2 Improving epilepsy care in Africa and Asia

2 Improving epilepsy care in Africa and Asia

In 2019, our Corporate Societal Responsibility (CSR) department was merged within our newly created Global Sustainability team. The Global Sustainability team continues to build on projects managed until 2019 by the CSR department to improve access to quality care and medicines for patients with epilepsy in low- and middle-income countries.

In these countries, access to epilepsy care remains a complex public health challenge. Limited or lack of qualified healthcare professionals and disease awareness at different levels of society make people living with epilepsy more vulnerable to poverty and social exclusion.

Our eight ongoing projects in Africa and Asia aim at:

  • Creating inclusive epilepsy education platforms for healthcare providers,
  • Expanding and accelerating community awareness programs about epilepsy as a chronic disease to increase acceptance and social integration of people living with epilepsy in their family, school, social and economic network,
  • Improving access to diagnosis and treatment – within the countries’ treatment guidelines and
  • Creating academic neurology platforms to train the next generation of local researchers and neurologists.

To support our projects financially, the UCB Societal Responsibility Fund was jointly launched by UCB and the King Baudouin Foundation (KBF) in 2014. This partnership allows UCB, our colleagues and stakeholders to financially contribute to our projects through donations to the Fund. Four initiatives are being supported by the Fund to date: Fracarita Belgium Rwanda, Fracarita Belgium Democratic Republic of Congo, DukeMedicine, Global Neurosurgery and Neurology department and Humanity and Inclusion. The One Family Health initiative ended in 2019.

Uganda

In Uganda, the Duke Medicine, Global Neurosurgery and Neurology (DGNN) department of Duke University (Durham, the U.S.) completed their third year of activities, with funding from the UCB Societal Responsibility Fund of the KBF. The overall objective of the DGNN partnership is to build on synergies between our two organizations in improving access to quality epilepsy care in Uganda by sharing knowledge.

The DGNN team provided training to two Ugandan physicians in adult and pediatric neurology and established the very first neurology clinic at the Mbarara University. The offices are built for consultations and EEG investigations and serve 20 to 25 persons living with epilepsy every day. The team also focused on epilepsy training for healthcare providers, community awareness and sensitization initiatives, as well as including traditional and pastoral healers in community health inventions.

The DGNN, in collaboration of the Makerere University School of Public Health, PMA2020, Uganda Bureau of Statistics and Uganda Ministry of Health, completed the first phase of a cross-sectional nationwide epilepsy prevalence study. The data were presented at the African Epilepsy Conference in Entebbe (Uganda).

Rwanda

In Rwanda, several activities in our partnership with Fracarita Belgium have progressed significantly in 2019.

Data were generated providing insights into the burden of neurological diseases in Rwanda. A three-pronged approach encompassing education, research and awareness building is further strengthening neurology and public health capacity:

  • In October, two Rwandan physicians started their third year of neurology training at the Cheikh Anta Diop University in Dakar (Senegal), while one started her second year. A fourth physician started her second year of a Master of Public Health program in Kigali,
  • A study of co-morbidity of epilepsy and depression was conducted by a physician in Ndera as part of a PhD supervised by the department of Neurology, Ghent University (Belgium). In addition, the teams presented Rwandan research data in six posters at the African Epilepsy Conference in Entebbe (Uganda) and
  • The Rwandan Organization Against Epilepsy completed an epilepsy awareness training for more than 1 800 community health workers and traditional healers in villages of the Musanze district.

UCB has also progressed this year with the finalization of an in-country neurology curriculum to be offered jointly by the University of Rwanda and Ghent University. This five-year curriculum will strengthen neurology capacity, foster neurology sub-specializations through targeted sponsorship, provide expert EEG training courses, assist in the creation of disease registries for rare neurological conditions and support clinical research study capacity. The curriculum will be implemented in 2020.

The story of Marie-Josée

Marie-Josée, living with epilepsy (portrait)
Marie-Josée, living with epilepsy

Marie-Josée was born in 1994, in Kitabura, a little village in Rwanda down the road from the Kimonyi health center. The road is diced with volcanic stones strewn across an astounding green-colored landscape.

Marie-Josée’s story is a biography of epilepsy. She was born in 1994 at the crossroads of history as an inhumane genocide had just devasted the nation. She developed her first seizures at the age of 14. She was excluded from school and spent her time gardening vegetables in a small plot. When she had seizures, she stayed home, exhausted and too tired to work.

Early in 2018, she learned about an epilepsy program in Kimonyi and, quite determined, she climbed a long hill to the health center. Of course, her diagnosis was generalized tonic-clonic seizures. She started on anti-epileptic medication and walked every month up the hill. Soon she became seizure-free and she continues to conscientiously take her medication. She also met her future husband and now they are proud parents of a little boy.

Her gratitude is humbling, and the twinkles in her eyes and her glowing smile are a source of fulfilment and energy; energy and courage to accelerate our programs in Rwanda, especially in remote areas where a double disease burden is conferred on vulnerable patients – epilepsy and the scourge of social stigma.

Democratic Republic of Congo

In 2019, we celebrated the ten-year anniversary of our partnership with Fracarita Belgium in the neuropsychiatric center Dr Joseph Guislain in Lubumbashi. It is the oldest of UCB’s initiatives in low- and middle-income countries. It is built around four objectives:

  • To better understand the epilepsy disease burden by studying the prevalence, causes and consequences of the diseases, especially for children living with epilepsy,
  • To develop an affordable and sustainable care model for people living with epilepsy, and their families,
  • To strengthen the neurology capacity of the center and
  • Donation of anti-epileptic drugs.

Two Congolese physicians are now the two full-time neurologists in the center. Our partnerships strengthened the technical equipment with a video-EEG and EMG. This enables the team to improve the precision of the diagnosis of epilepsy.

The mobile clinic outreach program reaches out to four health centers in the proximity of Lubumbashi. The number of consultations in those bi-monthly activities remains stable at 3 400. The medical staff completed over 1 900 consultations in the tertiary reference center in Lubumbashi.

Madagascar

In 2019 Humanity and Inclusion completed the third year of the partnership, funded through the ‘UCB Societal Responsibility Fund’ of the King Baudouin Foundation.

The ‘ANJARATSARA’ initiative provides tailored management of epilepsy at all levels of the health pyramid in the Boeny and Analanjirofo districts. In addition, the initiative improves the socio-economic integration of adults living with epilepsy and school access for children living with epilepsy.

This year saw tangible progress in different important areas. First, physicians and paramedical staff of basic health centers in the two districts received refresher trainings on epilepsy. Second, community health agents were also trained to improve their epilepsy knowledge and referral strategy. Third, the school was mobilized through theater plays. The role-play of marionettes helps children understand and the positive feedback of children and teachers was heartwarming.

The local teams further strengthened the Personalized Social Accompanying program (PSA). This PSA model has been designed by Humanity & Inclusion and has been successfully implemented in various sub-Saharan countries, including in Madagascar in other projects. The epilepsy PSA program aims at social participation and the empowerment of people living from epilepsy.

Mozambique

One Mozambican physician completed a pediatric neurology training under the supervision of the University of Leuven (Belgium).

The results of the implementation of the mental health GAP (mhGAP) in Mozambique were presented at the 4th African Epilepsy Conference in Entebbe. Mozambique is the first country to have successfully completed the implementation.

Myanmar

In 2019, an accelerated epilepsy training program in different townships of the Myanmar Epilepsy Initiative scaling up program was implemented. This is the continuation of the World Health Organization (WHO) pilot project under the National Framework for Epilepsy Care in Myanmar and supported by UCB. The framework provides a tailored model of epilepsy care at all levels of the healthcare system.

The WHO and the Ministry of Health and Sports are committed to building on the lessons learnt and evidence generated from this pilot project. The objective of the scaling up program is to ensure long term accessible, affordable and quality care for epilepsy in the country. The approach to scaling up epilepsy care in Myanmar is to reach gradually 85 townships in nine states/regions and to outline a policy and state-localized services within the Universal Health Coverage (UHC). UHC implies that all people receive quality, essential health services needed, without being exposed to financial hardship.

China

In China, the ‘Rainbow Bridge – Hope and Care for Children and Families with Epilepsy’ program, delivered with Project HOPE and the Shanghai Children’s Medical Center, has completed the third and final year of childhood epilepsy activities in remote China. A broad platform of institutional and academic support is available with the Chinese Association Against Epilepsy, the Neurology Committee, the Chinese Paediatric Society, the Chinese Medical Association and 14 associated university hospitals.

Epilepsy training for village doctors, China (photo)
Epilepsy training for village doctors, China

To date, the education initiative for medical personnel has brought together 633 paediatricians and general practitioners in classroom training and 40 000 physicians reviewed the on-line training course. Close to one million children living with epilepsy benefitting from these trainings.

In addition, Rainbow Bridge organized 3 family weekend workshops bringing together over 100 children living with epilepsy and family members. Parents receive quality time with the neurology staff in attendance and learn about the similarities, challenges and hope that unites them. In addition, community volunteers also join the activities or make facilities available free of charge or at a reduced cost.

Alongside the public education initiatives, workshops brought together teachers to improve their understanding of epilepsy and how-to act in case a child experiences a seizure in the class, in the schoolyard, during sport activities or at home. School teachers are key to the well-being of all children in school, including children living with epilepsy in the school environment.

Parents have created WeChat groups to ensure ongoing communication. It proves a valuable tool when children are discharged from hospital and parents have questions. These groups are supported by medical staff whenever medical questions or concerns are raised.

Our partnership in China, with the Business Development Center of the Red Cross Society of China entered the seventh and final year.

In 2019, the integrated epilepsy care model in Zigong city (Sichuan province) yielded important results. Epilepsy training was tailored to the needs of grassroots healthcare providers and prepared by the Zigong vocational school together with neurology staff of the first- and fourth-People’s Hospitals. The overarching objective of this Zigong model is to accelerate the detection, referral, diagnosis and treatment choice and adherence of persons living with epilepsy by linking, seamlessly, five layers of healthcare provision in the city. To date over 4 000 persons living with epilepsy have been identified and treated.

1 The donation for the two Fracarita Belgium initiatives in Rwanda and the RDRC amounts to [] persons/years treatment

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  • The Democratic Republic of Congo

    Democratic Republic of Congo

    In 2019, we celebrated the ten-year anniversary of our partnership with Fracarita Belgium in the neuropsychiatric center Dr Joseph Guislain in Lubumbashi. It is the oldest of UCB’s initiatives in low- and middle-income countries. It is built around four objectives:

    • To better understand the epilepsy disease burden by studying the prevalence, causes and consequences of the diseases, especially for children living with epilepsy,
    • To develop an affordable and sustainable care model for people living with epilepsy, and their families,
    • To strengthen the neurology capacity of the center and
    • Donation of anti-epileptic drugs.

    Two Congolese physicians are now the two full-time neurologists in the center. Our partnerships strengthened the technical equipment with a video-EEG and EMG. This enables the team to improve the precision of the diagnosis of epilepsy.

    The mobile clinic outreach program reaches out to four health centers in the proximity of Lubumbashi. The number of consultations in those bi-monthly activities remains stable at 3 400. The medical staff completed over 1 900 consultations in the tertiary reference center in Lubumbashi.

  • Rwanda

    Rwanda

    In Rwanda, several activities in our partnership with Fracarita Belgium have progressed significantly in 2019.

    Data were generated providing insights into the burden of neurological diseases in Rwanda. A three-pronged approach encompassing education, research and awareness building is further strengthening neurology and public health capacity:

    • In October, two Rwandan physicians started their third year of neurology training at the Cheikh Anta Diop University in Dakar (Senegal), while one started her second year. A fourth physician started her second year of a Master of Public Health program in Kigali,
    • A study of co-morbidity of epilepsy and depression was conducted by a physician in Ndera as part of a PhD supervised by the department of Neurology, Ghent University (Belgium). In addition, the teams presented Rwandan research data in six posters at the African Epilepsy Conference in Entebbe (Uganda) and
    • The Rwandan Organization Against Epilepsy completed an epilepsy awareness training for more than 1 800 community health workers and traditional healers in villages of the Musanze district.

    UCB has also progressed this year with the finalization of an in-country neurology curriculum to be offered jointly by the University of Rwanda and Ghent University. This five-year curriculum will strengthen neurology capacity, foster neurology sub-specializations through targeted sponsorship, provide expert EEG training courses, assist in the creation of disease registries for rare neurological conditions and support clinical research study capacity. The curriculum will be implemented in 2020.

  • China

    China

    In China, the ‘Rainbow Bridge – Hope and Care for Children and Families with Epilepsy’ program, delivered with Project HOPE and the Shanghai Children’s Medical Center, has completed the third and final year of childhood epilepsy activities in remote China. A broad platform of institutional and academic support is available with the Chinese Association Against Epilepsy, the Neurology Committee, the Chinese Pediatric Society, the Chinese Medical Association and 14 associated university hospitals.

    To date, the education initiative for medical personnel has brought together 633 pediatricians and general practitioners in classroom training and 40 000 physicians reviewed the on-line training course. Close to one million children living with epilepsy benefitting from these trainings.

    In addition, Rainbow Bridge organized 3 family weekend workshops bringing together over 100 children living with epilepsy and family members. Parents receive quality time with the neurology staff in attendance and learn about the similarities, challenges and hope that unites them. In addition, community volunteers also join the activities or make facilities available free of charge or at a reduced cost.

    Alongside the public education initiatives, workshops brought together teachers to improve their understanding of epilepsy and how-to act in case a child experiences a seizure in the class, in the schoolyard, during sport activities or at home. School teachers are key to the well-being of all children in school, including children living with epilepsy in the school environment.

    Parents have created WeChat groups to ensure ongoing communication. It proves a valuable tool when children are discharged from hospital and parents have questions. These groups are supported by medical staff whenever medical questions or concerns are raised.

    Our partnership in China, with the Business Development Center of the Red Cross Society of China entered the seventh and final year.

    In 2019, the integrated epilepsy care model in Zigong city (Sichuan province) yielded important results. Epilepsy training was tailored to the needs of grassroots healthcare providers and prepared by the Zigong vocational school together with neurology staff of the first- and fourth-People’s Hospitals. The overarching objective of this Zigong model is to accelerate the detection, referral, diagnosis and treatment choice and adherence of persons living with epilepsy by linking, seamlessly, five layers of healthcare provision in the city. To date over 4 000 persons living with epilepsy have been identified and treated.

  • Uganda

    Uganda

    In Uganda, the Duke Medicine, Global Neurosurgery and Neurology (DGNN) department of Duke University (Durham, the U.S.) completed their third year of activities, with funding from the UCB Societal Responsibility Fund of the KBF. The overall objective of the DGNN partnership is to build on synergies between our two organizations in improving access to quality epilepsy care in Uganda by sharing knowledge.

    The DGNN team provided training to two Ugandan physicians in adult and pediatric neurology and established the very first neurology clinic at the Mbarara University. The offices are built for consultations and EEG investigations and serve 20 to 25 persons living with epilepsy every day. The team also focused on epilepsy training for healthcare providers, community awareness and sensitization initiatives, as well as including traditional and pastoral healers in community health inventions.

    The DGNN, in collaboration of the Makerere University School of Public Health, PMA2020, Uganda Bureau of Statistics and Uganda Ministry of Health, completed the first phase of a cross-sectional nationwide epilepsy prevalence study. The data were presented at the African Epilepsy Conference in Entebbe (Uganda).

  • Madagascar

    Madagascar

    In 2019 Humanity and Inclusion completed the third year of the partnership, funded through the ‘UCB Societal Responsibility Fund’ of the King Baudouin Foundation.

    The ‘ANJARATSARA’ initiative provides tailored management of epilepsy at all levels of the health pyramid in the Boeny and Analanjirofo districts. In addition, the initiative improves the socio-economic integration of adults living with epilepsy and school access for children living with epilepsy.

    This year saw tangible progress in different important areas. First, physicians and paramedical staff of basic health centers in the two districts received refresher trainings on epilepsy. Second, community health agents were also trained to improve their epilepsy knowledge and referral strategy. Third, the school was mobilized through theater plays. The role-play of marionettes helps children understand and the positive feedback of children and teachers was heartwarming.

    The local teams further strengthened the Personalized Social Accompanying program (PSA). This PSA model has been designed by Humanity & Inclusion and has been successfully implemented in various sub-Saharan countries, including in Madagascar in other projects. The epilepsy PSA program aims at social participation and the empowerment of people living from epilepsy.

  • Myanmar

    Myanmar

    In 2019, an accelerated epilepsy training program in different townships of the Myanmar Epilepsy Initiative scaling up program was implemented. This is the continuation of the World Health Organization (WHO) pilot project under the National Framework for Epilepsy Care in Myanmar and supported by UCB. The framework provides a tailored model of epilepsy care at all levels of the healthcare system.

    The WHO and the Ministry of Health and Sports are committed to building on the lessons learnt and evidence generated from this pilot project. The objective of the scaling up program is to ensure long-term accessible, affordable and quality care for epilepsy in the country. The approach to scaling up epilepsy care in Myanmar is to reach gradually 85 townships in nine states/regions and to outline a policy and state-localized services within the Universal Health Coverage (UHC). UHC implies that all people receive quality, essential health services needed, without being exposed to financial hardship.

  • Mozambique

    Mozambique

    One Mozambican physician completed a pediatric neurology training under the supervision of the University of Leuven (Belgium).

    The results of the implementation of the mental health GAP (mhGAP) in Mozambique were presented at the 4th African Epilepsy Conference in Entebbe. Mozambique is the first country to have successfully completed the implementation.

The story of Marie-Josée

Marie-Josée, living with epilepsy (portrait)
Marie-Josée, living with epilepsy

Marie-Josée was born in 1994, in Kitabura, a little village in Rwanda down the road from the Kimonyi health center. The road is diced with volcanic stones strewn across an astounding green-colored landscape.

Marie-Josée’s story is a biography of epilepsy. She was born in 1994 at the crossroads of history as an inhumane genocide had just devasted the nation. She developed her first seizures at the age of 14. She was excluded from school and spent her time gardening vegetables in a small plot. When she had seizures, she stayed home, exhausted and too tired to work.

Early in 2018, she learned about an epilepsy program in Kimonyi and, quite determined, she climbed a long hill to the health center. Of course, her diagnosis was generalized tonic-clonic seizures. She started on anti-epileptic medication and walked every month up the hill. Soon she became seizure-free and she continues to conscientiously take her medication. She also met her future husband and now they are proud parents of a little boy.

Her gratitude is humbling, and the twinkles in her eyes and her glowing smile are a source of fulfilment and energy; energy and courage to accelerate our programs in Rwanda, especially in remote areas where a double disease burden is conferred on vulnerable patients – epilepsy and the scourge of social stigma.