Sickle cell preconception screening - The way forward in Ghana
In December 2008, the General Assembly of the United Nations [UN] adopted a resolution, calling for the recognition of Sickle Cell Disease (SCD) as a public health problem and one of the world’s most common genetic disease.
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It also declared June 19 as World Sickle Cell Day. It called on all member states and the [UN]system to raise awareness of SCD at national and international level on this day.
The Sickle Cell Condition Advocates (SICCA), a non-governmental organisation,[NGO] in partnership with the Ghana Academy of Arts and Sciences, launched the first Sickle Cell Preconception Screening Project in Ghana to create awareness of the sickle cell disease in response to this call.
The project, which had the theme: “Sickle Cell is Preventable; Know your Sickle Cell Status”, sought to increase public awareness of the condition through counselling and encourage preconception screening among the youth to enable them to make informed decisions.
Project
The project would among other things, identify, support and liaise with social activists and other organisations with similar objectives, solicit for funds to assist people with sickle cell, assist in the establishment of special clinics and also organise workshops for both health professionals and the public for further enlightenment.
The Deputy Minister of Health, Madam Tina Gifty Naa Ayeley Mensah, at the launch in Accra, said the high burden of SCD in Africa, including Ghana, led to intensified campaigns and declarations over the last decade.
She commended SICCA for the initiative and partnership with all stakeholders to address the issue of prevention after undertaking a successful pilot project to ascertain the country’s status of SCD, using the three northern regions as a test case and focusing especially on the youth.
According to her, Ghana and other countries in West and Central Africa had been identified to have the highest prevalence rate of SCD and related disorders, with about 20 to 30 per cent of the people in these areas being carriers.
A pilot screening programme for SCD in Ghana, she said, confirmed that approximately two per cent, translating to 16,000 babies, were born with the condition each year, which called for a holistic attempt to provide clinical, health, educational, social and psychological care for the affected as well as unaffected populations.
Information
Madam Mensah said the physical, emotional and financial stress that people with the SCD and their families go through, the high prevalence rate, coupled with the lack of knowledge of the management and care of those affected by the condition, and the inadequate facilities made it urgent to take steps geared towards reducing the incidence to the barest minimum.
She said SCD had also been identified as a threat to the economic and social development of countries where the condition was endemic and the need to find ways for its prevention and treatment was overdue.
Also present at the launch was the Deputy Minister of Education who said that Madam Barbara Asher Ayisi educating the youth in our schools on SCD was as important as providing them with various skills to enable them to lead productive lives.
She emphasised that SCD was painful and could be life-threatening. For many children who suffer from it, their education is severely affected as they may drop out of school. For those who are able to attend school, the difficulty is that many teachers are not well informed about the condition and are therefore unable to manage the children when they go through crisis in school. Some parents are equally not particularly well equipped to handle their children’s condition.
Awareness
Madam Barbara Asher Ayisi said if we were to make a meaningful impact on the public consciousness with regard to sickle cell anaemia, we must approach the issue from a multidimensional angle.
That involved the health, information and education ministries coming together to coordinate their activities, together with the specialist bodies and agencies.
She assured all stakeholders that the Ministry of Education was open to providing the necessary support to ensure that public awareness of sickle cell anaemia was heightened.
The deputy minister commended the preconception project as a vital tool in fighting sickle cell anaemia.
Control programme
The [ World Health Organisation] [WHO] Country Representative, Dr Owen Kaluwa, however, said despite all the global and regional effort, progress at country levels had been slow, and urged member states to give priority by increasing resource allocation especially for prevention and effective management, provision of adequate infrastructure, equipment, medicines and research.
He said WHO Africa Region at the 60th session of Regional Committee for Africa adopted a Regional Strategy on SCD to systematically guide member states on the required action to be implemented to address this problem.
One of the targets in the regional strategy was for the member states with high SCD prevalence by 2020 to have developed and be implementing a clearly designed national [SCD] control programme within the context of a national health strategic plan.
Dr Kaluwa said WHO would continue to advocate increased resource allocation especially for prevention and effective management of SCD and provision of adequate infrastructure, equipment and medicines and research and would as well provide technical support for strengthening national SCD policies and programmes.
He called on all stakeholders: health professionals, parents, patients, civil society, sickle cell advocates and the media to strengthen the partnership to promote public education which would increase awareness and encourage screening among members of the community. As we promote prevention we will also need to advocate for care and support to affected individuals.
SICCA
Ms Charlotte Owusu, the Founder of SICCA, said the pilot project would begin in the Greater Accra Region, with the screening of final year students in senior high schools who would be advocates of preconception screening for sickle cell when they are out of school.
According to her, Ghana’s educational sector presents a critical opportunity for reaching a formidable group of young people with basic information of SCD, thus introducing counselling and screening into schools would drastically reduce such incidences of the disease.
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