Overview of General Assembly 2021 –

• Post by: Dr Marie-Dominique HARDY-DESSOURCES
• 24 February 2022
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Dear Members & Partners of CAREST

Thank you for attending this General Assembly on 27 January 2022, which is being held in a hybrid mode to respect the current COVID restrictions. These protective measures continue to be necessary to reduce the spread of the SARS-COV-2 coronavirus and the consequences as serious as those experienced during the previous fourth (4^th) wave that severely impacted Martinique, Guadeloupe and French Guiana during the months of July and August of 2021. Initially scheduled for 25 November 2021, this meeting had to be postponed due to an insurrectionary situation that resulted in immobility at that time in Guadeloupe and Martinique. While the rebellion was initiated by opposition to mandatory vaccination of health care providers, the anger expressed is also attributable to the very difficult economic and social context that has been brewing for a long time. A low vaccination rate and a lack of confidence in COVID-19 vaccines is a situation that seems to be shared in all our Caribbean countries/territories. The possible negative impact for the sickle cell patients will be discussed during this meeting which must remain a privileged moment of dialogue and exchange and the opportunity to i) examine and assess the impact of the actions carried out during this year 2021 and ii) contemplate the future steps & directions to be given to our network

• Looking back at 2021

In terms of results, the actions carried out remain in line with our priorities aimed at extending access to early detection and ensuring better prevention of major complications of the disease. However, we had difficulties in progressing in line with the expectations we had set for this year and, as a result, we share the disappointment for halted programs and initiatives.

1. Access to neonatal screening for sickle cell disease.

1.1. First we recall the screening programs conducted by the University Hospital of Guadeloupe for Grenada and Antigua. These programs are supported by a funding “Interreg V – Caribbean” which ends in December 2021. Thus, Grenada was able to benefit from subsidized screening for 2 ½ years, performed by the Hospital of Guadeloupe at a preferential rate of 6 €, cost bearable for their health authorities. The screening program for Antigua, which was launched later also on the basis of a subsidized rate, did not complete its planned execution roadmap for 2 years by the end of 2021. Nevertheless, avenues for the continuity of these programs have been analysed through dialogues in two forums. The first forum included: Dr. Lee, head of the diagnostic laboratory in Guadeloupe, the partners from Grenada and Antigua, and CAREST. The second forum included: the Regional Health Agency of Guadeloupe and CAREST, respectively the lead and member of the steering committee of the programme “Interreg V – Caribbean” dedicated to the development of cooperation between the French West Indies and Guiana and member countries of the Organization of Eastern Caribbean States (OECS).

1.2. We acknowledge the outstanding support provided to patients by the Sickle Cell Association of Antigua & Barbuda, chaired by Dr Edda Hadded, in the form of a sheltered workshop.

1.3. We commiserate gravely the immeasurable loss of the Grenada team following the untimely death of the young Dr. Darville Raye, who was an unwavering pillar of care for sickle cell disease children. We express our deepest condolences to his colleagues of the pediatric service of the General Hospital of Saint-Georges, his young patients and his family.

1.4. We will also see the progress of the project “Introduction of Neonatal Testing to Primary and Secondary institutions in Dominica” led by Mrs Kellyn Georges, representative of Dominica on our Board of Directors, with the support of Dr. Seannel David, neonatologist and Mrs. Fiona Harris-Glenville, nurse.

1.5. We will also have to address new requests for access to screening such as the requests that came from the Sickle Cell Foundation of Belize.

2. Co-construction of the project Scorecard

We will revisit and discuss the Scorecard project, led by Pr. Jennifer Knight-Madden with the objective of setting up an online platform providing information on the management of sickle cell disease in the Caribbean, in particular, regarding the access to neonatal screening and the quality of early care. The aim is to highlight the good management practices required to improve the quality of life of sickle cell patients and to elicit the support of Caribbean political authorities to facilitate the development of these practices in all countries/territories. We will report on the progress of this project, particularly the search for funding and the constitution of pilot teams.

3. Prevention and management of stroke in children with sickle cell disease in the Caribbean

Although the stroke is a complication affecting about 11% of children with sickle cell disease and causing frequent motor and cognitive sequelae, Transcranial Doppler (TCD), an annual examination to assess this risk, is not widely practiced in the Caribbean. Pr. Narcisse Elenga will report on the assessment conducted under his coordination aimed at: 1) evaluating already established programs for assessing stroke risk in the region for their effectiveness; 2) identify the training needs in the use of the TCD for the countries/territories that wish to implement this measure for the prevention of stroke in sickle cell disease children, and 3) publish the information collected.

4. Key events of the year 2021

In spite of the feeling of inactivity mentioned, we must acknowledge 2 events that mobilized the members of the network during this year 2021, namely: the Sickle Cell in Focus conference, (SCiF) and the world sickle cell day.

4.1 Sickle Cell in Focus conference (SCiF) conférence. We would like to congratulate our colleagues from Jamaica, Prs. Monika Asnani and Jennifer Knight-Madden, who contributed to the co-organization of this conference. The conference took place virtually on September 30 and October 1, via a unique collaboration between University of West Indies and the National Heart, Lung and Blood Institute of United States. On this occasion, Prs. Asnani & Knight-Madden contributed to enhancing the visibility of sickle cell disease management programs in the Caribbean region through their respective communications “COVID-19 and Sickle Cell Disease” and “Access to new therapies”.

4.2 World Sickle Cell Day -2021. The organization of events dedicated to the World Sickle Cell Day also gave rise to many exchanges, creation of videos (Haiti, Guyana), logos (Cuba), productions, information shared in part on the CAREST website and again with prospects for optimization of these productions..

• What lies ahead for 2022

Beyond the continuation and realization of ongoing projects, we will have to give a very special color to the year 2022, which will mark the tenth year of the creation of the CAREST network. We were convinced at the previous GA of the need to communicate and interact more regularly through remote meetings. We have clearly not achieved this goal. Thus, we will take up this challenge to optimize the implementation of ongoing projects and work on the programming of events to be organized to mark this tenth anniversary of CAREST during the year 2022.

1. Structuring working groups. IIt is, therefore, important to reconstitute and revitalize the different workshops: “Research”, “Screening and Early Care” and “Communication”.

2. Raising Awareness. We will be asked to take a position on a partnership proposal submitted by Dr. Alexander Kumar, global health physician and photographer. He has worked to share images and stories from around the world to inspire the sickle cell community and raise awareness of the disease to help change the world’s views about it. From this partnership, we could develop actions for the celebration of CAREST’s 10th anniversary and contribute to one of our major objectives: to facilitate the recognition of sickle cell disease as a public health priority in the whole Caribbean.

• Financing

We will have to continue the search for sources of financing for the development of our projects. This question will be more specifically treated by our treasurer, Dr. Lisiane Kéclard

I would like to thank you once again for your renewed presence and continued support for the CAREST. Additionally, I welcome the presence of the new members

“Where there is a will there is a way”, Winston Churchill

Marie Dominique HARDY-DESSOURCES