By Tola Dehinde
Recently, I had the pleasure of meeting two people who are the national and international coordinators of African Congress on Sickle Cell Disease. They told me a lot about what they do and I thought to share some of what I was told about the congress that took place last year.
The first African Congress on Sickle Cell Disease (ACSCD) held at the Landmark Centre in Victoria Island from October 31 to November 2, 2019. The overall goal of the congress was to facilitate active exchange of information among scientists, researchers, policymakers and other key stakeholders, to highlight challenges, opportunities and enhance strategies to further sickle cell control.
More than 350 participants from 18 countries met for three days in Lagos, Nigeria, to exchange ideas and good practices, foster collaborations, reflect on ongoing challenges faced and progress made under the theme ‘Overcoming Sickle Cell Disease – Power of the Collective Voice.’
The congress was convened by Dr. SickleCell in collaboration with the Olusegun Obasanjo Foundation with the support of the Federal Ministry of Health and the World Health Organisation.
The congress held under the patronage of ex-President Obasanjo and hosted by Lagos State. The participants included high level officials from ministries of health, WHO, regional organisations, non-governmental organisations, experts from the fields of sickle cell disease and non-communicable diseases as well as representatives from the private sector, government, academia, civil society and the media.
The congress was a platform for exchange and networking built on the understanding that active partnerships and cross-border collaborations are key to discovering and establishing sustainable solutions towards overcoming sickle cell in Africa and that a more concerted effort on all front is crucial in placing sickle cell on the global health agenda. Discussions centered on the challenges posed by sickle cell and the opportunities for actions that can be taken to overcome sickle cell disease at local level with the various sessions featuring presentations from international experts as well as leaders from the African region. Alongside the main conference sessions, a dedicated symposium for women overcoming sickle cell enriched the programme. Participants had the opportunity to hear from women working to overcome sickle cell disease. It was a first of its kind on any stage or platform and a major touch-point among the participants.
Following the congress discussions and deliberations, the views and recommendations from participants at the congress advanced sickle cell control in Africa as participants endorsed it as a much needed platform for the convening of the sickle community in Africa and the world towards a collective goal of overcoming sickle cell disease in the region; expressed faith in attainment of placing sickle cell at the top of the global health agenda and appreciated the immense support of the World Health Organisation in catalysing multi-sectorial collaborations towards achieving adequate sickle cell control. The deliberations also appreciated the World Health Organisation for supporting the first ACSCD aimed at raising regional awareness and strengthening cross-border collaborations for sickle cell control and hoped for continued support for the ACSCD to attain and sustain impact and gains in the years ahead.
The congress was officially declared open by the Chief Medical Director of Dr. SickleCell & ACSCD Co-chair, Dr. David Ajaere on October 31, 2019. All the speakers applauded the congress for its success and stressed that active partnerships and cross-border collaborations were prerequisites for furthering sickle cell control in the region. Politics was also identified as a key foundation necessary to enable policy and programmes implementation for sickle cell control. These leading political and civil rights personalities alongside experts in the field contributed to the inspiring discourse.
The congress proceeded in 14 plenaries, panels and special sessions featuring plenary speakers from vast and varied backgrounds who shared latest researches, statistics and insights with a view to showing how learning and experiences could be applied successfully towards sickle cell control.
Among them, Director, Research at Sickle Cell 101, Dr Stephen Boateng, spoke on the topic ‘A Call to Action on Sickle Cell Trait.’
He identified sickle cell trait as ‘the missing piece to a universal cure for sickle cell disease’, stating that sickle cell trait and sickle cell disease weren’t mutually exclusive.
The National Desk Officer for SCD at the Ministry of Health, Dr. Alayo Sopekan, also delivered a rousing presentation during a panel discussion on ‘Policy and Action for Sickle Cell Control: The African Perspective’. He offered knowledge on how to effectively engage with government to foster better collaborations and sustainable solutions for sickle cell at the local level.
Also, a renowned haematologist at the University of Benin Teaching Hospital, Prof. Bazuaye Nosakhare, highlighted that Africa faced the challenge of low blood supply for transfusion therapy due to shortage of voluntary blood donors.
Speaking on ‘Treatment options for sickle cell disease in Africa: What are we investing in?’, he noted that Nigeria could now perform Automated Total Red Cell Exchange since its first successful case in 2014 and highlighted a noticeable increase in general survival rate of sickle cell disease in the region. He, however, lamented that of the 1.5million stem cell transplantation done in the world in 2017, only 2 per cent was done in Africa, calling on the government and partners to invest in the much needed healthcare infrastructure.
Coordinator, Non Communicable Disease, Primary Prevention Programme at WHO Africa, Prof. Jean-Marie Dangou, emphasised that “scaling up sickle cell disease prevention is essential for achieving universal health coverage” during his keynote address on “Setting Priorities for National, Regional and Global SCD Prevention and Control Programmes.’’.
The National Marrow Donor Programme/Be The Match harnessed the congress as an opportunity to showcase the vision of their organisation, to help people lead ‘‘longer, healthier, happier lives,’’ including activities of the group.
In addition to being early sponsors of the congress, the Chief Executive Officer of NMDP/Be The Match, Dr. Randal Mills gave a special session presentation on the topic ‘‘A Cure for Sickle Cell Disease Exists: A Partnership model to promote Equitable Access to Curative Bone Marrow Transplantation.’’
The 2nd edition of the congress is to hold later in November in Abuja and has as its theme, “Working to Overcome Sickle Cell Disease – What Next?” The ACSCD2020 provides a series of amazing opportunities that would appeal to prospective participants wishing to leverage these opportunities and contribute to the programmes of the congress which include symposium, exhibition, panel session; sponsor and exhibition at the congress.
If you would like to get in contact with me about this column or about sickle cell disease, pleases do so on:t.dehinde@yahoo.com and do check out my blog: www.howtolivewithsicklecell.co.uk