5th Caribbean Conference on Sickle Cell Disease and Thalassemia
The Fifth edition of the Caribbean Conference of CAREST network “Sickle-cell anemia and Thalassemia” took place in French Guiana, from October 24 to 26, 2018. With about 150 delegates (physicians, researchers, and associations of patient families) this latest edition took a more significant expansion than the previous conferences. Apart from the faithful participants from the Caribbean islands, this international conference also attracted experts from the greater Caribbean, and experts from the USA, India and Continental France.
In compliance with the resolutions of this network advocating the organization of conferences in different countries in the Caribbean Area, after Guadeloupe, Cuba and Jamaica, French Guiana was chosen for the latest edition. On this occasion, issues specific to French Guiana were raised, namely an advocacy to resume blood donations, which were stopped since 2005 because of the risk of Chagas disease transmission. Brazilian experts who took part in this conference shared their experience to counter this problem. The strategy applied consisting in reliable tests to screen the parasite causing this disease allows to avoid the losses of blood donors, while having secured donations. Such strategy which could be applicable to French Guiana is a major issue for the treatment of sickle cell anemia and thalassemia. Blood transfusion remains a vital therapeutic approach for some patients affected by such pathologies.
This conference was co-organized with the excellence lab GR-Ex, which gathers thirty laboratories and clinic cohorts developing research on the biology of normal and pathologic red cell. This network is coordinated by Professor Olivier Hermine, who is from French Guiana origin. A Professor in hematology, he was recently elected at the Sciences Academy.
We also benefited from the participation and active support of The Club du Globule Rouge et du Fer (CGRF), a work group of the French Society of Hematology.
The opening ceremony took place in the magnificent hotel of the town of Cayenne. Among the personalities who were present, the Director of ARS in French Guiana, Mrs. the Mayor of Cayenne, the President of French Guiana University and the directress of the Cayenne hospital Center expressed their opinions; and also did the organizers, Pr. Narcisse Elenga, Jacques Elion, Olivier Hermine Drs. Lisiane Kéclard, René-Serge de Neef and Marie Dominique Hardy -Dessources.
Various issues were discussed during the two days of conference which took place in the University of Guiana. The speeches dealt with clinic problematics related to the progresses on caretaking and on some aspects of fundamental research, in a context associating, on one part, the hope of an access to innovating treatments including genetic therapy, and on the other part, the absence of screening at birth (neonatal screening), in many territories of this great Caribbean Region, a key step for the prevention of complications associated with such pathologies. A large part was devoted to neonatal screening of sickle cell anemia in the Caribbean area including complex situations in countries such as Venezuela and Costa-Rica.
A session of half a day specifically devoted to associations of patients took place.
We shall mention two major speeches of this conference:
- The contribution of a young patient, David Issom, on the issue ‘’expert patient ‘’. A doctoral student, in overall Health, this young patient affected by sickle cell anemia, based on his experience, showed that it is possible to better understand one’s body with e-health tools (example a chip incorporated in the hand) and to react in order to reduce the frequency and intensity of painful crises which the patients affected by sickle cell anemia undergo in case of a seizure. With the development of new technologies, solutions exist allowing the patient to better manage his disease. The objective of his doctoral training is to push forward research in e-health in order to live better with sickle cell anemia;
- The debate during the closing session of the conference was a challenge chosen around the issue: “sickle cell anemia, what is the priority: Recover from sickle cell anemia, (bone marrow transplant, Pr. Mariane de Montalembert – France) or Improve the caregiving (Russel Ware, USA). The arguments put forward by Pr. Ware seemed to have convinced the largest number. He recalls that each year about 400.000 births of babies affected by sickle cell anemia originating predominantly from Africa and India. It is estimated that because of a lack of neonatal screening and of an adapted caregiving, 50 to 90% of the babies born in Africa die before the age of 5. Simple interventions, including neonatal screening, an antibiotic therapy (penicillin), education of the families, treatment with hydroxyurea (the only medicine which is presently efficient) allowing to modify the life of the children who are born in economically deprived areas, while curing with a bone marrow graft or genetic therapy are very costly options which can be accessible only to a small number of patients. A study made in Africa, coordinated by Prs. Tshilolo and Ware, presented in a plenary session at ASH 2018, and recently published in NEJM a few weeks after the conference, confirms that hydroxyurea significantly reduces complications and mortality related to sickle-cell anemia.
Prior to the conference, an information session/debate for the students of French Guiana University and for the 12Th grade students was also organized on two topics: professions on research and international exchanges for training and research.
The success of this conference was made possible thanks to the financial support of our main public sponsors (ARS Guyane, ARS Guadeloupe, University of French Guiana, la Communauté d’Agglomération du Centre Littoral de Guyane, Hospital Centers of Cayenne and West Guiana, the Reference Center of Sickle Cell Anemia for the Antilles and French Guiana, Inserm, CGRF, GR-Ex) and private companies (pharmaceutical laboratories and health services).
The objectives of CAREST association were the core of this conference :
- To communicate on progresses made in caretaking of such pathologies in order to favor a better dissemination of information and contribute to a better training of health professionals who will take care of such patients.
- To promote the creation of partnerships to remedy the difficulties faced by some countries for caretaking and facilitate the development of research projects to contribute to therapeutic progresses
After the conference, there was a general meeting of CAREST, during which it was namely reminded that the mandate of the board of directors expires soon. One of the challenges in 2019 will be to insure the renewal of the board of directors, while insuring a good representativity of the country of origin of all the members of the association. The other major objective is the creation of working groups specially dedicated to the implementation of new screening programs, the development of inter-Caribbean research programs, and communication.
The reflection about the location of the next conference started.