financial or technical assistance that is lacking (responsibility of wealthy countries is a human rights issue) or the government needs to recognize the problem of maternal death and injury and develop strategies and plans to address it - here communities may play an important role in advocacy toward the critical level of recognition, and international technical support may help.
Research has been carried out in South Africa exploring the link between women's rights and in particular violence against women and HIV/AIDS and the numerous barriers poor women experiencing violence and who are HIV positive face when trying to access health care. One key campaign objective as a result of AI's research, is to ensure access to transport facilities as this was identified as a major barrier to accessing health facilities. Another campaign objective linked to transport is to get health workers to prescribe the post exposure prophylaxis (PEPS's) in amounts that would mean that the women would not have to go back to the clinic each weak for new doses. AI intends to carry out similar research in Swaziland this year.
4. National-Level Perspective on the Right to Health, Raymond Onyegu, Social and Economic Rights Initiative (SERI), Nigeria [complete presentation available]
Socio Economic Rights Initiative (SERI) is an NGO established on 1995 to promote due process and basic standards in economic, social and cultural rights. The organization came into being to act as a citizens' watchdog in holding the government accountable to its commitments at the 1993 Copenhagen Conference on Social Development, the 1994 Beijing Conference on Women's Rights and, especially, under the International Covenant on Economic, Social and Cultural Rights (the "Covenant"). The Health Action Program of SERI, articulates health as a basic human right and seeks measures for its realization through: (1) forging partnerships between the government, civil society and the private sector; (2) sensitizing local communities and community based organizations on the inseparable link between housing, the living environment and the health of their inhabitants; and (3) empowering the citizens on the strategies for ensuring and enhancing health in human settlements.
Soon after SERI came into being, they were introduced to the Centre on Housing Rights and Evictions (COHRE), Geneva. Through COHRE, the organization was exposed to the work of the Committee on Economic, Social and Cultural Rights and several staff of the organization began to attend professional internships with several established and reputable international human rights organizations, such as FIAN and Interights. Staff also attended short-term certificate courses at the International Institute for Human Rights, Strasbourg, France and Canadian Foundation for Human Rights. Soon SERI began to target governments in Nigeria, their institutions and agencies; non-state actors; intergovernmental organizations such as the African Union; international financial institutions, and the UN human rights system through advocacy to influence policies at the local, national, and regional levels. It was granted Observer Status with the African Commission on Human and Peoples Rights. That early exposure also signaled the beginning of a strategy of utilizing the tools of litigation, investigations, action reports on human rights abuses, and networking. Their activities on the right to health include interventions in social determinants of health, HIV/AIDS, children's health, mental health, reproductive health, infectious disease and internally displaced populations.
SERI has been working with rural and urban slum dwellers, trained high court judges and magistrates, submitted Parallel Reports to the ESC rights Committee in Geneva, and built a network of lawyers that provides legal services on ESC rights, including the right to health. Other actions of the organization include: human settlements and health education workshops, immunization education, community organization and mobilization, and practical interventions in water and sanitation in the city of Lagos. SERI also provides rights awareness training programs for people living with HIV/AIDS to address several key issues. The organization is also in the process of developing a Nigerian specific manual for the training of people living with AIDS and other people living with disability in basic human rights provisions. It also has a Health Rights Network list serve dedicated to providing urgent alerts and serves as information sharing exchange for stakeholders. HAP has undertaken media campaigns to promote healthy life styles through the print and electronic media; stickers and posters on the program theme have been printed and widely distributed. The program also has several publications.
The Health Budget Intervention is focused on health budget and seeks to empower civil society to analyze health policies and their link to practical budgetary matters. It gives local communities a greater voice in the design and management of health projects and the tracking of health budgets reforms. SERI has, since year 2000, been facilitating series of civil society-government interface that integrates a socio economic analysis of health budgets implementation with legal analysis of international human rights standards.
5. Questions and comments following presentations
- A question was asked of whether people living with HIV/AIDS were categorized with people with disabilities. This participant also suggested that the Amnesty Campaign include people with disabilities who are usually forgotten. He also asked if ESCR-Net was working on disability issues.
- On HIV positive people and people with disabilities, it is vital that they are identified as individual components, but they are related.
- Alicia was asked to expand on how accountability models can translate into perverse incentives.
- It is not that health professional should not be held accountable for their actions. Alicia explained that she has seen incredible incompetence or lack of care from health professionals. However, focusing only on the individual providers does not change the systemic or institutional problems which perpetuate the behaviors. For example the midwife who goes home perhaps can't be expected to be in call 24 hrs. In some cases health workers are frustrated because they do not have the means to help patients, they have to use their own money to buy medicine. Constructive accountability by Lynn Friedman, speaks on entitlement and obligation. We really want to establish a new dynamic of entitlement and obligation.
- A comment was made that the Amnesty campaign should look at ensuring governments pay attention to rural areas.
- A suggestion was made that we should look at how to create health facilities near the women and how to train the health workers to be patient and friendly as opposed to improving transport facilities.
- On health facilities near homes, there are indicators on how many health facilities should be near homes. These public health guidelines need to be used when we argue our cases. We should argue based on the recommended standards needed to address public health problems. And we should argue with the World Bank or the Regional Development Bank who are the ones providing the funding on health care sector.
- Government hospitals at district level have tendencies to ask for money for transport. They make referral to private hospitals, which are too expensive, as opposed to government hospitals. A lady needed caesarean section, since district hospital personnel and provincial personnel, have animosity, they refer to private facilities, which are too expensive.
- There are problems also in the district hospital in Marsabit, which is one of the largest in Kenya. Accessing people is hard. People have high levels of illiteracy, they are nomadic. Many children die and there may not be anyone to burry.
- Most of the doctors have private clinics, to which they prefer to refer people. Government doctors do not care, they even refuse to get out from their homes to attend a medial situation. A boy died after being shot twice and waited for two hours before help. Pushing for the right to service from the nurses may even lead you to never receive the help. Punitive measures may even be applicable. International organizations should focus on the really marginalized communities.
- To this last comment someone pointed out that it is important to understand that we are working with a human rights framework. We should work with States and with duty bearers. However, there are hierarchies of the duty bearers, so you cannot hold the doctors accountable because he is a claim holder to the health minister. We should talk about rights and obligations a supposed to entitlement, so as to put it under the context of international law.
On indicators: The aim of indicators is to allow multilateral funders to direct funds. ESCR are progressive. The only problem with them is that they reflect the opinions of the passive external observers and opposed to active internal observer. We have to achieve all the indicators to show the progression.
Moderator, Mutuma Ruteere, Hakijamii Board Member, Kenya
1. Advancing the Right to Health at the National Level, Juana Sotomayor, Office of the High Commissioner for Human Rights, Geneva
2008 is a year of many celebrations. The Office of the High Commissioner for Human Rights is celebrating the 60th anniversary of The Universal Declaration on Human Rights. For the office and the High Commissioner, it is important to highlight the indivisibility of all human rights in the context of these celebrations. One important message of the OHCHR is that we are speaking about a whole when we speak about human rights. Another important celebration is that of the Quito Declaration. 10 years ago, it was drafted through a very special NGO driven initiative. It was a landmark for the understanding of ESCR. We have come a long way and now we can speak about an Optional Protocol to the ICESCR when 10 years ago that was only a dream.
A little bit of the history behind the presentation is that in 2005, several of the treaty body committees requested the OHCHR to develop a system of indicators to help the members of the treaty body Committees to help in their task to supervise the compliance with different human rights treaties. The OHCHR was very happy to receive this request as it provided an opportunity to look closely at human rights standards and build a tool that could be useful for Committee members, third parties and also for NGO's and other actors. In 2008, the OHCHR produced a report on indicators which includes 12 human rights (6 civil and political rights and 6 ESCR). The same standard and methodology was used for all rights. These indicators are still in draft and are a work in progress. There is a matrix that looks at 3 different elements and the idea of those who worked in the matrix was to come up with very specific examples on the sort of issues that States, NGOs and committee members could be looking at in the national level and at could be relevant for human rights.
Looking at the chart (google it: HRI/MC/2008/3) (accessible on page 25), we see there are 5 columns (called attributes) and they indicate key areas in which the right to health should be analyzed (sexual and reproductive health, child mortality etc). Then they have 3 types of indicators: Structural, Process and Outcome indicators.
For all human rights, including civil and political rights, we have to look at the progress States are making to fulfill their obligations without discrimination to any group. The process indicators are also relevant and the outcome indicators give examples of type of indicators that would be relevant. Juana wanted to highlight that these are the type of tools that allow us to move forward in relation to international human rights law. There is criticism that human rights law is vague, but these provide very concrete guidelines.
Treaty body members of different committees have looked at this matrix and have made recommendations and comments. However, they are glad to see that, for example, indicators that reflect to the right to health also come out in other charts and that the same methodology has helped to clarify the content of ESCR and civil and political rights. On some occasions treaty body members are flooded with information that is not always relevant. It is very important to help different actors in the human rights movement to provide data that will show if progress has been made in the fulfillment of human rights, if the most vulnerable people are being protected, and if this data can be reliable, comparable and consistent over time. Finally, Juana explained that her personal opinion is that the matrix could also be helpful for NGOs or social movements to develop strategies as it might be easier to identify whether budget measures or public policy measures, legal protection or some other type of strategy should be called for.
2. Assessing the Right to Health for Women in Kenya, Grace Maingi-Kimani, Federation of Women Lawyers (FIDA), Kenya. [Power point presentation available]
FIDA Kenya or Federation of Women Lawyers is one of the largest women's organizations in the country. The Health Rights of Women Assessment Instrument (HeRWAI) is a strategic tool to enhance lobbying activities for better implementation of women's health rights. The HeRWAI analysis takes a human rights approach and is based on the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) and the International Covenant on Economic, Social and Cultural Rights (ICESCR). A HeRWAI analysis links what actually happens with what should happen according to the human rights obligations of a country. It examines local, national and international influences.
The HeRWAI impact assessment can be used to produce arguments which can be used to lobby for policies that improve the implementation of women's health rights. Using HeRWAI to analyze policy should help to: make a direct link between the policy and relevant human rights issues; gain better understanding of the current situation; make an assessment of the human rights impact of the policy, both now and in the future; and form a conclusion about what the government should do and what your organization will do to press the government into action. The HeRWAI is designed for use by women's organizations, health organizations and human rights organizations.
Here is an outline of the HeRWAI step by step: (1) Identify the policy - describe the policy, the affected groups of women and the rights involved; (2) Explore the government's commitments - find out which national and international treaties, agreements, policies and laws are relevant to the country and the policy under analysis; (3) describe the government's capacity to implement the policy and describe which resources the government has to implement the policy and which factors limit or expand the implementation capacity; (4) impact on the right to health - describe the short and long term effects of the policy on women's health rights; (5) state obligations - establish which state obligations are relevant in relation to the impact of the policy; and (6) proposals and action plan - develop recommendations and strategizes to enhance the enjoyment of women's health rights.
FIDA Kenya was one of the organizations involved in the development of the HeRWAI. FIDA Kenya has used the tool to analyze the Employment Laws in Kenya; Policy - Maternity Leave in Kenya; and the Regulation of Wages and Conditions of Employment Act which provides the legal framework for the maternity benefits entitles women to a two months fully paid maternity leave (provided that the woman shall forfeit her annual leave and should not lose any privileges during this period).
Kenya has ratified several treaties and made other commitments regarding issues regarding the Beijing Platform, the Cairo Plan for Actions and others. The Kenya constitution at that time did not include the right to health. The impact of absence of proper maternal mortality law resulted in the hiding of the pregnancy, impeding access to health care, risk to mother and child, risk of loss of employment, and unsafe abortions. CEDAW defines violence against women as "any act of gender-based violence that results in, or is likely to result in, physical, sexual or mental harm or suffering to women, including threats of such acts, coercion or arbitrary deprivation of liberty, whether occurring in public or in private life." The lack of maternity leave regulations constitutes a form of violence against women. It denies employed pregnant women, women in postpartum stadium and/or breast feeding women appropriate time and opportunities to seek health care and to recover from delivery. In this way, it causes unnecessary suffering and even physical harm. This is especially relevant for high risk pregnancies and where complications occur, as the regulations do not consider those cases and do not stipulate exceptions.
The Labor Laws were examined against government obligations as spelt out in international instruments and FIDA worked directly with the Central Organizations of Trade Unions (COTU) Kenya as the review of the Labor Laws. As a result of our engagement with COTU the Labor Laws were reviewed into one Employment Act which provides for maternity leave and the provision that women would not have to forfeit their annual leave as they proceed on maternity leave. There was also an introduction of paternity leave. Currently employers opposed to implementation of the laws however the engagement with COTU continues. In 2004, the country was in process of reviewing its labor laws. This presented an opportunity to address the gender neutral laws specifically the maternal provisions in connection to reproductive health.
The Labor Laws were discriminatory at two levels: failure to provide in certain sectors and the requirement that women forfeit annual leave on taking maternity leave. The Labor laws provided that women on taking maternity leave would forfeit annual leave and further some industries /sectors did not provide for leave including parliament and armed forces. The organization now wants to focus on cervical cancer which is the most prevalent form of cancer in Kenya after breast cancer. It will look at the issues of AAAQ and will likely focus on prevention.
3. Monitoring the Adequacy of Policy Efforts to Realize the Right to Health, Eitan Felner, Center for Economic and Social Rights (CESR), Spain
The presentation focused on the work CESR is doing to monitor ESCR. Eitan aimed to show how specific actions or omissions can result on ESCR violations. There is a need to address, from a human rights perspective, avoidable deprivations. There are several reasons for worldwide mortality and morbidity in early age. Only some of them can be attributed to governments' policy (action or inaction); others may be due to natural occurrences, lack of resources etc. The challenge is how to trace back deprivations to government policy. CESR has been trying to develop tools to help trace back the outcomes to policy efforts or inadequacy. Indicators are only a starting point. The question that needs to be answered is what indicators are telling you in relation to the obligation of progressive realization up to the maximum of available resources. So we need a series of tools to build a link between indicators and the specific obligations. The idea is to have a methodology that will use simple quantitative tools and combine them with simple qualitative tools to go from a poor outcome to an indication of a violation.
The first step is to identify deprivations and inequalities. The second step is to identify the main "determinants" or factors causing these deprivations: the obstacles impeding the enjoyments of human rights. The third step is to assess the adequacy of policy efforts to address these factors. There are inadequacies that have to do with accessibility for example (roads for example) or with inequality, such as the case in Guatemala where the number of doctors per population is less where there is indigenous population. There are also inadequacies that have to do with the demands of the services, or the use of the services. The appropriateness of these policies can be evaluated using principles drawn from human rights standards. For example, if looking at what the government has done to prevent maternal mortality, we could look at the availability of relevant health services (such as emergency obstetric care), the physical and economic accessibility of such services, their quality and their acceptability to all sectors of the community (including women from different cultural backgrounds).
Then there is policy, so a forth step is to assess whether policy failures are a question of inability or lack of political will. We need to include in our assessment macroeconomic policies. Again, in Guatemala, the problem is not only the health system, but the weakness of the State. Finally, NGOs have to identify why all these problems exist and for this we need to use a perspective of political economy, trying to look at the structural or root causes of the inadequacy. In some cases it can be corruption, indifference to the needs of the marginalized, etc.
There are, however, challenges in applying this methodology. One cannot expect the same level of enjoyment of ESCR rights in countries with differing economies. The level of obligation of States varies depending on the available resources. However, often the problem is not the lack of resources but resource distribution. There is need for monitoring mechanism for resource distribution. To measure progressive realization, you can compare over time an outcome indicator, like child mortality, with the level of economy e.g. GDP per capita. The problem is that it may not work in countries like Cambodia, whose annual GDP has grown tremendously but also child mortality. In India, the GDP has also grown very much and there has been a decrease of child mortality so one could say that there is compliance with the obligation of progressive realization. But the question would be if it is enough compared to the growth of the country. So it is important to compare similar countries. Doing that we find that the GDP of India has increased more than in other countries, but child mortality has not decreased as in other countries.
Another way is to go beyond outcome indicators to process indicators. These include comparing the rates of inequalities. Immunization rate in most countries in Asia were higher than in India. Another tool is to compare the health outcome with the relevant input over time. Thus an indicator may show great progression when there has been little input. This may not make direct causal relationship, but it is relevant to a human rights.
4. Using Budget Analysis to Support the Implementation of the Right to Health Helena Hofbauer, International Budget Partnership, Mexico [Power point presentation available]
Budget work has been a powerful tool to hold the government accountable to their commitments and obligations. It is important to look for more human rights instruments, but how these translates to policy and how the government allocate money to implement that policy, is different. Governments have the duty to take care of the most vulnerable population and particularly focus on the issues of availability, accessibility and acceptability.
The presentation looked at Mexico and relied on 8 years of work analyzing the government and trying to understand if the government has been consistent between the legal framework, the policies and the resources allocated for health. In the last decade, the Mexican government implemented a series of targeted programs to offer maternal health to the poorest communities who have no access to social security. In a first analysis it was clear that the budget allocated was insignificant and insufficient to address the needs of that population and per capita spending was the lowest when the need was the highest. User fees, one of the resources of structural adjustments hit the poor communities the hardest. This targeted program did not contribute to infrastructure, so where there were no hospitals there continued to be no hospitals because these programs did not contain any solution. Activists started to lobby to increase provisions for maternal health and they achieved it - resource allocation was increased 90%.
However, the method of distribution for these resources was discriminatory. States with lower maternal mortality were receiving more resources than the poorer ones. The formula to allocate funds de facto discriminated against poorer states. At the same time, there was change of government in Mexico. The Fox administration looking at the huge inequality of the population that were formally employed and had access to social security and those who were not, they decided to undertake a huge health system reform. They created access to health for all groups (employed and unemployed) which would allow the gaps to close between these two groups. It was discovered that health insurance did not include emergency obstetric care at basic levels. Emergency obstetric care is an essential intervention to reduce maternal mortality, so the coalition that was working on this decided to cost out basic emergency obstetric care, demonstrate financial viability and that it was easy to include this type of care, and the government did it. However there were no changes in mortality and no changes in poor communities.
This happened because there was progressive realization in terms of resources allocated. The government was putting annually an increased amount of money to health expenditure. It looked very good, but non discrimination was not being addressed in equal measure. In those States where the population was higher, the beneficiaries of that health insurance was lower. The result was that where there was the highest concentration of poor and unemployed, the beneficiaries were the lowest. The programs were not reaching the locations where problems were most acute. The reason for this was that despite the money increase, there were no changes in infrastructure and doctors. The same low number of doctors and nurses remained because health insurance does not cover the creation of infrastructure, it does not build a hospital. So what was happening with infrastructure? Only 30% of the money allocated for infrastructure was being spent. This is a clear case of not using the maximum available resources.
There were many lessons learned from this experience. Budget work is an adaptable, flexible tool with potential to impact governance and ESCR realization, but the short-term impact is limited, success has to be followed up and tested: money might increase, but that doesn't mean that it will be well distributed or benefit marginalized communities. An achievement of today can be undone tomorrow. Access to information is necessary. Sustained work is indispensable. Targeted programs and interventions will never substitute a well-integrated, functioning health system. Increasing amounts of money spent on health will not necessarily lead to the highest attainable standard of health, but budgets help us understand what the government is really doing (vs. plans and declarations). Broad participation and coalitions working at all levels of government are needed to turn the budget into a tool for claiming power. The analysis can be done by a couple of people, but making it have impact only comes with broad participation and that is the big challenge.
5. Questions and comments following presentations
- A request was made to the OHCHR to phrase the indicators on the negative: Percentage of women who do not have access to prenatal care; Children who are not vaccinated etc. This will create a greater picture of the need and have larger impact.
- To this it was pointed out that the OHCHR will be very glad to get the comments that were made and any other comments people have. One issue that is critical is that the covenant is clear in saying that ESCR require all sort of measures which also means all sort of strategies: indicators, budget analysis, litigations, policy development etc. The documents that are being produced are very much backed with the way international human rights law sees the progress that has to be made for the full involvement of human rights for everyone. It is important to be creative and look and think of other ways to move that way.
- It was also commented that evidence based call may be a delaying tactic by agencies. They supply irrelevant amounts of data, to sideline our vision from seeing the real problems on hand. The issues of human rights which were discussed 50 years ago are still being tackled today.
- One of the questions raised in the last session is what percentage of women not getting access to health service constitute and rights to health violation? These are questions that have to be asked. When you are dealing with human rights violations they have to be universally accepted. Civil and political rights are universally accepted. Our challenge is to make sure that a particular set of data (if that is the path we want to follow) which is also an open question is universally accepted. You could indicate that in the domestic level 50% or 1% of people have not gotten services and that that constitutes a violation for them. However then there is a large number of people that are not getting services and this is when the whether there are available resources and other series of complex equation questions become important. When you answer you can't have a one side view to say there is a violation, rights and indicators have to be universally accepted. The real question is whether we are looking at it from the domestic or international point of view. In the international point of view you can argue that in the international context there is a violation and that the country needs a change of policy. However, this will be an advocacy or lobby aspect. At the domestic level it is a different game. If you want to bring a case domestically you have to show that your claim is enforceable. The data can support your case: You say 20 people did not get services therefore there is a violation, but if you claim that 30% of people did not get a service and thus there is violation generally, no court will accept that claim. How do we make sure that the data and all the indicators area acceptable to point to a human rights violations, we need to arrive to a consensus of what does constitute a violation.
- There are also other ways to arrive that are not around indicators that can help point to a violation, such as testimonies. The question is not either or. The challenge is to know how they come together. On progressive realization, is the there a measure for conceptualization?
- To this it was responded that regarding the issue of statistic vs. testimony. We have to be careful of the fetishism of data and indicators and likewise not be fetish about testimonies. The idea is to have a toolbox of strategies and sometimes the answer is to have a combination of them. It is not either or, it is one with the other. Work has been done also on building conscience and an article will be published on the Sur Journal. In terms of making the issue too complex: the use of the tools is also not either or and the question is the setting where you will use it. If you are making an intervention to a human rights body, maybe this sort of tool is appropriate because it is short, and Committee members are overwhelmed with information. Members of the Committee on ESCR used it in the last session of Kenya. If you also want to analyze complex issues you will have to produce very complex data and will not be able to do it in four pages.
It was pointed out that someone referred to socioeconomic determinants and underlying determinants. However in public health there are very specific meaning with respect to social determinants to health and the underlying preconditions of health. So the right to health includes access to care and also what are known as underlying preconditions of health like nutrition, water and sanitation. Social determinants of health are something else: education, income and inequality, housing, patterns of discriminations etc. The WHO issued a report on social determinants of health and how important these are for society. These terms must be used clearly relevantly and specifically as we go about our human rights advocacy work. It is also important that we do not go overly complex and try to look at all different factors that affect all conditions or status and all that is related to everything. In a civil and political rights advocacy strategy we would not wait until there is an equal society to argue that someone has the right to a fair trial for example. So we have to look as human rights advocates at immediate obligations and then at other factors as well. Finally it was pointed out that the case of FUNDAR in Mexico looks as too modest. But it was a superb model of mobilization of using data correctly. It would be interesting to hear about the backlash that they suffered from the government who then made access to data much more complicated.
Normally, we assume that governments do what they can, and are constrained by a series of issues or elements that impede them to do what they have and want to do. But after the 8 year experience Helena is confident that it is not true. The realization of rights of the poorer population of the country is not prioritized, because the government feels this group of people can't hold them accountable. After the experience with Mexico the government started to restrict the way the health insurance information was presented as not to have to hand it. A legal recourse was needed. It is now more difficult and what the campaign has started to do is to diversify the level of governments it works with, getting the local governments to commit to specific things. It is important to continue the work and keep the government on the topic.
Moderator: Alicia Yamin, Harvard Law School, USA
1. A Human Rights Approach to Reducing Maternal Mortality, Mala Naidoo, Masimanyane Women's Support Centre, South Africa [power point presentation available]
Mala shared that she had recently attended a conference in Cape Town. Some of the issues discussed included power shifting and how far should one push for changes. These were inspirational. We can learn from the diverse examples of people, forming strategic alliances. If we truly want change in maternal mortality (MM) or the incidence of HIV/AIDS and access to health rights, we need to provoke and stimulate discussions. The incidence of maternal mortality is not exclusive to South Africa; we find it in other countries in Africa. There are lessons to be learned for the experiences in these countries and we need to use regional and international treaties and instruments as well national policy. When we look at any strategy we need to look at it from the regional, national, and international level so we can look at the issues of woman's rights in terms of health rights.
The MDGs establish a commitment to reduce maternal mortality by 75% by 2016, the reduction of maternal mortality is explicitly mentioned in the 1999 General Recommendations by the Committee on Discrimination Against Women and in General Comment 14 of the Committee on ESCR. CEDAW and ICESCR treaties are considered to be part of States' obligations. To protect woman's rights we need to take these treaties into consideration. The vast majority of maternal deaths are in the South, 95% of these deaths occur in Africa and Asia. A woman in Africa faces a 1 in 20 chance of dying in childbirth over her life time. These statistics are shocking, especially given that these deaths are preventable and they represent violations of women's rights comparable to torture. We need to look at this more closely and focus on it. The incidence of maternal mortality is more prevalent in indigenous and women living in rural areas, in poverty, and marginalized women.
The whole objective of human rights and maternal mortality is to improve health outcomes for all women. There is discrimination in terms of stigmatization as there is in the treatment of HIV/AIDS. Other issues in maternal mortality are making the government accountable, allowing women to participate in the decision making process, and empowering women in terms of what their health rights are and how they can access these rights. We can only see changes in policy if we can change it at the national level, and have resources to influence that change. We need to adopt a two-fold approach; we need to claim the right to maternal health as individuals, but we also need to make the government accountable. In terms of maternal mortality, it can only be reduced if countries have a well-functioning and effective health system providing quality care for all, independent of a women's economic and cultural background. In conclusion, there are many questions that can be asked in terms of maternal mortality, but what is needed is a holistic approach to address these issues by considering strategies, tools, and looking at the issues on the ground. Only then can we reduce the incidence of maternal mortality.
2. Human Rights Strategies to Improve Maternal Health, Elisa Slattery, Center for Reproductive Rights (CRR), USA [Power point presentation available]
Elisa focused on specific strategies that can advance maternal health. One strategy is fact finding and documentation of women's rights violations. CRR is looking at areas where reproductive rights intersect with more mainstream or recognized human rights and to relate them. Part of the strategy followed by CRR in the documentation on violations of reproductive health is to see how these can be tied to good governance issues. For example, in Failure to Deliver: Violations of Women's Human Rights in Kenyan Health Facilities (CRR/FIDA Kenya) they looked at barriers to accessing reproductive care in Kenya and found cases of abuse and neglect in part of the healthcare providers in private and public facilities, and a failure of accountability oversight form the government in terms of what to do when these abuses happen. In this case they called for oversight and regulation.
In a context where women are discriminated against, there are specific implications for women who are HIV positive. They documented these violations in At Risk: Rights Violations of HIV-Positive Women in Kenyan Health Facilities (CRR/FIDA Kenya), particularly in light of a legislative trend that has been taking place in other parts of the world and primarily in West and East Africa that calls for mandatory HIV testing of pregnant women, mandatory disclosure to partners, and criminalization of transmission of HIV including mother to child transition. One of the objectives of the Kenya report was to point out the impacts of this kind of legislation in terms of women's rights violations and the effects on maternal health. For example, At Risk, documented that women who feared involuntary testing and disclosure of their status to others without their consent often stopped seeking maternal health services thus diminishing the effectiveness of maternal and child health and HIV prevention programs.
CRR also discussed Broken Promises: Human Rights, Accountability, and Maternal Death in Nigeria (CRR/WARDC) that examined some of factors which contribute to Nigeria having the second highest number of maternal deaths in the world. In their interviews they often heard that the high maternal mortality rate was mainly due to cultural and social factors. However, CRR and WARDC looked at the areas where the government had failed in its responsibilities. For example, the government no longer subsidized contraceptives; as a result contraceptive use was very low, which affects maternal mortality. A big part of the problem has to do with decisions that are made in terms of government funding and funds allocation. In these reports they sought to make specific recommendations that could be used as advocacy tools that could be taken to national human rights institutions and regional and international accountability bodies such as the African Commission on Human and Peoples' Rights and United Nations treaty monitoring bodies.
These kinds of findings can also be used in litigation. In terms of litigation, there are multiple goals to bring attention to the issues, to change national policy, and the creation of regulation. It is also important to establish complaint mechanisms within target countries so that people can seek redress. While the right to health might be something that is subject to progressive realization, the right to redress and remedy is not, it is a fundamental civil and political right. Finally, Elisa mentioned the international initiative on maternal mortality and human rights which goal is to promote the framework around maternal mortality and human rights. They have a wide range of stakeholders and expertise coming together and working on this issue. The website is: http://www.righttomaternalhealth.org/
3. Fighting HIV/Aids from a Human Rights Perspective, Regis Mtutu, Treatment Action Campaign (TAC), South Africa
South Africa has a constitution that grants the right to health but the issue is how do you make that right something that is realizable, particularly to poor black women who are affected by HIV and do not have access to health services. The Constitution provides the guide on the obligations of the government and it also sets out the role of the courts to enforce these obligations. The courts have been good in giving judicial interventions. There have been four cases, particularly on what has to do with informed consent, privacy, and discrimination. Another interesting case concerns the South African defense forces where they lost the right not to deploy HIV positive soldiers into foreign peace keeping missions but also in terms of promotion. They have been given six months to show a comprehensive plan that includes the deployment of HIV positive soldiers and outlines promotion mechanisms.
However, the most politicized case was one where the Department of Health was not providing Nevirapine to expecting mothers with the argument that the medication is too costly and that there is a lack of evidence of the safety of the drug to the mother and child. At that point in time, the facilities for prevention transition were only available in a few sites and there were no plans by the government to roll-out these services. So TAC took the government to court due to the need to have a ruling for that government that has been in a position not only to provide services to prevent mother to child transmission and also the drugs and resources to prevent the transmission. The courts ruled in favor of the right to health of women and this was controversial because it was believed that the court was giving guidance to government on how they should implement policies. In the short term the government was asked to actually provide these services and in the long run they were asked to roll-out these services.
This fight was won because they used a human rights approach but this approach has both advantages and disadvantages. The advantages are that it can be uses to shame the government showing that they are not following the national and international protocols. It also leads to a more holistic approach because it brings in to interplay other rights, such as contraceptive, legal and safe abortion and this can be connected to women's reproductive health. It is a robust approach that can lead to policy change. The disadvantages are that unlike criminal law where actions are immediate, in this approach it is very difficult to enforce the sentences into policies. Also, it is important to involve the community so that there is participation of the beneficiaries so they can demand these services in their clinics.
The way the case was presented, it focused on women's rights but also addressed children's rights. This was done for strategic purposes but it was important to highlight that women's rights are important not just because they are mothers but also because they are people and therefore women's rights should be pursued with the same vigor as children's rights. Pursuing women's rights is not only morally imperative but it is also the proper way to combat HIV/AIDS. In conclusion, it is appropriate to give hope to people when they are able to benefit both from public and private sector through litigation that is combined with public protest and a well articulated media campaign, so it is possible to put HIV/AIDS and particularly women's reproductive health on the public agenda.
5. Questions and comments following presentations
- As part of litigation there has to be an awareness campaign to educate women. There are cultural aspects that prevent women from using services. So we have a long way to go in enlightening minds; not just litigation but also protecting the people we are fighting for and see how much they know. The Network should enlarge their approach from advocacy only to include community awareness to the litigation.
- In terms of culture if you look at the cases that have come up, each country has different cultural practices. In terms of that we need to look at strategies to address them and to be country specific. So, it is very difficult to have general indicators to look at issues of culture and how to turn that around. We need to look at each country and asses it on those bases.
- Given that there are such cultural barriers it is even more important that governments ensure that when women are able to access services that they are accessible and with high quality. One of the things that we found is that in addition to cultural reasons women had the fear of being turned away by the providers, it was a complex issue so even thought culture was one piece there were certainly other pieces as well that one can point to more concretely on what the government should do.
- The concept of culture needs to be unpacked a little. The health systems should provide services that are in accord with cultural believes and traditions. When there are cultural barriers then it is the responsibility of healthcare provider to explain the benefits and risks of certain procedures with respect to the cultural believes of the people receiving it. A third barrier is patriarchy and gender subordination, where men make the decision of when women seek care and those are the cultural barriers than in Alicia's opinions NGOs need to work with the communities.
How can this relevant information reach the government so it can be translated into action? How can it get to the people affected? How can this research be applied?
There is a lot of valuable information in the report "Failure to Deliver" on how to carry out research into potential violations, the knowledge to have the skills and the precautions to have when doing this. It would be interesting to hear more about this.
In terms of resources on HIV litigation, there is an excellent publication called "Courting Rights", it is a summary of litigation on HIV put out by the Canadian HIV Legal Network.
These reports need to be used for advocacy with the government. It is important to show the national government these reports with current statistics and data on inequalities. Also, you need to work at the local level with local health promoters who monitor their local health centers and then feeding that information to the National Human Rights Office to carry cases of violations.
CRR looks at the report just as the first step. They do follow-ups and advocacy with the MOH and other key government officials. Also, the findings of the reports have been used in training for healthcare providers. The process is slow but there is some headway, and there is need for further concrete actions to be drawn from the reports.
TAC shares its findings with people living with HIV/AIDS and also does a publication called "Missing the Target". These publications are used as basis for national level advocacy. They also have implemented treatment barometer, to measure the change in service as resulting from the researches done.
1. Moderator: Anand Grover, UN Special Rapporteur on the Right to Health and Lawyers Collective, India
Anand explained to the participants that patents are rights that allow a monopoly; it is a negative right because it excludes other people from making the product or using the process. There are two types of patents: Patents for product and for process. Patent is a statutory right not a common law right, so you cannot have cross border reputations. In the case of patents it applies only to specific countries which have adopted a specific patent law. So patent laws allow monopolies and eliminate competition and as a result prices are higher. In India after 1970, Mrs. Gandhi introduced a new patent regimen, where product patents in pharmaceutical and agriculture were not recognized. This meant that you could make the same product but in a non-patented way. So anyone could make the product, you could only patent the process of making it. This meant that Indian companies had to invent new processes that were actually better and they were able to "out" international companies from the pharmaceutical sector.
2. Prioritizing the Human Right to Health over Economic Interests: the Brazilian Case, Marcela Vieira, Conectas Human Rights, Brazil
Increasing and sustaining access to affordable antiretroviral therapy (ART) continues to pose many challenges for the developing world. According to estimates from the World Health Organization (WHO), nearly 6.5 million people in low and middle-income countries are in urgent need of ARV treatment. However, due primarily to patent protection and high prices charged by drug companies, only 1.3 million people actually receive treatment. Brazil is one of the few countries in the world that has a policy of universal free access to AIDS treatment, and it can be said to have achieved universal access to ART. The National STD/AIDS Program estimates that about 600,000 people are infected with the HIV virus in Brazil. Of these, 180,000 take ARV drugs. The Ministry of Health's budget for purchasing antiretroviral drugs in 2007 was R$984 million (about US$ 500 million). 80% of this money is used to acquire 11 patented medicines and 20% is spent on 7 drugs that are manufactured domestically by Brazilian companies. The fact that such a huge portion of the budget is being spent on patented medicines has put the sustainability and universality of this healthcare policy in jeopardy.
Brazilian success has depended mainly on three positive factors: i) a commitment to ensuring universal access to ART with legislation giving free access to treatment; ii) public sector capacity to manufacture medicines; and iii) strong civil society action to challenge the lack of access to medicines and support government initiatives to improve access.
The Brazilian public health system began providing antiretroviral agents (zidovudine monotherapy) in 1991. In 1996, under widespread social mobilization, a new law was approved, requiring free treatment for individuals with AIDS. Known as the Sarney law, strengthened the existing legal framework guaranteeing free access to medicine. The approval of this law decisively improved the National AIDS Program's structure for purchasing medicines. By the end of 1997, an estimated 36,000 people were receiving ART. Another factor of considerable importance in the implementation of Brazil's universal access policy was the ability to produce ARV medicines locally. Brazilian companies were able to produce generic drugs at much lower costs than those charged by transnational pharmaceutical companies. This was possible because the Brazilian intellectual property law in force at the time (Law 5772/71) did not include recognition of patents for pharmaceutical products and processes.
However, in addition to the Sarney Law, 1996 also saw the approval of a new Intellectual Property Law (Law 9279/96), completely overhauling the existing legal regime that permitted medicines to be produced locally at affordable prices. Brazil's new intellectual property law sought to adjust to the rules of international law established within the framework of the World Trade Organization (WTO), especially the TRIPS (Trade-Related Aspects of Intellectual Property Rights) Agreement, which established the obligation to recognize intellectual property for all fields of technology, including the pharmaceutical sector. The TRIPS Agreement granted delayed phase-in periods for developing and least-developed countries that did not previously recognize patents in some fields of technology - such as pharmaceutical products and processes.
Brazilian intellectual property (IP) law incorporated most of the TRIPS flexibilities, with the exception of the parallel imports. Brazil also has incorporated a peculiar TRIPS flexibility: the health sector participation in analyzing pharmaceutical patent claims. Finally, compulsory licensing has been incorporated by Brazilian legislation and can be brought into play for a number of reasons, the most important to health being the possibility to issue a compulsory license in cases of national emergency or public interest declared by the Federal Executive Authorities. Although these TRIPS flexibilities have all been incorporated into Brazilian legislation and are compatible with international rules governing the matter, it is another matter as to whether the country will actually exercise these powers to obtain medicines at more affordable prices. Actual exercise of TRIPS flexibilities has been limited
In Brazil, price negotiations, backed by the threat of compulsory licensing and local generic production, have been the main strategy used by the government to lower the price of patented antiretroviral drugs. However, since the Brazilian government had never actually issued a compulsory license for the domestic production of medicines. In 2005, during a round of negotiations with Abbott to lower the price of lopinavir/ritonavir, used by 17,000 people, the Brazilian government took a first step towards issuing a compulsory license by declaring that the medicine was of public interest. At the same time, the government gave the patent holder, Abbott, 10 days to offer a reasonable price, but in fact negotiations were protracted over 4 months, and concluded with the government agreeing on a price of US$1380 per patient per year for the old version and US$1518 for the heat-stable version. The failure to issue a compulsory license in this case prompted NGOs to file a "civil public action" against both the Brazilian government and Abbott, demanding the use of compulsory licensing for lopinavir/ritonavir. The judges have so far prevented the case from moving forward, arguing that a compulsory license would probably result in trade retaliation from the United States.
The compulsory license was used for the first time in Brazil in 2007, for the drug efavirenz, used by 75,000 people. Brazil declared efavirenz to be of public interest in April and the compulsory license was issued in May 2007. This compulsory license has illustrated the government's commitment to the sustainability of its policy of free access to HIV/AIDS treatment in a context where patented drugs are sold at exorbitant prices that are unaffordable for the vast majority of developing countries. Furthermore, the possibility that the government could, as it has indicated, make further use of compulsory licensing for other medicines is extremely positive, since it is a move to assure the sustainability of not only the National STD/AIDS Program, but also the entire public health system.
3. TRIPS Agreements and the Right to Health in Egypt, Hossam Baghat, Egyptian Initiative for Personal Rights, Egypt
The Egyptian Initiative for Personal Rights (EIPR) has a program on health and human rights which is the only entity in Egypt working on this issue. Since 2004, the organization started the health and human rights program realizing the gap that existed in the work of the human rights community in Egypt. This was a few months before the TRIP Agreement entered into force in Egypt and other countries, and their initial planning phase for this program revealed a huge need particularly among members of parliament and the media to understand the TRIP Agreement on the one hand but also to understand the Egyptian property law that was passed in 2003 to domesticate the TRIP Agreement. This was their entry into the field; they elaborated a document explaining and simplifying the TRIP Agreement and the Egyptian IP law. This document was highly appreciated by members of the health committee of the houses of parliament; it also gave EIPR credibility with the Egyptian Mission in Geneva.
They organized trainings with Arab and Egyptian lawyers in collaboration with the UNDP AIDS program in the Arab world. The emergence of an Arab network of activists on TRIP's law issues was thanks to the Bush administration. In 2003, Bush expressed his desire for the formation of a Middle East Free Trade Area (MEFTA) and they accelerated the process of negotiations between the countries. Each Free Trade Agreement (FTA) the TRIP's plus provisions got worse and worse and that inspired several civil society movements, especially when Egypt started free negotiation talks with the US administration for an FTA. Even though the negotiations fell apart, they learned from the experience and they used this in the negotiation of another treaty with the European Free Trade Area. Due to their knowledge of TRIPs they were able to have an effective intervention with the Ministry of Foreign Affairs and as a result the treaty that Egypt signed was much better in terms of intellectual property and in terms of ruling out TRIP plus provisions compared to other FTAs that were signed with other countries.
Currently, EIPR is involved with several projects but they feel they are a step behind the Indian or the Brazilian movement because they suffer from a lack of capacity to understand the technical issues. They lack human resources with expertise in IP so they rely on foreign consultants. This is starting to change as they have access to global networks like the Net and they are starting to rely on this exchange of information. Now, EIPR is focusing on the role of courts following the focus that the multinationals have taken on courts as enforcement mechanisms. The multinationals have pushed for the establishment of specialized courts and most of the lawyers in these courts have been trained using USAID grants given to the Ministry of Justice, so EIPR are planning a project to look at the training curricula and systemically monitoring IP and patent cases that are litigated before these courts.
They had an early success in 2005 in a case that was filed by Pfizer against two Egyptians generic producers where Pfizer realizing that the FTA with Egypt was not going to happen tried to get the courts to write the protection of data exclusivity into the Egyptian law even thought this law is in strict compliance in that matter. The law requires each generic producer to produce new data on the safety and efficacy of drugs ruling out competitions from generic companies. EIPR intervened as a third party on the fight of the Egyptian generic producers and just by filing a brief on the ICESCR on the obligations and the right to health and the TRIPs obligations and explaining to the court what Pfizer was trying to do Pfizer actually withdraw the case.
4. Litigating the Right to Medicines in India, Colin Gonsalves, Human Rights Law Network, India
In the Indian Constitution, article 21 refers to the right to life but there is no right to health, so the developments that have taken place in Indian are really remarkable. The first event took place in 1987 when the Supreme Court in a far reaching order said that public health is a priority, that the State must switch to indigenous production, and that the poor should get medicines at affordable prices. In 1995, the Supreme Court declared the right to health and the right to health care as a fundamental right. In 1996, the Supreme Court said that government hospitals are duty bound to preserve and protect life but more importantly they said that when a poor person goes to a hospital and needs drugs that they need to look after that person, financial inability cannot be pleaded in questions related to drugs and medicines for the poor. These are the three landmark judgments of the Supreme Court.
In 2006, the government of India proposed to deregulate the pricing of drugs. That immediately affected people suffering from malaria, hypertension, diabetes, leprosy, tuberculosis, and so on. The Human Rights Law Network filed a case in the Supreme Court saying that if the poverty line in India is one third of dollar per day then cost of the medicines for treating tuberculosis far exceeds the income of most people in the country and on that basis challenged the government's notification of the deregulation of the prices of drugs. The government replied saying that under the WTO system governments are obliged to let companies sell drugs at market values and those market values would ultimately result in a stabilization of prices and that competition results in a decrease of prices. A study was done that showed that as far as pharmaceuticals are concerned; this principal does not apply at all. In fact, they found that the highest selling drugs were the most costly, even those consumed by poor people. On this basis, the Supreme Court gave an order saying that the government should guarantee that all the drugs in the essential list would be available and affordable for people that are below the poverty line. As a consequence, the government will shortly release a new pharmaceutical policy.
The next case Colin addressed was the hemophilia case which came up in the High Court. The claim was that people living with hemophilia cannot even get the drugs they need in the country and when they can find it, it is extremely expensive. The High Court, in a remarkable intervention, directed government to form a special committee, and ultimately the government agreed to provide the anti-hemophilic factor free to people below the poverty line and substantially subsidized to people above the poverty line.
The third case presented was the HIV case pending in the Supreme Court, where a number of parties are involved. In 2002, the government decided they would only focus on prevention not on treatment so they would not provide antiretroviral drugs. So many groups presented their case to the Supreme Court taking many countries in Latin American as an example where the antiretroviral drugs are provided for free. There has been some success in that the government is now doing something and the hope is that in the future they will do more.
The next case is the vaccine case where several multinational companies came in promoting all kinds of different vaccines. The Ministry, under the globalization regimen, is collaborating with multinational corporations by closing down vaccine production. The argument for this is that there have to be certain standards that need to be maintained for hygiene. So instead of raising the standards, the ministry took a short cut by closing the production, and today national manufacturers say that India must have indigenous production of vaccines.
5. Human Rights Guidelines for Pharmaceutical Companies, Gunilla Backman, Consultant, Sweden (former researcher w/ Paul Hunt at the Human Rights Centre, Univ. of Essex)
The human rights guidelines were developed by Paul Hunt, former Special Rapporteur on The Right to Health. Gunilla first addressed the reasons behind needing human rights guidelines for pharmaceutical companies. In human rights, states have the primary responsibility for enhancing access to medicines. Between 2002 and 2008 they discovered that a lot of countries did not have universal access to medicines. They found two main problems, one was the policies and practices of donor countries and the other was the policies and practices of pharmaceutical companies. Between 2003 and 2006 they found that the human rights responsibilities for pharmaceutical companies were not clear. Everyone said that the pharmaceuticals had responsibilities but no one knew what these responsibilities were in relation to human rights.
Mr. Hunt decided to make a two phase proposal which included creating a small group of human rights experts and of representatives from pharmaceutical companies to work together and decide the human rights responsibilities of pharmaceutical companies. This work would lead to a report in a time frame of two years. The second phase of this proposal would be that the small group would use this report to evaluate policies and practices of certain pharmaceutical companies and this result would be made public. It was estimated that this would take approximately three years. The initial response of the pharmaceutical companies was very positive but when they realized they were also going to be evaluated they did not want to participate. In September 2007, he published a draft of the pharmaceutical guidelines which was made available in the University of Essex and other networks. During this time he met with some companies and NGOs, in a meeting supported by Brazil, to comment on the drafted guidelines.
The next step was to test the guidelines. Mr. Hunt wanted to go to companies and see how the guidelines applied but all companies declined to participate except Novo Nordisk. This was the process to elaborate the guidelines, then a report came out which is available online. The guidelines are grouped by: 1) transparency, 2) management, 3) monitoring and accountability, 4) pricing, and 5) ethical marketing. The guidelines should be read with Mr. Hunt's report on access to medicine. To write the guidelines the health system was always considered because in order for the right to health to work the health systems are the core. Shared responsibility is also addressed and how enhancing shareholders values need to be seen in the context of other social developments and human rights responsibilities. The guidelines do not use the word "must" instead the attempt is to always be very modest by using the word "should". The main objective was to provide practical, constructive, and specific guidelines to pharmaceutical companies and other interested parties, including those who wish to monitor companies, based on human right principles - non-discrimination, transparency, monitoring and accountability and the right to health.
The next step is to present this report to companies and other organizations to get comments from them. A publication of this work supported by UNFPA will come out soon, Mr. Hunt will very much like that NGOs use the guidelines and monitor pharmaceutical companies and try to hold them to account and test it.
5. Questions and comments following presentations
- In terms of actual next steps, this is a paradigm shift in trying to look to the pharmaceutical companies from a legal point of view. Everybody will not agree with everything in the report but it is a new approach in the field that has to be developed. The reaction of the US representative in the General Assembly was to say that the only responsibility and obligation of companies is to their shareholders and that is to make profit. But even in the US law, and now also in the European law, the pharmaceutical companies and company law has changed so dramatically in the last 50 years, so to say that they are just there to make money is complete rubbish. But this gives an idea of the thinking of the US government, at least of the past administration.
- Have the guidelines been presented to the GA and now is there going to be a resolution on the right to health?
- It was explained that this is a first working draft and it has to be developed further. The approach is to test it in the field so this development can happen and so, the guidelines can be used with generic companies.
- Anand Grover was asked if he was planning to introduce any methods of work with these guidelines and use his position as a link between national organizations and the UN?
- To this Anand responded that there is a lot of the work that Paul Hunt has done that will be carried forward. From there, Anand will see how thing can move forward in difficult topics such as this one. There are so many areas to work in. He is planning a series of meeting to take about these issues. His agenda is going to be shaped more by the community rather than his own personal agenda.
In someone's opinion it is a fantasy to start with the idea that there is such a thing as human rights responsibility of pharmaceutical companies. It is just not there. Therefore there are limits to what these guidelines can achieve; the same is true for the voluntary codes of conducts that industries try to impose on themselves. In his opinion, in the guideline we try to bend over backwards to play fair with companies that simply are not playing fair. We are being fair and they are following their interests. The main value that he sees from this effort is the call on the attention to this and the publicity that this can bring about. Therefore, the only way to get forward with this is to use this as guidelines for us not for them, to hold the industry accountable because in our language the word must be "must" and not "should".
It is really valid what you have said. People are aware that it is a difficult task and it is not a fair game. But it is important to get the guidelines out and it is important to monitor the pharmaceutical companies, so NGOs should use them.
Another point that can be made is that one of the difficulties for Mr. Hunt was that if you want to try to regulate, how do you start? If you start by putting law into place you just have a revolt and you will not get anywhere. To start with a benchmark, get it accepted, and then you can go towards the law. That is why in his opinion this is a good starting point.
A participant agreed that this is a good start but also agrees with the person that thinks that the guidelines are not going to lead to legal obligations. For him the question is how to put pressure on the pharmaceutical companies that only look after the interests of the shareholders. How can the power of social movement begin to put pressure so that these guidelines are picked up? People are dying, there is no time, and there is a need to start increasing access as quickly as possible. What sort of solidarity actions can be taken now? Some people are still stuck in litigation and in his opinion there is a need to move beyond that and become much more creative.
The social movements do play a very important role in the pharmaceutical companies. For example, in India three applications for patents were withdrawn because of large pressure. In terms of the guidelines, it is up to the civil society to say whether they are acceptable or not, whether they should be converted from a "should" to a "must", and how do we go about it. There is a need for critical comments so the guidelines can be improved and then largely accepted by the UN system and then that becomes a benchmark.
Moderator: Caroline Kerubo Okioga, Center on Housing Rights and Evictions (COHRE), Kenya
1. Strengthening Health Systems, Gunilla Backman, Consultant, Sweden (former senior researcher to Paul Hunt at the Right to Health Unit at the Human Rights Centre, University of Essex)
The Human Rights Council requested that the former Special Rapporteur on the Right to Health, Paul Hunt, develop a report on health systems with the objective of considering "the possibility of identifying and exploring key right to health features of an effective, integrated and accessible health system, bearing in mind the level of development of countries and from the perspective of the right to the highest attainable standard of health". The process to develop the report included: 1) an extensive literature review for health and legal perspectives, 2) an in depth revision of General Comment 14, the Alma-Ata Declaration, and WHO's building blocks, 3) consultations with human rights experts, academia, UN-agencies (particularly WHO and UNAIDS), health workers who have practical experience, local and national NGOs and associations, and 4) meetings with indigenous populations, such as the Maori and Australian Aborigines.
The main issues addressed during the consultation phase were: 1) elaborating an "operational" definition of health systems, 2) focusing on the added value of the right to health in health systems, 3) including areas that are often left out, such as laboratories and dental care, 4) capturing the cultural aspects of health systems, such as traditional birth attendants and traditional healers, and 5) ensuring that the legal obligations such as non-discrimination and AAAQ are reflective. Based on General Comment 14 and other key normative frameworks, a new model was elaborated of the key right-to-health features of a health system arising from legal obligations.
The results showed that the fundamental right-to-health features and principles that must underpin a health system are: well-being of individuals, communities and populations; and also recognition of the right to health; transparency; participation; equity; equality and non-discrimination; culturally acceptable; quality; comprehensive national health plan; underlying determinants (including social determinants), e.g. safe water and sanitation, food, housing, safe environment, education, gender, poverty and social exclusion; monitoring and accountability; international assistance and cooperation; effective coordination between ministries, between services in the country and within a health facility; and referral systems.
The process of developing a comprehensive national health plan should be transparent and participatory. It should also reflect the public, private, and alternative services within the country. The process should include the following six steps: 1) a situation analysis, 2) prioritization, 3) impact assessment, 4) aims and objectives, 5) time frames, indicators, and benchmarks, and 6) a monitoring, evaluation, and accountability plan. The national health plan should also include a budget estimate taking into account both national and international resources. Finally, the plan should be made public. According to the WHO, the "building blocks" of a health system are health services (medical and public health), health workforce, health information system, medical products, vaccines, technologies, health financing, leadership, governance, and stewardship.
Finally, there are several issues that arise when the right to health is applied to the WHO health system "building blocks" of health workforce:
Is there an up-to-date plan for human resources in preventive, curative and rehabilitative health, encompassing physical and mental health? See General Comment 14 para. 43(6) and 55.
Is there a role for mid-level providers, such as assistant medical officers and surgical technicians, as well as public health professionals?
Are there outreach programs for the recruitment of health workers from marginalized communities and populations, such as indigenous peoples?
Are effective measures in place to achieve a gender balance among health workers in all fields?
Are effective measures in place to ensure that the number of domestically trained health workers is commensurate with the health needs of the population? Are the number of health workers collected, centralized and made publicly available on a regular basis and broken down by category, e.g. nurse and public health professional?
Are human rights a compulsory part of the training for all health workers including respect for cultural diversity, as well as the importance of treating patients and others with courtesy?
Are opportunities for further professional training in place for all health workers without discrimination? See General Comment 14 requires "appropriate training for health personnel" (paragraph 44(5)).
Are health workers receiving domestically competitive salaries as well as other reasonable terms and conditions of employment?
Are incentives in place to encourage the appointment, and retention, of health workers in underserved areas?
2. National Assessment Tool: the Right to Health, Claudio Schuftan, People's Health Movement, Vietnam
The People's Health Movement (PHM) Global Campaign on the Right to Health www.phmovement.org started in 2005. It is being implemented in 12 countries now, and 5 others are very close to getting funding to carry out the RTH assessment, which is the first part of the campaign. Probably another 8 countries will start work on it in the next 10 months. The People's Health Movement is a network for groups working on a health for all agenda. The most important document of the PHM is the People's Charter for Health which is a short document that contains all that the movement stands for. It is available in 46 languages on the website above.
The campaign starts out taking a "photograph" of what the situation of the right to health is in a particular country. In order to achieve that, the PHM developed A National RTH Assessment Tool which is the basis of this presentation and discussion. The RTH Assessment Tool is based on the methodology of HeRWAI presented in Session 2. The tool is very user friendly. The process assumes there will be common findings in most countries; these are identified through these assessments. The campaign will then get organized around these findings to influence governments on right to health issues. The process to be followed in each country finishes with a national workshop bringing together a coalition of NGOs, government, UN Agencies and others. PHM has started the project by giving some seed money to countries to start the process of getting organized and then additional money for the workshop. The idea is that they do not want the report to be done by academics, but should involve a participatory process with beneficiaries whose rights have been violated. NGO's participating in national "PHM Circles" are asked to divide up the work, with a heavy reliance on testimonies of cases reported by the people whose rights are being violated. The process has been well received and is spreading.
The campaign has a mobilizing and a motivational capacity and it is very participatory. Uruguay and Benin have completed their reports already. Claudio is the campaign's global coordinator. The RTH assessment instrument has proven to be a good diagnostic tool. Claudio encouraged participation of the individuals and groups present in the room in the campaign. To join the campaign people only have to endorse the charter of the PHM. Once you enter the site you click on 'campaigns' on the left of the opening window. In each country, 3 NGOs need to decide to jointly launch the campaign and have 2 or 3 campaign preparatory meetings. During the first meeting, organizations endorse the Charter and then they have to discuss the assessment tool paragraph by paragraph and if they decide to embark in the campaign they prepare a plan for review and funding before they can start the work.
3. Accessibility for All: Ensuring the Rights of Persons with Disabilities in Health Systems, Janet E. Lord, Harvard Project on Disabilities and Blue Law International, LLP, USA
Janet started the presentation by noting that situating disability on a health panel may well be cause for concern among disability rights advocates. While people with disabilities have the right to health like all other human beings, the particular historical conceptualization of disability as a narrow medical issue is something disability rights advocates have struggled to change around the world for many decades and this is a struggle that is not yet won. The recent adoption of the Convention on the Rights of Persons with Disabilities (CRPD) (adopted by the UN Generally Assembly in 2007; entered into force in 2008) has helped to advance a paradigm shift, according to which disability is not conceived as a narrow medical or a charity issue. The CRPD adopts a rights-based approach to disability and frames disability issues within a social model. The social model of disability understands that people with disabilities are inhibited in their full participation in society and in the realization of their human rights because of social barriers such as laws, attitudes, the physical environment, communication, technology, and the like.
The CRPD aims to ensure that health systems are people-centered, that they are acceptable for the most marginalized groups, which of course include persons with disabilities. Some of the strategies to achieve this are easy to implement, but they are not always intuitive. It should be stressed that the focus of the CRPD is not on preventing disability and it is not focused narrowly on treatment or cure. Rather, its focus in the health context is on ensuring that persons with disabilities are able to access the full range of health services. In this sense, the CRPD recognizes that an impairment can be both a cause or an effect of a health problem, but on the other hand, a person with a disability can be perfectly healthy.
People with disabilities (PwD) are among the poorest of the poor. There some 650,000,000 people with disabilities worldwide, 80% of whom live in developing countries. PwD are disproportionally affected by violence. Children with disabilities often receive less nourishment, and are more vulnerable to disease. Many PwD lack information, skills, purchasing power and access to health services for a variety of reasons. PwD experience some or all of the following health related problems: lack of clean drinking water (maybe publicly available, but not accessible); lack of access to vaccination programs; lack of birth control and sex education; lack of participation in medical decisions; and other barriers that the disability convention tries to address with more specificity than other international treaties.
The CROD does a good job of tying the right to health to the specific life experience of people with disabilities. This is so not only in relation to Article 25, which is the specific health provision, but also through the principles of general equality, non discrimination, reasonable accommodation and other general principles which are fabulous repositories for all of us, whatever the particular issue or groups we concerned about in relation to the right to health (whether persons with disabilities, older persons, minorities, women, etc). General Comment 5 on persons with disabilities of the Committee on ESCR was also a helpful resource for many of the issues of the convention. Article 25 provides for the right to sexual and reproductive health and access to population-based public health programs. It requires that services be provided as close as possible to people's communities and the provision of disability-specific services, including prevention of secondary disabilities, autonomy and independence in health care decision making, non-discrimination in access to life and health insurance, the prevention of discriminatory denial of health care or health services or the denial of food and fluids on the basis of disability and reasonable accommodation as a positive obligation.
How is the CRPD being used to assess how health systems are responding to the needs of PwD? A global survey conducted by Nora Groce and other colleagues of the Yale School of Public Health looked at the impact of the HIV/AIDS epidemic on PWD. Despite the fact that risk factors associated with disability (extreme poverty, marginalization etc) are also factors heightening risk for HIV/AIDS related, there has been almost no attention paid on the impact of HIV/AIDS on PwD. The studies are showing now a higher rate of HIV infection on members of the disability community, because of the lack of access to aids outreach and education efforts. It shows how health systems are failing PwD. There are several reasons why persons with disabilities have gone unnoticed including stigma and discrimination, a belief that people with disabilities are sexually inactive, unlikely to use drugs or alcohol, all of which is non- sense. As a follow-up, the study builds a typology of intervention to address the need for inclusion in HIV programming. It is prioritized in short, medium and longer term initiatives and takes budgetary considerations into account. Some of the examples of things that could be done to include PwD are: include a disability dimension to national AIDS strategies and national AIDS councils, and get help people from the community to understand how to reach the disability community.
As a conclusion it was explained that the CRPD is an important tool to advance a rights based approach to health and to ensure the transformation of health care systems to be people oriented and AAAQ. It should be regarded as a progressive development of human rights law generally, and should not be seen as an instrument that works only for people with disabilities.
4. Questions and comments following presentations
A comment was made that people with mental disabilities are even more stigmatized and marginalized than people with physical disabilities. Many of the needs are as great or greater. The strategies that can be used differ. There are greater challenge to participation specially among people with psychiatric disabilities. A question was asked on how have they mobilized participation and what are the successes and the challenges?
It is difficult to mobilize a diverse disability constituency in implementing and mobilize change. It is important to broaden the coalitions. There is still a lot of work to be done on participation.
There is so much stigma on the ground. One of the policies should be, are you empowering the disability groups across the globe? Empower them, get conducive climate including education. In comparison to HIV, there is very little information put out on disability. We have to start at home. We should have more disabled people represented in this forum.
- The list of organizations involved in the Public Health Movement was requested and the question was made of whether Nigeria was already working on the campaign. Most of the organizations working in Africa do not work in Nigeria. It would be important to work in Nigeria.
- On the Nigeria questions: Steve Estey is representing disabled people international and they are a grassroots organization so it was suggested that the interested participant be put in contact with him. Maybe that is the way to start to work in Nigeria although good work on disability issues is already happening in the country.
- There is need to have global a campaign. In Nigeria, there is a movement, focused on the parents and guardians of disabled people. We have funders, but it is difficult to work when people are not cooperating and are very slow to respond to requests.
- Has there been any evaluation of the success brought by participation of people with disabilities in certain institutions? What was the outcome? Did it increase for e.g the coverage of service?
- On the issues of evaluation: This is relevantly recent research, so most evaluations are yet to be done.
- In Zambia, you used people who are disabled to reach out. Wouldn't it better instead to empower them and give them the capacity to get their own resources?
- Amnesty International, has a global campaign, but they do not look at disability. Within ESCR-Net, disability should not just be looked at as a sub section in health. It should be established as a cross cutting issues on all other areas of work of the Network. This will be more helpful for the disability movements. In Kenya, disability groups are not funded by the Exchequer, they depend on the donor funding. The NGOs who work on Kenya do not want to focus on the organizations that are formed by groups of persons with disabilities. Donors focus on NGOs that are writing proposals for them, but the DPOs are not given funding and then PwD end up being voiceless. Even the national leaders, cannot stand up, at the national representative level because of capacity. They need support.
- These are all good points. Disability is a cross cutting issue, and perhaps the movement is where the women's movement was 30 years ago trying to figure out how to ensure the inclusion of disability dimensions across sectors. Some of the organizations working in the disability issues are working with a narrow framework providing very important services but are not using a rights based approach. In terms of serving the advocacy capacity of DPOs they will not have the capacity to do it. So some of the effort of the community should be to include an aspect of participation in some of these agencies. Some donors are slowly adopting disability policy which might slowly force organization to make their development programs more inclusive. There is a lot of work to do on empowerment, but also work that needs to be done is to create links among DPO and other groups (health groups etc) Sometimes the community is fragmented and not linked to other groups.
- Claudio pointed out that he was inspired by HerWAI to prepare the assessment to the right to health. By changing some words you can have an assessment tool to build a campaign internationally on disability issues. This could be housed within the People's Health Movement who is very interested in disability issues.
There are two very important things to note that happened on 2008 for the right to health: (1) End of August Publication of the report of the WHO on the determinants on health. (2) PHM together with Medact published a Global Health Watch2 which is an alternative to the World Health Report published every year by the WHO which presents a biomedical approach to health issues. (3) The Global Health Watch presents the perspective of civil society regarding the most pressing health issues. The WHO report this time incorporated human rights approach and presents an opportunity to influence the WHO.
The WHO report, but is the IHP plus (international health program plus) is also using a human rights approach and trying to get the global actors to use an approach. A question was asked if PHM has printed any of the reports.
The US report was in the process of being printed.
Moderators: Alicia Ely Yamin, Raymond Onyegu
The moderator explained that because this is one of the newer groups of ESCR-Net there is a need to define how to work together. Whether this group should be more of an information sharing group or whether it should take on specific subjects like working on the MDGs or something even much more specific on TRIPS or maternal mortality. There are questions about specific issues and also about how the health group wants work together, and how ESCR-Net can facilitate that and what role they can play. Alicia also suggested that people look at the Health and Human Rights Journal and contribute to it. It is meant to serve as a voice for affected people to help them exercise the right to health.
- First, if the limit is in sharing information there can be a "paralysis in analysis" where the group shares information and do not agree on who is going to do what to whom. Second, In terms of working with The MDGs, as they have been applied now by setting goals are the furthest away from the rights to health approach possible because it is really going for a target and does not focus on the processes used to get there. It is too late to incorporate the human rights perspective in to the way the MDGs have been treated.
There was an opinion that on the idea of "analysis of enabling right to ensure the right to health", where there is a call for case studies on the right to water, housing, employment, food as part of the determinants of health. He agrees that this is an area where the group should do something together. This is a good area where we as ESCR-Net can strengthen recommendations and lobby WHO and governments to move on more decisive resolutions and recommendations.
The group then proposed that they should pick one or two thematic issues of one area and work on it together. It was proposed to go around the room to hear suggestions.
Suggestions from participants:
Right to health approach to health systems. We must use the features presented in Paul's document, to analyze and evaluate health systems.
the Network should create space for people to get help.
Litigation advice, the members need support from the network on this, especially in area of patents and IT. There is information on patents, but human rights advocates may not know how to interpret this information. It would be useful to get help on how to challenge the patents.
The focus should be on spaces and not issues, particularly the Human Rights Council. The chief space for right to health is the Human Rights Council. There are no NGOs working on the health mandate.
The group must post a list of the patent judgment, with details of the judgment on the websites. In terms of training, Indian lawyers have been trained. Lawyers Collective can train others if asked. We train lawyers on patents. The information is on the Net, making trainings easily accessible.
There is need for all activists, like the HIV activists, to be trained on patents.
The Special Rapporteur has a duty also and can send reports of complaints to the governments.
The group needs to reconcile one monitoring and evaluating systems. A right to health approach, with emphasis on M&E.
Increase social accountability, through litigation and other measures.
The other working groups, like budgeting, have cross cutting issues with health. Like the adjudication, budgeting, women and health etc. There is need for collaboration.
In some areas, you cannot get relevant information on the web.
The group needs to collaborate with the budget analysis group; this is a very fruitful area for the health group to get involved.
The right to health campaign is a very positive thing and Claudio invites all member of the health group to contact him to participate.
There is a link between Free Trade Agreements and their consequence on health that is linked with health impact assessment. There is a world-wide group on health impact assessment. The health group could negotiate with them is to add the health impact analysis in relation to the right to health to their health impact analysis, specifically on FTA but also on development projects.
Place a particular emphasis on right to health learning by increasing the interaction with beneficiaries for them to understand their rights and begin claiming them.
Plea to use the new optional protocol for health, the Net should be involved and take advantage of this instrument.
The group has to engage on PPPs (public-private for profit organizations) that are infiltrating WHO. The group should work with WHO, using a human rights framework, to oppose the influences that private donors and the big foundations have on earmarked funds.
The group should follow the line of social determinants of health and the World Health Report of 2008 to try to lobby WHO to change the discourse of the organization away from its current biomedical culture.
Work on imposing on governments to prepare progressive realizations for health in their annual and multi-annual plans.
All members should join the health list server of the Net.
An enormous task is to monitor a health system. We need to develop manageable, narrowed down systems of monitoring.
Create a case law database on all judgments on health, across the regions. There are a lot of judgments in different countries that have to be translated. This is something that members can start working in collaboration with the Net, so that once it is translated to make it accessible to everyone. Something like Lexus but more simple and understandable for activists.
The members work in different levels and do different activities. Members can collaborate by each focusing on their areas of specialty, e.g some on litigation, some on advocacy etc. The members can share more information.
The best way to collaborate is for all groups and individuals to focus on their specialties, and then incorporate the work that others are doing. The Net can then be used as the meeting point and collaboration center.
What appears to me about the network is strategy We in Angola, the donors are international, and they give the data, and most of the time they do not work with the community. The members who work with the donors, should give more information to the net. Report writing is limited mostly to the international org.
Another avenue for giving info from the ground is the health journal.
To go beyond support to the special Rapporteur. There is no right to health quote on the U.N ...The right to health group can act as a space, for dissemination of info and lobbying and training, and a channel to relate this to the U.N.
Moderators: Alicia Ely Yamin, Raymond Onyegu
Outcomes of the Discussion:
1. The group will focus on Access to Medicines
It was agreed that due to the diversity of the group we needed to find a broad theme that would be relevant for the work happening at different levels. Access to Medicine was agreed as an issue of common interest. There is a lot of cross-cutting interest in the issue. Also, it is in line with the expertise of the current special Rapporteur and provides opportunities for cross training and other types of actions.
While access to medicines will be the main area of focus, this will not exclude other information sharing and support actions among the group. Other issues that were considered include the link between the right to health and the right to housing, as well as the issue of right to health and discrimination. These could be explored in the future.
The overarching aims will be: to develop awareness and recognition at all levels and among different actors of access to medicine as a fundamental human rights issue, and to increase government and other actors' accountability for providing this access.
2. Specific Actions
- Trainings and capacity building
Trainings and capacity building for two target groups were identified: (1) Social Movements and (2) Litigators and judges, on issues that affect access to medicines including (but not limited to) IP, patents and trade regimes
One focus of the training would be to build capacity among the social movements so they gain good understanding on issues that affect access to medicine. It was suggested we focus on building capacity in different regions for trainers so they can train others in their communities. It was agreed that trainings should focus on social movements because the success in delivering access to medicines will be dependent on the action we have at the national level. Material already exists so we need to identify what it is and build on that. For judges it was pointed that we need to make sure judges understand what essential medicines are because as in the case of Brazil we can get into the problem that cases start coming up that have nothing to do with essential medicines and the budget starts being misdirected leaving asides issues like maternal mortality.
Ideas of what training should focus on include: IP, patent issues, trade regimes, transparency of registration and pricing and procurement, participation, human rights assessment of the national drug policies, workforce and other issues that impede the access to medicine.
- Gathering materials and resources
Create a resource page of existing services, orientating programs, articles, case studies, publications, websites etc. that exist around the right to health.
- Contribute to the reports and mandate of Anand Grover, current Special Rapporteur on the Right to Health. His first report will focus on Access to Health
Use the network, website and listserves to promote reports, information on site visits, on the presentation of complaints and other relevant information coming from the mandate
- Facilitate information exchanges as well as the creation of collaborations and links
A) Look at the synergy and space for collaboration among other working groups of the network and among relevant actors of the right to health that do not necessarily use a human rights framework.
B) Through the use of the listserv as well as direct outreach facilitate links among people that have strong experiences and those who need information or support.
C) Include information on the website on existing resources and venues to gains support in cases of emergency (starting a solidarity action, linking to the special Rapporteur etc)
- Implementation of decisions related to access to medicine
Follow-up on specific decisions at national levels and on concluding recommendations by treaty bodies to see the impact the resolution is having at the national level
3. Following the outline of possible projects, a Steering Committee with regional balance was formed:
- Hossam Baghat, Egyptian Initiative for Personal Rights (Egypt)
- Regis Mtutu, Treatment Action Campaign (South Africa)
- Marcella Vieira, Conectas (Brazil)
- Alicia Ely Yamin, Human Rights Program, Harvard Law School, USA
- Gunilla Backman, Consultant (Sweden)
- Representative from Thailand [A contact will be provided]
- Representative from Lawyers Collective
Identified Criteria for Work
- Look at the issue of traditional medicines
- Look at the issue of building effective health delivery systems
- We will aim to strengthen the capacity of social movements to work on health issues
- Looking beyond IP and patent issues and doing assessment/sharing of national drug policy, elements of that transparency of drug policy/ rational procurement and pricing,
- Looking at the role of courts as an important element
- The group will look at the inter-linkages with other issues particularly accountability and independent monitoring and the link between access to medicine to effective health.
- Access to medicines and sensible prescribing is included in the scope of the work