A four-year pilot project in Mozambique has reduced the epilepsy treatment gap by more than 30% and is now being rolled out to the entire country.
Palmira Fortunato dos Santos, research coordinator at the Mozambique Ministry of Health, presented details of the initiative at the 2019 African Epilepsy Congress in Entebbe, Uganda.
Mozambique is a low-income country of about 30 million people in southern Africa. Based on an estimated prevalence of 1.6%, more than 450,000 people in Mozambique live with epilepsy, though the prevalence is thought to be higher in rural areas.
Of the 1,377 health facilities in Mozambique, only 154 offer mental health care and treatment (under which epilepsy care would fall). There are fewer than 400 mental health professionals for 26 million people. Primary-care facilities—except for those in Maputo, the capital—are not able to diagnose and treat epilepsy. Yet epilepsy is the main cause of mental health consultations; for example, in 2014, epilepsy appointments represented 48% of all mental health consultations nationwide.
To improve access to appropriate epilepsy care, the country undertook the Fight Against Epilepsy Initiative, a four-year project that aimed to train health professionals and community workers in epilepsy diagnosis and management, raise epilepsy awareness among the public, and reduce stigma.
Working with traditional healers
Mozambique also is one of many countries in which epilepsy is seen as having supernatural causes, such as demonic possession or witchcraft. Families tend to turn first to traditional healers, and seek medical care only when seizures worsen. To align the peoples’ beliefs about epilepsy and how the disease should be treated, the Epilepsy Initiative involved traditional healers, as well as religious leaders from Christian, Hindu and Muslim faiths.
Initiative leaders met with the Association of Traditional Healers of Mozambique several times. Rather than lecture the healers about epilepsy, they asked the healers about how seizures affected their communities. Healers told stories of people being injured or dying from falls, burns and traffic accidents; drowning; falling down wells. The initiative leaders and healers agreed that epilepsy keeps people from working, getting married, living regular lives.
Then, rather than denying the involvement of spirits or witchcraft, the medical professionals explained how seizures occur in the brain, and how medicine can stop them. Ultimately, the groups agreed to work together, with traditional healers managing the spiritual aspects of the person’s health and medical personnel managing the physical aspects.
“Traditional healers have an important role in the health of a community,” said dos Santos. “They were willing to work with us and did not feel they were losing patients to hospitals or primary care facilities.” The traditional healers are highly respected members of a community, and are usually much more accessible than medical personnel: Mozambique has more than 75,000 healers, but only about 1,500 physicians. Ignoring the crucial role of healers in day-to-day life would make it much more difficult to engage with communities and people with epilepsy.
Success through community involvement
To train people in identifying and treating epilepsy, the initiative translated the WHO Mental Health Gap (mhGAP) Action Programme for epilepsy and adapted it for use in five provinces: Gaza, Nampula, Niassa, Sofala, and Zambézia (see map). Over four years, 177 health professionals and 1,161 community health workers received training.
Similar projects have been run in Ghana, Myanmar and Vietnam. Each utilized a community-based model to improve diagnosis and treatment. Health care professionals, community health care workers and the public were educated or trained, and treatment gaps shrank.
The Mozambique version of the mhGAP training program for epilepsy involved 12 hours of training given over a two-day period. Training emphasized key messages, including the fact that epilepsy is not contagious. “Catching” epilepsy from someone with the disease is a common misconception in many societies, and this myth often deepens the isolation a person with epilepsy may experience.
The Mozambique initiative reached hundreds of thousands of people through information, education and communication campaigns, including a website and Facebook discussion group. Initiative leaders held 41 meetings with traditional healers, and more than 5,000 “sensitization sessions” in various communities, to discuss epilepsy, reduce the stigma surrounding the condition and make people aware of primary health care services available for affordable treatment. The sessions reached more than 675,000 people, or more than 1 in 3 residents of the provinces.
People attended these sessions willingly, said dos Santos, because community gatherings are a cultural norm. And because information was communicated by leaders of each community, rather than “outsiders,” people were willing to listen and digest the information.
The initiative also involved schoolteachers. “It’s common here for schoolchildren to bring information home to families,” said dos Santos. A school-based contest encouraged students to create posters about epilepsy. Many chose stigma as a theme. The winners were given awards by the Minister of Health and attended a special dinner in Maputo.
Improving access to medication
Increasing access to anti-epileptic drugs was a crucial part of the project, and not an easy task, said dos Santos. Mozambique provides its citizens with free medications for chronic conditions, so cost was not a barrier. Access to medications was another matter.
Ordering and transporting the medications could be unwieldy and slow. Some medication expired in warehouses before it was transported to health care facilities. To avoid shortages, the increase in diagnosis required recalculating the formulas used by the Ministry of Health to order future supplies. Pharmacies refused to fill some prescriptions because primary-care physicians were initially not permitted to write prescriptions for AEDs.
Treatment gap shrinks dramatically
The project’s efforts led to a dramatic increase in annual epilepsy consultations in the provinces: from 4,595 in 2013 to 31,589 in 2017. Between 2015 and 2017, the estimated treatment gap dropped from about 88% to 58%.
“It’s a revolution in Mozambique,” said dos Santos. “The health system is now absorbing the people with epilepsy and it’s integrated.”
Dos Santos then led the writing of Mozambique’s Epilepsy Action Plan, which extended the program to the rest of the country. The success of the pilot project paved the way for the plan’s approval, and lessons learned during the pilot project are being applied to the rollout, said dos Santos. “The message is, don’t make the same mistake twice,” she said.
The “train the trainers” phase has recently finished; there are now people in every province set to train other health professionals and community health workers in how to diagnose and treat epilepsy, or refer more complex cases to a hospital.
The initiative also is enlisting people who have been helped by diagnosis and medication to tell their stories. “It’s a very powerful way to show community members that this can work,” said dos Santos. “To have someone say, ‘You know me – you know that before, I couldn’t work, I couldn’t leave my home, and now look at me.’”
In one case, a young man with epilepsy lost the ability to speak and stopped attending school. He received multiple burns from having seizures near fires, including a severe burn that has affected the use of one arm. After several months of treatment, he’s now seizure free and slowly returning to a semblance of a normal life. One of the best things for his mother, said dos Santos, was to hear him call her “Mom” again.
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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 120 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.
To learn more, visit our website or find us on Facebook.
Our website is available in multiple languages, and we’re on Twitter in English, French, Japanese, Portuguese and Spanish.
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