Since it was registered as a non-governmental organisation (NGO) about 12 years ago, the Sickle Cell Condition Advocates (SICCA) has focused on its aim of educating, counselling, raising awareness of the Sickle Cell Disease (SCD), while campaigning for better care for those living with the disease and their families.
In September 2010, after organising a number of programmes, the association reached a key milestone with the signing of a Memorandum of Understanding (MOU) with the Ministry of Health for SICCA to implement a three-month sickle cell advocacy project in the country beginning from the northern parts of the country.
The project was completed successfully within the stipulated period and a very good report submitted to the ministry, to our credit.
As the founder of the SICCA, I started looking for solutions to have a country whose citizens had knowledge on sickle cell in order to be in a position to manage it, since the most important aspect of all our programmes was to advocate for the prevention of the disease through pre-conception screening so as to have people with the condition, live a fruitful life as we make serious efforts to see to its prevention.
The struggle to achieve this goal intensified when I lost my first child with sickle cell at the age of 17 in 1995. This encouraged me to team up with some parents with children with sickle cell to form the Sickle Cell Parents and Patients Association in Tema.
Then later, the Tema group joined the other sickle cell groups in Accra and Kumasi to form the Sickle Cell Association of Ghana (SCAG) after which I was appointed the National Organising Secretary of the association.
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On World Sickle Cell Awareness Day on June 19, 2017, SICCA, in conjunction with the Ghana Academy of Arts and Sciences, launched the first Sickle Cell Pre-Conception Screening Project with the theme: “Sickle Cell is Preventable; Know your Sickle Cell Status” at the premises of Ghana Academy of Arts and Sciences.
This was in response to the call by the United Nations to increase individual and community awareness of the SCD and strengthen primary prevention to reduce the incidence of SCD.
It also emphasises the urgency for member states to design, implement and reinforce in a systematic, equitable and effective manner, a comprehensive national, integrated programme for the prevention and management of SCD.
Seeing the need for a national campaign on the prevention of SCD, SICCA in partnership with I-Texon Ghana, another NGO, goes round the country every first quarter of the year to reach out to students in senior high schools with the hope that the early exposure of Ghanaian youth to education on SCD will go a long way in promoting the public’s understanding about genetic testing and counselling to make informed decisions on their choice of partners, marriage and SCD care in Ghana.
The main aim of the project is to educate students in the SHSs, so that after school, they could go out to be advocates for pre-conception screening.
A pilot project began in the Greater Accra Region with the screening of some students in the Department of Biochemistry Cell and Molecular Biology of the University of Ghana School and the Chemu SHS in Tema, as part of last year’s (2018) celebration of the World Sickle Cell Awareness Day.
Our study has revealed that about 30 per cent of students screened, do not go for their report. Fortunately, a new strategy has been adopted with the use of the HemoTypeSC strip, a rapid test kit for the determination of hemoglobin type, that shows the result of the screening within five to 10 minutes after screening.
We are looking up to a future where with the government’s support and initiatives, the service of pre-conception screening, will be widely available to all Ghanaians.
The association believes that counselling and testing for SCD should be part of an overall policy on SCD, in addition to the provision of resources to facilitate the translation of policy to practice.
Genetic testing and counselling have shown to be a recent concept introduced in some churches for the benefit of their members before marriage.
With a minimal history of testing being carried out by a few churches, the provisions of the policy could build on the existing structures and practices and on our new concept towards a more organised, standardised national programme accessible to all who desire to use it.
Mandatory or voluntary?
As this service becomes increasingly available nationally, the question arises as to whether testing should be mandatory or voluntary.
This is an issue for discussion.
We are sure that after the first phase of this pilot project, it will be certain that enough awareness will be created for Ghanaians to wake up to this call.
Ghana’s Education Sector presents a critical opportunity for reaching a formidable group of young people with basic information on SCD.
Experience from other countries have clearly shown that genetic counselling, coupled with pre-conception screening, can lead to a large-scale reduction in births of children affected by the condition.
Introduction of SCD education on counselling and screening in schools will create the needed awareness of the disease and also drastically reduce such incidences of the disease.
It is quite clear that we in developing countries can only fight SCD using preventive method so that, the limited resources could be used for the few who will be born with SCD.
As we establish a credible and dependable alliance with all stakeholders, a more effective coordination is needed to establish the most effective advocacy forces.
The emergent force would be better equipped to partner decision makers such as the government and civil society organisations among others to see to the implementation of our agenda.
Together with Professor Ohene Frimpong formerly of the Philadephia Children’s Hospital in the USA and a friend of his, we registered the Sickle Cell Foundation of Ghana (SCFG), and l was appointed the first Administrative Director of the foundation in Kumasi.
I had to leave SCFG to establish SICCA to see to the prevention of this deadly disease in 2007.
We are most grateful to the Graphic Communications Group Limited for the constant opportunity given us to reach out to the people with our message through the publication of our activities.
My humble appeal is that we all do our best to support this project as we partner SICCA to strive for a better Ghana agenda.
May the Good Lord help and bless Ghana .
The writer is the Founder of Sickle Cell Condition Advocates.