Society for Health Education (SHE) was established in 1988 that is pro active in identifying and addressing crucial health and social concerns of the Maldives. The Organization aims to foster family well-being in general and in particular empower families and women to make informed choices when seeking services from medical professionals. It advocates individuals to exercise their right to be informed of the nature of diagnosis and consequent treatment.

Awareness raising activities of the organization comprise a wide rang of activities including publication and dissemination of print materials, development of radio programmes and organization of public forums. In the absence of health facilities in the majority of island communities, the programme became popular among disadvantaged and remotely located island communities. These interactions contributed to the launching of parallel programmes on family planning, nutritional education, psychosocial counseling and thalassaemia prevention.

 

 

SHE continued its exploration in building and providing quality life of Maldives families. Effective among the various health promotion initiatives implemented by this Organization were to reduce the number of Thalassaemics born in Maldives.

 

And also increase the public awareness on the implication and consequences of crucial social and health concerns including thalassaemia, large family size, high divorce rate, smoking habits, spread of drug abuse, high proportion of adolescent and youth.

 

The Organization aims to foster family well-being in general and in particular empower families and women to make informed choices when seeking services from medical professionals. It advocates individuals to exercise their right to be informed of the nature of diagnosis and consequent treatment. Awareness raising activities of the Organization comprise a wide range of activities including publication and dissemination of print materials, development of radio programmes and organization of public forums. In the absence of health facilities in the majority of island communities the programme became popular among disadvantaged and remotely located island communities. These interactions contributed to the launching of parallel programmes on family planning, nutritional education, psychosocial counseling and thalassaemia prevention.

 

Studies under taken by the Society during the initial phase of the programme confirmed a carrier-prevalence of 18.1 % for this genetic blood disorder. The established prevalence level contributes to the birth of a thalassaemia major for every 120 births. Consequently even during the early 1990's around 70 thalassaemia majors would have been born in the Maldives which comprise 200 inhabited small islands dispersed over a surface area of 90,000sq kilometers. The total land area of the 1198 island located in the Maldives archipelago does not exceed one-percent of the country's surface. Most of the Thalassaemia Majors who were born to Maldivian families would have passed away even without been diagnosed. 

Even though the prevalence of thalassaemia was known to the Maldives health. Professionals during the early 1970's, the significance of this problem continued to remain in obscurity until the early 1990s. Since thalassaemia majors require monthly blood transfusions and costly treatment (0 survive; only few even would have lived beyond their fifth birthday. Though few well-off families having a thalassaemia major managed to extend the life span of their children to the adolescent age by seeking relevant care, many families become protective and shy away from acknowledging the presence of a child affected by this genetic disorder.

 

 

Society for Health Education has managed to change the pathetic scenario depicted above. Now thalassaemia is a household word across the Maldives. Families with thalassaemia majors have the confidence to approach blood donors and service providers for the purpose of helping their affected children to survive longer. Since the costly bone marrow translation (BMT) is the only cure currently available, they are compelled to depend on monthly blood transfusion and a daily doze of Deferral to survive. 

The dramatic change in the situation is the outcome of a dynamic prevention programme undertaken by SHE, which comprises an awareness component along with provision for screening. The screening is designed to extend screening service to each island community once in five years, there by enabling every couple to have access to this service before marriage. In addition the Society also supports the treatment of thalassaemics (outputs presented in attachment). Each individual, then, has the benefit of taking an informed decision with regard to the choice of their partner or planning to conceive a child. This decision is crucial for carrier-couples because of the prevailing 25 percent chance of getting a thalassaemia major for every pregnancy. The service is provided free in order to attract young couples and adults seeking a new partner. The Society has fully undertaken the burden of the excessive cost (US $ 15 per test) of the screening programme until Government decided to provide one third of the cost in 2003. Annual target of the programme is to screen 10000 individuals from around 40 island communities. 

 

The strategy adopted for the thalassaemia screening programme is extremely challenging considering the wide dispersion of the island communities and the difficulties in traveling in the hazardous waters of Maldives. The requirement to transfer blood samples to the laboratory located in the capital within 24 hours presents complex operational challenges in the absence ofa public transportation set-up. Traveling by sea during the night is risky due to the treacherous reefs that depict the unique atoll characteristics of Maldives. In addition, traveling costs are relatively excessive and exceeds by six folds compared to land-based travel. Despite these challenges, the Society managed to extend thalassaemia screening services to all of the 200 island communities by 2002. The second round of the screening programme is expected to be completed soon. Success of this strategy would enable each couple to access this service and identify their carrier status before marriage or before planning to have an additional child. This service is being strongly supported by the Government of Maldives which considers it as the main component of the national thalasaemia prevention programme. Further, it allows the Government to focus on the treatment and curative aspects of thalassaemia majors.

 

 

The data compiled under the screening programme provided valuable information on the haemoglobinopathes of the Maldivian population and thalassaemia prevalence pattern across the countries. While some islands remain completely unaffected by the disorder others record a prevalence that affects more than a third of the population. In addition to the dominant type Beta thalassemia the population is also affected by Alpha thalassaemia and Hemoglobin E and S varieties. Population of some islands is also affected by sickle cell. The screening programme was significantly affected by the presence of Alpha thalassaemia which cannot by diagnosed from blood samples that have remained in containers for more than two hours. Since sensitive and expensive diagnostic machines cannot be taken out side the laboratory the programme experienced a significant wastage of blood samples till the introduction of DNA analysis in 2005. This expansion in services enabled the organization to reduce the number of inconclusive results and reduce wastage from 12 percent to less than one percent. 

In addition to the prevention programme, SHE supports families with a thalassaemia major in facilitating treatment by donating infusion pumps and Deferral injections and organizing transport for children traveling to service centers for the monthly blood transfusion. In 2006, SHE managed to launch a BMT programme in collaboration with Rome base Mediterranean Institute of Hematology (IME). Under this programme IME will conduct BMT at its medical facilities. SHE supports the programme by providing blood samples for identifying bone marrow donors through HLA typing. Each month blood samples of 10 children are forwarded to IME for necessary diagnoses. Bone marrow donation for the treatment is possible from a sibling of the affected. Since the thalassaemia major and all siblings will have to travel to IME in Rome or any other foreign country providing the treatment support for the transportation of blood samples by itself becomes a significant contribution to families having a thalassaemia a major. Currently there are nearly 500 thalassaemia majors in Maldives, out of a total population 300,000 people. All expenses concerning the transfer of blood samples and related diagnoses are borne by the program. 

The cost of BMT is jointly shared by IME and SHE. Under the partnership by IME and SHE, the former will bear all costs related to family's stay in Italy for six months and the operational cost which alone exceed US $ 110,000, for the first ten children receiving the treatment. The parents and the bone marrow donor need to accompany each child receiving the treatment. And SHE is required to fund travel costs for this group and mobilize resources to support all costs related to the BMT operation of the next batch of 10 children. Despite the excessive costs of this service, SHE is committed to continue this programme as long as possible because of the strong humanitarian dimension of the programme which literally gives a new life to a child who had in the past dreamt of a normal life without having to receive monthly blood transfusion and daily use of an cumbersome infusion pump. Only 26 children in Maldives have received BMT treatment as of mid 2008. Under the IME-SHE joint programme the first child received bone marrow transplantation on 220d August 2006 and 10 children have had BMT under this programme. The Society is firmly committed to continuing its efforts to alleviate the sufferings of thalassaemic children and their families.

 

 

The organization was supported by the United Nations Population Fund (UNFPA) and the International Planned Parenthood Federation (IPPF). Also the Organization was supported by Islamic Development Bank and the embassies of Japan, Canada and New Zealand. 

The after effect of this initiatives by the SHE organization, the progress in health terms include a reduction in the infant mortality rate from 62 in 1992 to 14 in 2003 and 95% coverage in child immunization. 

For all these achievements in health education and the initiatives, SHE deserves the Hamdan Award for Volunteers in Humanitarian Medical Services, for the term 2007-2008 .