Epilepsy Support Association Uganda
Project: Provision of accessible and affordable medication: bringing epilepsy out of the shadows
To provide regular, accessible and affordable medication to people with epilepsy by strengthening the associations Community Drug Bank Project. This project is an adaptation of the Chilean idea to supply cheap and accessible drugs to people with epilepsy in their communities on a non-profit basis. This idea was initiated in 2001 but was limited by inadequate funding.
Through the funds provided by IBE the association will provide drugs provision service for people with epilepsy by contracting NGO health units. Health workers in these units will carry out outreaches in the community and will provide progress reports on the operation of the drug bank. Some people have been travelling 25km to access the drugs from public health centers; through the drug bank initiative medication will be available much closer thereby reducing distances and transport costs. The money previously used for transport will help sustain the drug bank initiative.
Uganda is still a developing country with an estimated population of 27 million people. More than half of the population is below 18 years. About 90% of the population still live in rural areas and are dependant on subsistence agriculture. Uganda still relies on its international development partners to finance more than 50% of its annual budget. According to the 2005 Poverty Eradication Action Plan (PEAP), poverty is still the number one development problem for Uganda. Uganda is still ranked among the 49 least developed countries in the world (UNDP, 2000).
In Uganda no definitive studies have been undertaken to establish the prevalence of epilepsy. This has led to limited information among health planners and policy makers to plan for and include people with epilepsy in policy frameworks such as Health, Education and Employment. Lack of information has further led to negative attitudes of health workers towards people with epilepsy, irregular supply of AEDs, teachers have chased children with epilepsy out of schools and their fellow students have shunned them, thus resulting into limited vocational skills for people with epilepsy leading to unemployment and underemployment. Epilepsy has been perceived as a superstition, a curse and contagious. As a result people with epilepsy have been isolated, discriminated against, neglected, stigmatized and their fundamental human rights have been violated.
Epilepsy affects men and women differently, but impacts more on females than males due to social and cultural roles. Discriminatory cultural practices on property inheritance and property ownership affect the livelihoods of women more than men with epilepsy.
The government has put in place Affirmative Action to benefit people with epilepsy particularly women and girls. Further steps taken by the government include a land policy, laws on marriage and divorce, inheritance, domestic violence and other forms of violence against women and girls. In spite of the above, lack of public awareness, negative community attitudes, cultural beliefs and lack of programmes on specific concerns of women with epilepsy are still challenges.
The Ministry of Health has decentralized health units according to the local government structures in place. This poses a problem of distance for people with epilepsy to access medication and treatment leading to stress and increases the incidences of seizures.
Addressing the problems
This project will provide regular, affordable and accessible drugs to people with epilepsy and build networks and alliances with the health service providers. Regular medication will bring about stability in people with epilepsy allowing them participate in all community initiatives, thus reducing stigma.
Regular drugs will increase the number attending clinics and will help to capture data and statistics on the number of people with epilepsy in particular health units. In turn this will help health units plan for people with epilepsy as well help them to advocate and lobby for their rights in their respective districts for better service delivery.
Furthermore adequate and regular supply of drugs reduces on the number of seizures. With the reduction in the number of seizures, people with epilepsy will develop self esteem and self confidence to fully participate in all community initiatives. This will enable children with severe attacks to attend school regularly. This in the end will provide an opportunity for people with epilepsy to continue in education and acquire skills which they will use to find employment. The abilities shown by people with epilepsy will in the long run reduce stigma attached to epilepsy.