The results of a training workshop in Sub-Saharan Africa organized by Wayne State University School of Medicine physician and researcher Harry Chugani, M.D., have been published in the Journal of Child Neurology.
Dr. Chugani, the Rosalie and Bruce Rosen professor of neurology and chief of pediatric neurology for the School of Medicine and Children's Hospital of Michigan, organized "Epilepsy in Children in Developing Countries," which was held Feb. 1-4, 2012, in Entebbe, Uganda.
The aim of the meeting was to develop an active lobbying body to identify strategic goals in the management of children with epilepsy in Africa. Doctors from 19 countries in Africa and five countries outside Africa attended. Speakers taught basic diagnosis and treatment of epilepsy in children. Dr. Chugani gave opening and concluding remarks, and lectured on the role of neuroimaging in epilepsy.
"People were very enthusiastic, and they've kept in touch and asked us questions," he said. "They didn't just learn from us and we didn't just learn from them. They learned from each other."
A follow up, "Children with Epilepsy in Africa: Recommendations from the International Child Neurology Association/African Child Neurology Association workshop," is an open-access article included in the journal's April 2013 issue. In it, Dr. Chugani and co-author Jo Wilmshurst of the University of Cape Town, South Africa, outline the need for epilepsy specialists trained to advocate for better care of the continent's children diagnosed with the chronic neurological disorder characterized by recurrent seizures.
The authors write that the viability of international guidelines for the management of children with epilepsy should be reviewed within each African country, and adapted to comply with regional capacity, which can be used to lobby for resources. They recommend more training centers be developed in Africa, in collaboration with visiting specialists, so future advocates can educate themselves within the country in skills relevant to the needs of the continent, Dr. Chugani said.
Those needs include the ability to navigate and overcome the country's stigma, prejudice and misconceptions about epilepsy. Epilepsy teams, including traditional healers, would enable management of increased numbers of children with epilepsy. These teams should also challenge policy, allowing for reliable access to appropriate anti-epileptic drugs, support and health care equity between the continent's rural and urban settings.
The World Health Organization estimates that as many as 10 million people in Africa have epilepsy. While that amount is not rationally higher than any other part of the world, physicians treating epilepsy in developing African countries face several challenges specific to the continent, including lack of available health resources, medication shortages - especially anticonvulsants - as well as the social stigma attached to the disease, which is incorrectly viewed as a mental illness of which to be ashamed, Dr. Chugani said. Close to 90 percent of Africans with epilepsy receive no treatment at all, he added. Epilepsy responds to treatment about 70 percent of the time, yet 75 percent of affected people in developing countries do not get the treatment they need, according to the WHO.
"The treatment gap in Africa is very high. It is an immense problem," he said. "Most Sub-Saharan Africa countries don't even have a single pediatric neurologist. In fact a lot of the care is provided by nurses, and some pediatricians who have some knowledge, but not a lot."
Dr. Chugani is president of the International Child Neurology Association. The ICNA is a voluntary organization with free membership. He organized the workshop as his presidential project.
"I wanted to target Africa because that's where I saw the most need," he said, adding that epilepsy, his research topic of interest, is one of the country's largest health problems.
The group recommended at least one child neurology specialist per 100,000 people. Internet resources could be used as a central forum to present unusual patients, especially for second opinions and expert advice. The group recognized the need to strategize the random system of "advice seeking" to ensure good clinical practice is maintained and optimal care is offered. Telemedicine could also be utilized for review of electroencephalogram and magnetic resonance imaging scans when an on-site specialist isn't available locally.
"If we get funding for it, we could do it (here)," he added.
Dr. Chugani is senior author on the journal paper, with contributions from researchers in Kenya, South Africa, England, Nigeria, Malawi and at the U.S. National Institute of Neurological Disorders and Stroke.
A grant awarded to Dr. Chugani and the School of Medicine from the NINDS (NIH 3 R13 NS077658) provided the majority of the funding for the 2012 meeting, with contributions from the World Federation of Neurology, the Japanese Child Neurology Society, the Child Neurology Society, Children's Hospital of Michigan and the Segawa Foundation.
Follow up meetings are planned, as are other educational workshops like it for a variety of regions across the world, organized by the ICNA, including past and upcoming lectures in Sri Lanka, Myanmar, Mongolia, Kaunas (in the Baltic region), India and China.
"We go to these countries, talk to them, educate them, and teach them to advocate to legislatures for their patients," he said. "We teach them how to lobby and how to set up patient support groups. We see patients in the wards with them."
The ICNA recently launched its own electronic journal and offers a variety of open-access lectures, includes those from the epilepsy meeting in Uganda, at www.ICNApedia.org.
"We are totally nonprofit and totally voluntary. We really want to get to the African countries and the developing nations," he said.
Donations are needed to cover travel expenses for workshop participants living in Africa and traveling within the continent, which Dr. Chugani said is cost-prohibitive for most, including physicians. Those interested may donate to the Positron Emission Tomography Research and Development Fund, Wayne State University School of Medicine Development and Alumni Affairs, 540 E. Canfield, Detroit, MI 48201. Donations will not be used to cover Dr. Chugani's travel expenses. Please indicate the fund name in the memo line.