In early 2020, the ‘Rainbow Bridge – Hope and Care for Children and Families with Epilepsy’ stage II program, run by Project HOPE and the Shanghai Children’s Medical Center, developed a series of videos for healthcare professionals and for patients’ families, addressing different topics related to epilepsy. These were published on dedicated WeChat platforms. Scientific support was provided by the Chinese Association Against Epilepsy, China’s Neurology Committee, the Chinese Pediatric Society, the Chinese Medical Association and 14 associated university hospitals.
Meanwhile, UCB’s partnership with the Business Development Center of the Red Cross Society of China, entered its final year. Despite the impact of COVID-19, the integrated epilepsy care model in Zigong city (Sichuan province) continued to facilitate early detection, swift referral, adequate diagnosis and treatment choices for persons living with epilepsy. To date, over 4 500 persons with epilepsy have been offered integrated epilepsy care through this model.
In addition, the evaluation of the impact of the village doctor training in Yunnan by Peking University, University of North Carolina and Stanford University was completed and findings are published in different international journals.
The Democratic Republic of Congo
In 2020, UCB’s partnership with Fracarita Belgium continued to support the neuropsychiatric center in Lubumbashi, although activities were online only due to COVID-19.
Two neurologists provide full-time support to epilepsy patients who visit the hospital or its mobile clinics, which allows them to diagnose and treat these individuals in an affordable and sustainable way.
In the meantime, one physician started his third Master of neurology year at the Cheikh Anta Diop University in Dakar (Senegal) and another physician started his first year.
2020 marked the fourth year of our partnership with Humanity and Inclusion to support the ‘Anjaratsara’ initiative in the Boeny and Analanjirofo districts. This year, the integration of an epilepsy management approach at different levels of the health system was completed, providing ongoing local monitoring and assistance to people living with epilepsy in the Personalized Social Accompanying program (PSA), despite disruption caused by COVID-19.
The Humanity and Inclusion country team also offered their knowledge, skills and field staff to the Madagascar Health Authorities in dealing with the epidemic, while continuing to work towards maintaining access to medication for persons with epilepsy.
In 2020, the Myanmar Epilepsy Initiative continued several epilepsy community awareness activities and training of healthcare providers for a third year, under the National Framework for Epilepsy Care, supported by the World Health Organization (WHO) and funded by UCB.
While neurologists were challenged by the impact of COVID-19 on vulnerable communities, the ongoing commitment of the WHO and the Myanmar Ministry of Health and Sports to scaling up efforts ensured accessible, affordable and quality care. To date, some 60 townships in five states and regions are engaged in the program, meaning that people living with epilepsy can access high-quality epilepsy care without being exposed to financial hardship.
Despite the constraints induced by the COVID-19 pandemic, our partnership with Fracarita Belgium progressed significantly:
- In October, two Rwandan physicians started their fourth and last Master of Neurology training year at the Cheikh Anta Diop University in Dakar, while another physician started her third year.
- A PhD-level research into epilepsy and depression as co-morbidities at Ndera Neuropsychiatric Hospital, under the supervision of the Neurology Department of Ghent University (Belgium) and the University of Rwanda, has entered in its final stage.
- At a local level, greater involvement of community health workers has helped mobilize people living with epilepsy to seek a diagnosis.
Thanks to UCB funding, the Duke Medicine, Global Neurosurgery and Neurology (DGNN) department of Duke University (Durham, the U.S.) initiated a fourth year of neurology activities in Uganda. The overall objective of this partnership is to expand treatment capacity by training physicians and by establishing epilepsy centers of excellence in Uganda.
In 2020, as part of our commitment to healthier societies, we continued working towards improving access to quality care for persons living with epilepsy in low- and middle-income countries.
In many such countries, access to quality epilepsy diagnosis, treatment and care remains a complex challenge, while a lack of qualified healthcare professionals and limited disease awareness contributes to poverty, stigma and social exclusion among patients.
We have seven ongoing projects in Africa and Asia, which aim to advance inclusive epilepsy education for healthcare providers, increase community awareness programs about epilepsy as a chronic disease, improve access to diagnosis and treatment, and build capacity for the next generation of local researchers and neurologists through access to training.
Two initiatives, Fracarita Belgium Rwanda and Fracarita Belgium Democratic Republic of Congo, are supported by the UCB Societal Responsibility Fund, initiated by UCB and managed by the King Baudouin Foundation (KBF). Building on the experience gained through these ongoing projects, we have defined a future approach focused on innovation and partnership efforts for new value chain and enterprise models. We will start implementing a social business in 2021, focusing on two first pilots in India and Rwanda, and will report first progress on this new approach at UCB at the end of 2021.
Spotlight on Fidele Sebara, Chief Neurologist, CARAES Neuropsychiatric Hospital, Ndera, Rwanda
Fidele Sebara is the chief neurologist at the CARAES Neuropsychiatric Hospital in Rwanda. Looking back on his fifteen-year tenure, Fidele recalls how, when he returned to Rwanda following his neurology studies, he discovered there was still a lot of work to be done in increasing awareness and understanding of epilepsy. But he also notes that things have evolved in recent years, thanks in part to the longstanding collaboration between UCB and Fracarita Belgium: “We’ve been able to improve the knowledge of the government about epilepsy. Authorities now understand and work well with us to better treat patients.”
Fidele is particularly excited about the fact that a neurology curriculum, developed in partnership with Ghent University, will soon be available at the University of Rwanda. “This to me feels like the biggest achievement”, he says. “Students are now training in Dakar with UCB grants, but soon we will be able to offer a neurology curriculum in Rwanda itself. This opens up so many more possibilities for people to enter the field of neurology and help more patients.”