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HIV infection in children as an example of chronic disease management in French-speaking Africa


In the last 20 years, antiretroviral therapy has transformed the prognosis of children infected with HIV [1]. This once inevitably fatal disease is now a clinical condition that is often asymptomatic and stable over the long term, due to effective control of viral replication. What was unthinkable in the first decade of the epidemic is now common: young adults infected as infants leading a normal life under convenient daily treatment with no noticeable side effects. The challenge became that of treating infected children living in low-resource-endemic countries, and many actors and institutions are now trying to address it. It is estimated that more than 800,000 children are being treated in 2017, mainly in sub-Saharan Africa [2]. This is remarkable, even though the proportion of infected children treated, about one in three, is lower than that of adults. Antiretroviral treatment is made available by various international aid programs, but the implementation of treatment in children is still a complex process in clinical settings: it involves the management of a chronic disease, often based on the inadequate logistical support in many African hospitals that are more focused on acute care. Although the fight against HIV infection has received widespread support from the international community and has benefited from ‘‘positive discrimination,’’ the experience of treating HIV-infected children can serve as an example for other chronic diseases and provides hope on feasibility. Data from an African-French network for teaching and sharing experience (‘‘Enfants – VIH – Afrique’’: EVA) can illustrate concretely how urban hospitals in French-speaking western and central African countries have organized the care of HIV-infected children with remarkable results. The network emerged from twinning of North-South pediatric units through the ‘‘Ensemble pour une Solidarite´ The´ rapeutique en re´ seau’’: GIPESTHER) public interest group, created under the auspices of the Ministries of Health and Foreign Affairs in the mid-2000s. It consists of three Parisian hospitals and 16 pediatric centers in 13 countries in French-speaking Africa: all are centers for the care of children infected with HIV in their respective countries. The main vocation of this training network is the exchange of experience, the organization of training courses, and the production of tools to aid treatment (treatment guide, educational materials on therapy). By May 2017, 13 out of 16 participating centers were following nearly 6000 infected children, of whom 5200 were treated with antiretrovirals (Appendix 1). This is seven to eight times more children than in the whole of France and more than in the USA. Most children had been evaluated at least once for viral load, themain monitoring marker, during the previous 6 months according to WHO recommendations [1] at all but two centers. The proportion of children with an undetectable viral load (less than 20 or 50 copies of viral RNA, depending on the test used) was 37– 87%. It was above 70% for seven of the 11 analyzable centers. These overall virological results are remarkable: an undetectable viral load shows that the treatment is appropriately prescribed and adherence is good, guaranteeing clinical efficacy withoutthe risk of selecting resistant viral strains. These results were obtained despite very limited medical personnel (approximately 20 fulltime equivalents) available in these polyvalent pediatric departments (Appendix 1). The modest medical human resources available are effectively complemented by the presence of other professionals, whose role is essential in the organization of the management of a chronic disease. A dedicated pharmacist, psychologist, and social worker play major roles in the long-term follow-up of treatment. Another crucial element is the close link established with the community, which is now recognized as making a major contribution. A process of delegating tasks through the active involvement of health workers and nurses in the followup of children partially compensates for the medical shortage. During 2016, more than 500 new children started treatment. The mean proportion of children lost to follow-up during the previous year was 3.4% [range, 0–14] of all children treated in 11 of the 13 centers. However, two other centers in countries suffering from severe politicalturmoil had many children lost to follow-up: 186 of 370 children treated in Chad and 111 of 247 in Burundi. Several types of paramedical activities have been set up in the network centers for the follow-up of children infected with HIV. Therapeutic educational workshops have been opened in all centers. Most have organized support groups for teenagers and mothers of young children. Nine of the 13 sites provide home visits for child follow-up and therapeutic support together with an active link with one or more community associations. All but two centers are associated with at least one national and/or international research program (Appendix 1). The activity described here is that of large urban hospitals and is not representative of the activity gradually being deployed in the interior of countries in what is being called scaling up. The estimated total number of children to be treated outside the reference centers is very imprecise for the countries concerned, but is probably between 20,000 and 50,000 children. The conditions of treatment in secondary health centers or clinics are naturally different from those in the better-equipped centers. However, scaling up necessarily implies the presence of reference centers to ensure the dissemination and advancement of knowledge, expertise of working in difficult situations, and evaluation of programs. Only one center was able to set up offsite consultations with a specialist in the peripheral centers. In addition to specific skills for following up children attending a non-specialized center, these consultations may also contribute to training and support for local teams. However, these offsite consultations require specific logistic and financial support. The North-South twinning in the network was unanimously appreciated and considered to be useful for the implementation of these therapeutic programs. In return, the lessons learned by the northern players from the network’s teams were extremely beneficial to their professional practice, based for the most part on families of African origin. These partnerships complemented the input provided by international institutions (WHO, UNICEF, the Global Fund, etc.) and helped establish these ambitious therapeutic programs that many thought impossible in Sub-Saharan Africa. Although the fight against HIV infection has received widespread support from the international community and has benefited from positive discrimination, the experience of treating HIV-infected children can serve as an example for other chronic diseases and provides hope concerning feasibility. The limited medical human resources can be offset by the presence of paramedical and community actors through the successful delegation of tasks. Partnership with the centers of northern countries, with an understanding of the local conditions, can also help implement future programs. Financial support The EVA network is financed by the World Fund’s ‘‘French 5% Initiative’’. Disclosure of interest The authors declare that they have no competing interest. Acknowledgements The EVA network would like to thank Dr. Gilles Raguin and Anne Beugny from Expertise France for their constant support. Members of the EVA (Enfants et VIH en Afrique) network: Alain Azondekon, hoˆpital d’Instruction des Arme´es; Marcelline d’Almeida, centre national hospitalier et universitaire Hubert K.MAGA, Cotonou, Be´nin; Diarra Ye´ and Sylvie Ouedrago, CHU pe´diatrique Charles-de-Gaulle; Caroline Yonaba, CHU Yalgad Oue´draogo, Ouagadougou, Burkina Faso; He´le`ne Bukuru and Martin Nduwimana, CHU Kamenge´, Bujumbura, Burundi; Ida Penda, Hoˆpital Laquintinie, Douala; Anne Esther Njom Lend, centre hospitalier ESSOS, Yaounde´, Cameroun; Eboua Tanoh Kassi F., CHU de Yopougon; Madeleine Folquet Amorissani, CHU de Cocody, Abidjan, Coˆte d’Ivoire; Ste´phane Blanche, hoˆpital Necker-Enfants Malades, Paris, France; Catherine Dollfus, hoˆpital Armand-Trousseau; Albert Faye, hoˆpital Robert-Debre´, Paris, France; Mariam Sylla, Director, CHU Gabriel Toure´, Bamako, Mali; Wafa Alkassoum, Ousmane Maman, Hoˆpital National, Niamey, Niger; Jean Chrystosome Gody, Complexe Pe´diatrique, Bangui, RCA; Aminata Diack, Hoˆpital d’enfants Albert-Royer; Cheick Tidiane TALL, Executive director, Dakar, Se´ne´gal; Jose´phine Toralta Nodjitoloum, Hoˆpital de la Me` re et de l’Enfant, Ndjame´na, Tchad; Yawo Atakouma, CHU Tokoin/Sylvanus Olympio, Lome´, Togo. Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at 007. References [1] [2] pdf. M. Syllaa,c , C.T. Tallb , S. Blanchec,d, * a Centre hospitalier universitaire Gabriel Toure´, Bamako, Mali b Health program management, reseau EVA, 9993, Sacre´ Coeur3, Dakar, Se´ne´gal c Unite´ d’immunologie he´matologie pe´diatriques, hoˆpital Necker-Enfants Malades, assistance-publique – hoˆpitaux de Paris, 149, rue de Se`vres, 75015 Paris, France d Unite´ d’immunologie he´matologie pe´diatriques, hoˆpital Necker-Enfants Malades, 149, rue de Se`vres, 75015 Paris, France *Corresponding author. Unite´ d’immunologie he´matologie pe´diatriques, hoˆpital Necker-Enfants Malades, 149, rue de Se`vres, 75015 Paris, France E-mail address: Received 22 September 2017 Accepted 10 December 2017 Available online 1 February 2018