Comprehensive care: the role of France

Within the framework of the European Program for Action to Confront HIV/AIDS, Malaria and Tuberculosis, France, which has the benefit of considerable experience in the area of comprehensive care, would like to form a European action team to work on this topic, with the aim of drawing up a European Handbook for Comprehensive Care.

Four preliminary meetings have been held: on 29th April 2009 at the French Ministry of Foreign and European Affairs (Ministère des Affaires étrangères et Européennes - MAEE), on 3rd June during the ESTHER Day, on 18th June (during the Solidays Festival), and on 3rd July, on both occasions at the French Ministry of Foreign and European Affairs. These meetings served to clarify the general project and establish the main concerns. The aim of this concept paper is to present the overall project and its priorities, and each party is invited to modify it, or add or highlight the issues which he considers to be important. 

1 - Context

The European Program for Action to Confront HIV/AIDS, Malaria and Tuberculosis by external actions (2007-2011), adopted by the Council of the EU in 2005, proposes a collective Community action with the aim of making up the financing shortfall to meet the sixth Millennium Development Goal (MDG). It consists in supporting programs to combat the three major pandemics run by developing and middle-income countries, as well as action at international level in areas where the EU can provide added value.

At national level, the main challenge is to develop political dialogue, capacities for action and financial resources. The particular aims of the program at regional and global level are: developing access to medication, regulatory capacities, human resources in the health sector, research and new intervention tools.

The 2009 report of the Commission on the advancement of the Action Program highlights the progress made since its launch, but calls for greater efforts on the part of the members at regional and global level. It emphasises the promotion of human rights and parity between the sexes, the reinforcement of the health systems, dialogue with partner countries, increased public development assistance and access to medication.

The report also proposes a division of labour at European level in the priority sectors in order to develop a more efficient political dialogue, to share expertise and coordinate action means, and to better collaborate with people affected by the pandemics, as well as with civil society and international organizations.

This division of labour will take place through the putting into place of EU Action Teams. Each team will be run by a Member State and will be responsible for one of the priority topics of the Action Program. Its role will be to reflect on ways of improving the implementation of Action Program recommendations.

Each team will be made up of Member States, organizations of civil society, public-private partnerships and international organizations. The countries with the responsibility of heading the teams will be entrusted with the implementation and coordination of these teams.

The Member States who have expressed an interest in forming and directing action teams are The Netherlands (HIV/AIDS and human rights), the United Kingdom (prevention of HIV/AIDS), Germany (HIV/AIDS and gender issues) and France (comprehensive care). The Commission has expressed interest in heading a team on the access to affordable medicine. It will also be in charge of coordinating the work of the different action teams, thus preventing any overlap on the part of the various teams.

A meeting on the European action teams, attended by France and the Netherlands, was held on 2^nd June 2009 at the Commission in order to discuss the mandate and the aims of the action teams, the role of the member countries, the working methods and the involvement of civil society.

The work of the action team on comprehensive care will allow us to draw up recommendations, which will be gathered in a European "Handbook" of comprehensive care. The aim of this handbook will be not only to launch an international reflection on comprehensive care, but to act as a reference guide for the different care players, both at national level and in a perspective of cooperation between European countries in the combat against the three epidemics. Other possibilities can also be envisaged, such as the implementation of a European training course in the area of comprehensive care.

2 - The French experience

As France has a considerable amount of experience in comprehensive care, it would seem logical that she proposes to coordinate a European action team on this topic. France is one of the Europe countries most affected by HIV/AIDS, and has provided a quality reaction since the beginning of the pandemic.

The combat against the illness does not just involve providing medication, but should also take into account the social, cultural, economic and legal implications of the illness, in order to ensure that the rights of sufferers are respected. Particular attention should be given to vulnerable people and victims of discrimination, in particular, women and sexual minorities.

In order to improve this comprehensive care, the pooling of expertise between the different partners is essential. The programs supported by France are thus the result of a close collaboration between different parties: governments, community leaders, associations of people living with HIV/AIDS, socio-health players, etc... Such cooperation brings a more global approach to the problem and therefore more efficient efforts to combat the illness.

This experience in the area of comprehensive care is based both on actions at national level, and multilateral and bilateral collaboration at international level.

At national level, the objective of the COREVIH (Comités de coordination régionale de la lutte contre le VIH - Regional Coordination Committees for the combat against HIV) is to favour the comprehensive care of people living with HIV. Their particular structure facilitates contact between the hospital and the external environment, between the health and social sectors, and between patient associations and patient support. They have three missions: the coordination of players involved in the fight against HIV, the collection and analysis of medical-epidemiological data and the contribution to the improvement, evaluation and harmonization of professional practices. So, in the aspect of the combat against HIV/AIDS (and also tuberculosis) at national level, there is a major coordination effort between specialized hospital teams, general practitioners of patients, and associations involving the patient and those close to him.

The French associations also play an important role. The aim of the association Sidaction, for example, is the collection and distribution of funds between research programs, patient care and the prevention of the epidemic, both in France and internationally. AIDES was created in 1984 with the aim of bringing together people directly or indirectly affected by HIV/AIDS to help them deal with the illness. Several associations are regrouped in the Coalition PLUS forming a common structure to promote a collective Community approach in the combat against HIV/AIDS.

France, conscious of the role played by the associations in the combat against VIH/AIDS, supported the FSP program "Support for civil society for access to anti-retroviral treatment of HIV/AIDS in the developing countries". This project supported the multi-association ELSA platform (Ensemble pour Lutter contre le Sida en Afrique - Together, let's fight AIDS in Africa), allowing it to reinforce its action for the benefit of associations of southern countries. The associations that benefit from the ELSA project are mainly African partners, representing 90 associations in 27 countries.

At international level, the promotion of comprehensive care takes the form of strong support of multilateral and bilateral players.

Concerning multilateral action, France plays an essential role in the Global Fund to Fight AIDS, Tuberculosis and Malaria, which encourages the involvement of civil society in the combat against the three illnesses, takes into account the specificities linked to gender and to sexual minorities exposed to HIV/AIDS and finances the reinforcement of health systems. France is also very involved in the actions of UNAIDS, such as campaigns for the free circulation of people living with HIV/AIDS, and in those of other multilateral organizations which promote comprehensive patient care, such as the IUATLD (International Union Against Tuberculosis and Lung Disease) or Stop TB or the Roll Back Malaria (RBM) Partnership.

As for bilateral action, the Mission for Relations with Civil Society carries out numerous actions aimed at reinforcing the capacities of southern organizations: networking arrangements, campaigning, combat against discrimination, etc... Partnerships have also been developed with private players in order to combat HIV/AIDS, such as the project "PME sans sida" (AIDS-free small and medium-sized companies) on the Ivory Coast, or a program of reinforcement of the combat against HIV in the mining companies of Guinea. The French Development Agency (Agence Française de Développement - AFD) supports notably the association Partenaires contre le sida (Partners Against AIDS), which aims at reinforcing the capacities of players of the private sector of developing countries, through the provision of high-quality technical expertise.

Also the ESTHER Public Interest Group (Ensemble pour une Solidarité Thérapeutique Hospitalière en Réseau - Network for Therapeutic Solidarity in Hospitals) has the mission of supporting partnerships that enable a sustainable interconnection of patient care around hospitals and social networks. The ESTHER European Alliance is made up of ten countries, and aims at favouring networking between health professionals and associations of the European region in order to promote efficient comprehensive care. Through ESTHER, partnerships have been developed with 18 countries of Africa and Southeast Asia.

3 - Comprehensive care and European collaboration

During the consultation of the involved parties of the European Action Program in Brussels and Dakar in November-December 2008, the participants stressed the necessity of promoting comprehensive care of those suffering from HIV/AIDS, malaria and tuberculosis. The emphasis on the access to medication should not reduce the need for comprehensive care of patients and their families.

This comprehensive care centred on the person should notably be centred on the family and the community of the patient, and include psychological support, clinical care, economic and social support, human rights, as well as the support of families and communities affected by the pandemics.

The involved parties also emphasized the necessity of promoting integrated approaches to combat co-infections such as AIDS-tuberculosis. The important thing is to ensure continuity of care and patient support, thanks to improved coordination between public and private health services, and with programs of home care.

A certain number of recommendations were made by the involved parties in the framework of the Action Program:
- to promote comprehensive care through the elaboration of directives and sharing of expertise with the partner countries
- to acknowledge the importance and contribution of acquired experience
- to implement policies against HIV/AIDS, malaria and tuberculosis in the workplace, to promote the prevention of illnesses among the staff, and allow the infected persons to benefit from programs of social security and employment
- to support research capacities in partner countries to gather data on the illnesses and distribute information on the good practices to be followed
- to ensure technical support, financing and reinforcement of the capacities for the implementation of comprehensive care policies, including the "care of the carers", the transfers of funds, the social security programs for the most vulnerable, as well as assistance to patient networks and to community-based organizations.
- to engage in dialogue on ways of improving the school attendance of children affected by HIV/AIDS, to support the initiatives aiming at improving literacy of people on medication, to provide technical support and advice to improve the access of sufferers to the legal resources of their country.

The creation of a European work team in the framework of the Action Program offers the possibility to continue and deepen the European collaboration implemented in the context of comprehensive care.

Several European NGOs are also very involved in the promotion of comprehensive care, such as the GNP+ (Global Network of People living with HIV/AIDS), based in the Netherlands, or also the United Kingdom-based International HIV/AIDS Alliance, the largest EU organization for the combat against HIV/AIDS, aimed at mobilizing and reinforcing the communities to empower them in their combat against HIV/AIDS. Also, the work group on the HIV/AIDS, CONCORD, which is a group of European NGOs working in the area of HIV/AIDS and of development, could play an important role in supporting the European team project.

The approaches made to these different European players, as well as the collaboration with other EU countries interested by the topic of patient care, will allow the implementation of truly common strategies in the area of comprehensive care.

4 - Priorities of the action team

Four preliminary meetings were held, bringing together experts and representatives of the civil society: on 29th April 2009 at the French Ministry of Foreign and European Affairs, on 3rd June 2009 during the ESTHER Day at the European Hospital Georges Pompidou, on 18th June at the French Ministry of Foreign and European Affairs with numerous associations of the southern countries during the Solidays Festival, and on 3rd July also at the French Ministry of Foreign and European Affairs. These meetings allowed us to specify the general framework of the project and to establish the main issues on which the European action team should focus. For reasons of clarity, these main topics were also divided into major categories. The European comprehensive care handbook is therefore intended to deal essentially with the following concerns:

a - Clinical aspects

• multi-disciplinary care
• care quality
• quality prevention (primary and secondary) 
• paediatrics 
• nutrition
• prevention of mother-to-child transmission (PMCT)
• quality of the evaluation and follow up
• evaluation and modernisation of laboratories in sites where diagnosis are carried out, not only of HIV (viral infection), but also of all associated infections, in particular tuberculosis. This would contribute greatly to the reinforcement of local capacities in the area of health, with a major short-term interest for diagnosis and follow up of the three pandemics, and a long-term interest for the performance of diagnostic tools in the more global context of health in the southern countries.
• benefits of acquired experience
• research

b - Economic, social and psychosocial aspects 

• reception, information and guidance of patients
• psychosocial accompaniment 
• psychological care
• professional training
• reinforcement of health systems
• skills reinforcement
• support of national programs, based on existing structures
• multi-sectoral cooperation 
• putting into place of areas of exchange
• networking, in particular between public and private hospitals and care centres, starting with civil society and people infected and/or affected by HIV. In this way, the development of platforms, such as the Country Coordination Mechanisms, supported by the Global Fund to Fight AIDS, Tuberculosis and Malaria, or health platforms between hospitals and associations accompanied by ESTHER, could facilitate the access to care and improvement of the quality of services.
• benefits of acquired experience
• research

c - Legislation and Human Rights

• respect of patients' rights
• access to care
• combat against discrimination
• care of vulnerable persons
• mediation between patients and public powers
• political will
• involvement of territorial collectivities
• benefits of acquired experience
• research

d - Family and community

• community mobilization 
• role of associations
• care of orphansbenefits of acquired experience
• research

This list is not definitive and all interested parties are free to add or modify topics. Each party is also invited to contribute on the topics related to his activity and his experience. This may deal with the importance that should be given to these topics, the good practices to promote, or concrete examples of positive or negative experiences in the area of comprehensive care, etc...

Numerous publications on the topic of the comprehensive care already exist at international level, and the aim of the European handbook is not to redo that what has already been done. This is why the application of acquired experience can constitute a real added value for this handbook, so the gathering of the experiences of all parties in the area of comprehensive care is a key point.

Also, if this turns out to be relevant, the handbook should aim to give equal importance to each of the three pandemics.

5 - Action plan

Those interested in this initiative may modify this concept paper from now on to specify or include the elements that they consider to be the most important. The first contributions to the concept paper are presented below. The document is on line on the site vih.org in French, English and Spanish, and each party can contribute through the site or by sending an email to Marie Ahouanto.

At the end of Summer 2009, the concept paper will be presented to the European Commission in order to set out the project to be undertaken by France. Following validation of this document by the Commission, the other members of the EU interested in the topic of comprehensive care will be able to participate in the work of the European team headed by France. At least two other European countries will have to be involved in order to form an action team. At present, Spain could be interested by this project and the Spanish presidency of the EU in 2010 could be a way of promoting the initiative.

The players already consulted, as well as the persons interested by this project, are invited to also approach their networks, in order to encourage participation of representatives of civil society and of experts from other countries in the reflection. The associations can also encourage other countries to participate in the European action team.

This process should conclude, at the end of 2009 or the beginning of 2010, in a first meeting of the entire European action team, which will include Member States, experts and organizations of North and South. The work of this action team will then allow the elaboration of a European handbook of comprehensive care, aimed at both European players and players from the southern countries.