General Assembly 2020 – President’s report

General Assembly 2020 – President’s report

Dear members, colleagues and friends

It is a real pleasure to welcome you to this General Meeting at the end of this very special year, marked by this pandemic that has shaken our professional, associative and even family life. My thoughts are with those of you who have been severely affected by this coronavirus, either directly or through someone close to you.

The imposed exercise of the moral report should lead us to take stock of the past year, 2019. However, due to the calendar of our General Meetings, the assessment of this year 2019, which already seems so far away, has already been widely presented during our last meeting. We will therefore focus more on the year 2020 with, nevertheless, a reminder of the highlights of the year 2019.

2020 was shaping up to be a year full of promise, with the opportunity to meet with many of us at the Global Congress to be held in Paris from 7 to 9 April 2020. With the pandemic, which led to the cancellation of these promising meetings, we have had to modify our organization and the management of our activities, always keeping our focus on the implementation of measures that promote optimal management of patient care. In the context of this health crisis, a good awareness of the protective measures for this vulnerable population at Covid-19 was immediately necessary.

Communication via the website

The CAREST website emerged as one of the appropriate tools to relay communication messages designed to inform and educate patients on barrier gestures.

We quickly set up a “COVID-19” page with different sections:

COVID-19 and sickle cell disease – for the dissemination of information and recommendations to patients and professionals (transfer to the EuroBloodNet site and access to a selection of articles); to generate exchanges within the network about patients’ feelings.  Thus, we published a file transmitted by our colleagues of the Sickle Cell Disease Patient Association of Antigua & Barbuda.

COVID-19 in the Caribbean – for the dissemination of data on the spread of Coronavirus in our region with regular updates.

The events dedicated to World Sickle Cell Day 2020 also had to be held virtually and we relayed some of them on the website. CAREST participated in the webinar organized by the GASCO network “Global Alliance of Sickle cell Disease Organizations” with a presentation by Jennifer Knight-Madden, who spoke about sickle cell disease in the Caribbean as part of the focus of this webinar on the campaigns against sickle cell disease around the world (Africa, South America/Latin America, the Middle East, South Asia, Europe and North America, …).

But we were also keen to pay tribute to Dr. Waveney Charles, a pioneer in hematology in Trinidad & Tobago, who played an important role in the emergence of the CAREST network alongside his collaborators, Drs. Althéia Jones-Lecointe and Gillian Wheeler.   

Although the updating of this website is the responsibility of the Communication Group, we remind you that you are all invited to contribute to it. 

It is clear that this collaborative contribution must be amplified in order to provide the most recent information, thus improving the attractiveness of this site.

Access to neonatal screening for sickle cell disease

During this year, we have maintained our mobilization to facilitate access to neonatal screening for sickle cell disease by supporting screening programs eligible for “Interreg V – Caribbean” funding. As a reminder, this funding is dedicated to the development of cooperation between the French West Indies-Guyana and the member countries of the Organization of Eastern Caribbean States “OECS”.

  • This is the case for Grenada, which was able to restart in April 2019 its screening stopped after the pilot study conducted in 2014-2015.
  • We finally managed to launch screening for Antigua last September.

Our colleague, Dr. Ketty Lee, head of the laboratory for the diagnosis of hemoglobinopathies, will give us a more detailed update on these screenings, as well as Trinidad’s expectations for screening in its North-West region.

  • For Dominica, prior to the implementation of screening, in agreement with our colleague Kellyn Georges representing Dominica, we have validated a need for training of health professionals so that they can better ensure the management of sickle cell disease.

The evaluation of screening remains one of our unresolved issues. A project involving different Caribbean partners seems possible and will be presented to us by our vice-president, Prof. Jennifer Knight-Madden: Scorecard Project (Perspectives 2021).

 Training of health professionals

Although training needs were well identified, the training programs could not be put in place.

  • Training of health professionals in Dominica: we opted for a remote training plan for health professionals in Dominica. We supported Kellyn Georges’ efforts to the Dominican Ministry of Health by showing CAREST’s support for this training plan provided by colleagues from sickle cell disease centers in Jamaica and Guadeloupe.
  • Training for screening for the risk of cerebral vasculopathies for our partners in Grenada and Trinidad. We will need to determine the most appropriate solutions to address these demands during the course of 2021.

 Research

Opportunities for the development of collaborative projects have been identified. 

  • Impact of dengue fever on sickle cell disease patients and search for determinants of severity prognosis.
  • COVID Registry: COVID-19 cases in the sickle cell population in the Caribbean

The establishment of this registry is based on the proposal to participate in the global registry established by the Medical College of Wisconsin and at the same time have the opportunity to benefit from a Caribbean registry.  To date, we have a base with the cases of Guadeloupe. We know that each country has control over its data and that agreements must be sought for the sharing of these information. It is time to review this issue.

Dr. Marc Romana co-pilot with Prof. Caroline Le Van Kim of the research group will say a few words about these programs.

 Perspectives

We already have ongoing programs to pursue and projects to complete. We will thus have to reflect together on the next steps to be taken in ongoing screening programs, should we move towards rapid methods? 

We have expectations to take into account in terms of training.

We will also have to take a clear position on the conduct of research programs.

We had planned the programming of our next Caribbean Conference in 2021 and planned to hold it in the Dominican Republic. Today’s meeting should allow us to clarify these different points.

The financing of these different operations is crucial and will be addressed by our treasurer, Lisiane Kéclard.

Throughout this year we have had to adapt and work by implementing strategies that were not familiar to us before.

It is not the strongest of the species that survives nor the most intelligent that survives. It is the one that is the most adaptable to change ” – Charles Darwin 1809-1882

Let’s be optimistic by having faith in our ability to adapt.

Good luck to all of us as we continue on the road to 2021 by moving forward on our priorities. 

Marie-Dominique HARDY-DESOURCES                      December 11, 2020

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