The Epidemiology in Ghana
Sickle Cell Disease (SCD) is the most common serious genetic disease in Africa. Ghana and other countries in West and Central Africa have the highest prevalence of SCD and related disorders in the world. The common forms of SCD in Ghana are haemoglobin SS, haemoglobin SC, and Sickle Bo and B+ thalassaemia. There are very few families in Ghana who are not touched by this disease.
Statistics from the Newborns Screening for Sickle Cell Disease Project in Kumasi the second biggest city in Ghana and its environs indicate that approximately 2% of newborns have sickle cell disease (SS and SC) . This translates to about 16, 000 annual births of children with SCD in Ghana. Sickle cell SS and sickle cell disease SC constitute over 90% of the disease in Ghana. This is because Ghana has 20 - 25% of its population in the South of the country having sickle cell trait with around 10% having Hb C trait in the northern part, the C trait is more prevalent (20 - 25%) and the sickle cell trait less prevalent (10%), (Konotey Ahulu, 1991). The statistics makes SCD a very important public health related disease in Ghana. Its presence raises several clinical, health educational, social and psychological concerns and creates the need to develop programs to provide holistic care for affected populations.
The Public Health Burden in Ghana
Comparing the situation in the advanced countries to Ghana, it could be seen that generally, trends in health care for sickle cell disease in Ghana trails behind that of the developed world. There are delayed diagnosis and inadequate laboratory services, limited access to specialized care, unorganized education and counseling sessions among others.
For the majority of Ghanaians, diagnosing SCD is often delayed and occurs after several visits to the hospital or clinic with acute illness. Children who live in urban and peri - urban communities get access to better diagnostic services and early diagnosis through neonatal screening which is limited in rural areas. Regular laboratory facilities to inform quality clinical care are also limited at the districts and sub districts levels.
Though education and counseling services play a critical role in any comprehensive sickle cell program organized education and counseling activities were carried out to support the Newborn Screening Program only in Kumasi. In the other parts of the country, limited program may be organized on ad hoc basis in churches especially. Annual campaign are also held on 10th of May to celebrate the Africa Day of Sickle Cell Disease which was initiated by the Association of Africa Groups of Sickle Cell Disease known as FALDA. These are one off events with limited and short lived impacts on genetic counseling. Ghana is yet to institute a national genetic counseling and testing services. However some churches encourage pre-marital testing but such tests have histories of misinterpretations of results.
The Public Health Strategy of Ghana
The success of the Newborn Screening Program in Ghana led by Prof Kwaku Ohene-Frempong, Director of the Comprehensive Sickle Cell Center of the Children's Hospital of Philadelphia USA has demonstrated quite clearly that newborn screening and comprehensive care is entirely feasible in Ghana. Consequently, the Ministry of Health (MOH) and Ghana Health Service (GHS) initiated steps to establish a national Sickle Cell Program. The aim of the program is to prevent SCD, promote the health and well being of SCD patients, prevent suffering and disability and prolong the lives of people with sickle cell condition.
In the year 2005, the then Director General of Ghana Health Service, issued a directive to all Regional Hospitals to establish Sickle Cell Clinics. This was not done due to a number of reasons. The Sickle Cell Association of Ghana took up the task to establish two clinics in two of the regions in Ghana in the year 2005 and 2006 respectively.
The discussions to establish national sickle cell program began earnestly in 2006 with the selection of a national taskforce to develop policy guidelines for the management of sickle cell in Ghana. The guidelines were completed in 2007 and was adopted as a policy for dissemination and use .
In 2007, basic information on SCD was included in the National Child Health Growth Monitoring Plan for parents to be aware of the SCD and the need for testing.
In March 2008, the National Sickle Cell Program Proposal was developed and a focal person selected to oversee to the implementation of the roll out of sickle interventions from the Newborn Screening Program in Kumasi to cover the entire country. The Sickle Cell Foundation of Ghana which took over the administration of the Newborn Screening Program has been given the mandate by the Ministry of Health to see to the implementation of the roll out .
However in a country like Ghana which lies within the sub-Saharan Africa where 250,000 babies with severe forms of sickle cell disease are born each year, the Ministry sees prevention as one hope of reducing the scale of this burden so that the limited resources can be used for more effective treatment of children found to have SCD from the Newborn Screening program.
It is in the light of this that the Ministry of Health has now signed a Memo of Understanding (MOU) with Sickle Cell Condition Advocates (SICCA) giving SICCA the mandate to do advocacy work on SCD with emphasis on pre-conception screening in the three northern regions in Ghana. SICCA is also to see to the establishment of Sickle Cell Clinics in all the three Regional Hospitals in the northern part of the country. This project will also be done for other parts of the country if funds are available.
The present Minister of Health during the official opening of the 1st International Congress on Sickle Cell Disease in Accra, Ghana in July 2010, made his commitment known by his Ministry sponsoring the Congress . Like the Secretary General of the United Nations, he called on the international community to help in raising awareness of SCD at national and international levels. He stated that the international community's collaboration and the support of variety of stakeholders in the drive to find lasting or a meaningful solution to the problem of SCD is very necessary.
The Likelihood of and Access to Quality Care
In the recent past there used to be only two organized programmes for the management of SCD in Ghana located in the two teaching hospitals; ie Korle -Bu and Komfo Anokye Teaching Hospitals. The Korle-Bu Sickle Cell Centre currently known as the Ghana Institute of Clinical Genetics was established in the late 1960s through the initiative of Dr F.I.D Konotey-Ahulu. Until 1992, the facility in Accra was the only one established to cater for the health care needs of SCD patients in Ghana. In 1992, when a similar program was initiated in Kumasi and the Kumasi Sickle Cell Clinic was established as a prerequisite to a collaborative project to screen babies at birth for SCD, it became necessary to enroll them in a comprehensive clinical and health educational program.
There is not as much comprehensive national program on sickle cell as there is for malaria, HIV Aids and some other diseases. The recent introduction of the National Health Insurance Scheme, though a laudable initiative, makes no dispensation for patients with sickle cell disease particularly those who are unemployed and for that matter cannot afford to pay the minimum contribution or premium.
Barriers to quality health care services in Ghana include:
Lack of SCD Clinics in all the Regional Hospitals to provide specialist care for sickle cell patients
District Hospitals not in a position to provide basic care for SCD patients.
Lack of capacity building of Health Care Workers eg . doctors, nurses, laboratory technologists, genetic counselors and health educators to effectively manage SCD patients.
Need for development of treatment protocols, guidelines and training modules for holistic management of the disease.
Lack of laboratory services to provide highly sensitive and specific diagnostic facilities at all regional hospitals and a basic package for district hospitals to facilitate prompt diagnosis and quality management.
Need for public education through variety of channels. Again, genetic counseling and testing centers could be established so that people may walk in to receive counseling and testing.
The need for Ministry of Health and the Ghana Health Service to encourage and support the establishment of more patients support groups across the country.
Due to lack of understanding of SCD and considering the fact that some patients resort to traditional medicine for various reasons, the Ghana government has come out with a policy to integrate traditional medicine into the mainstream health delivery system. To achieve this objective several key structures have been put in place to drive this agenda. For instance a centre for scientific research into plant medicine among others have been established to provide technical support in evaluating the safety and efficacy of herbal product. The Food and Drugs Board has also been mandated to assist in regulating the quality and safety of traditional medicine products on the Ghanaian market. More recently the Traditional Medicine Practice Council has been established with the principal duty of regulating the practice component of traditional medicine in Ghana.
The role of social support groups in mitigating the social, psychosocial and emotional stress experienced by patients and families is well documented. Currently in Ghana, the Sickle Cell Association of Ghana is the major support group. In addition, there are some NGOs that provide forms of social support. These include, the Sickle Cell Foundation of Ghana and the Sickle Cell Conditions Advocates, Sickle Aid Ghana and XYZ Sickle Cell Foundation.
THE LFSCA TEAM - GHANA (OCTOBER 2010)Ms. Rebecca Asamoah - Secretary to LFSCA-London (Team Leader)
Rev. Gideon Buernor Puplampu - Presbyterian Church of Ghana
Chairman for Parliamentary Committee on Health
Dr. Billy Bosu -Program Manager, Non-communicable Disease Control Unit, Ghana
Dr. Paul Mensah - Dept. of Haematology- Korle-BuTeaching Hospital Accra-Ghana
Dr. T. K. Caiquo - Caiquo Hospital, Tema - Ghana
The Director General - Ghana Broadcasting Co-operation
Ms. Gifty Anti - Ghana Broadcasting Co-operation
Ms. Gloria - Ghana High Commission, London-UK
Captain Mrs. Catherine Haizel,
By Charlotte Owusu
Director/Trustee, LFSCA & Founder/President - Sickle Cell Condition Advocates, Ghana