3 Access to Health in CSR projects
The CSR department is accountable for actions relating to Material Aspects Access to Health and Medicines and Disease Awareness and Education in resource-limited countries. These aspects were considered very relevant to stakeholders.
Epilepsy is a common neurological disorder and it is estimated that 80% of the 70 million people living with epilepsy in the world live in sub-Saharan Africa. Epilepsy is associated with a high disease burden and stigma and in low and middle-income countries (LMIC) persons living with epilepsy are often deprived of access to quality epilepsy care.
Access to epilepsy care remains a complex public health challenge in LMIC. Limited or lack of qualified health care professionals and disease awareness at different levels of the society makes people living with epilepsy more vulnerable to poverty and social exclusion. Furthermore, barriers to quality epilepsy care in those resource-poor countries are manifold, such as poverty, walking distance to health centers, limited healthcare resources, among others.
Over the past 6 years, UCB’s CSR department, together with partners of the 9 ongoing initiatives in Africa and Asia, further fine-tuned the Access to Health vision by improving various initiatives and building on experience and expertise obtained in individual initiatives of access and health, medicine, disease awareness and education for underprivileged people living with epilepsy. The CSR department is responsible to review and to report regularly the implementation activities and the impact of the different activities.
In this context, UCB maintains the four pillars of the strategy:
- create inclusive epilepsy education platforms for health care providers, who often have limited knowledge on the disease, causes, diagnosis and treatment options;
- expand and accelerate community awareness programs of epilepsy as a chronic disease, to increase acceptance and social integration of people living with epilepsy in their family, school, social and economic network;
- advance access to diagnosis and treatment (within the countries’ treatment guidelines) offering holistic care; and
- create academic neurology platforms to train the next generation of researchers and neurologists building sustainable value to the country’s public health.
Under a shared responsibility philosophy, the CSR department adopted a sustainable and responsible relationship with the different partners, fully mindful of field realities and challenges, making realistic and impactful improvements for persons living with epilepsy.
Considering the R&D focus at UCB, there are no programs for neglected tropical diseases, high-burden diseases specific needs of developing countries; or for R&D partnerships.
3.1 King Baudouin Foundation (Belgium)
The UCB Societal Responsibility Fund was jointly launched by UCB and the King Baudouin Foundation (KBF) in 2014. The KBF is an independent, not-for-profit and highly-recognized organization established 35 years ago and has grown internationally through multiple partnerships globally.
This partnership is allowing UCB colleagues and stakeholders to financially support CSR initiatives through donations to the UCB Societal Responsibility Fund. Five initiatives are supported, i.e., Fracarita Belgium in Kigali (Rwanda), Fracarita Belgium in Lubumbashi (Democratic Republic of Congo), DukeMedicine, Global Neurosurgery and Neurology department (DNGG) of Duke University (Durham, U.S.) in Uganda, Humanity & Inclusion (Brussels, Belgium) in Madagascar and One Family Health (London, U.K.) in Rwanda.
In 2018, the management of the UCB Societal Responsibility Fund approved a concept paper of improving access to epilepsy care by creating neurology networks in Rwanda and Mozambique. The program will strengthen the capacity in neurology, foster neurology sub-specialization through targeted sponsorship, provide expert EEG training courses, assist in the creation of disease registries for rare neurological conditions, support clinical research study capacity and create disease awareness and education programs in those countries.
3.2 Duke Medicine (Uganda)
In 2018 the DGNN department (U.S.) of Duke University (Durham, U.S.) completed the second of the three-year funding by the UCB Societal Responsibility Fund of the King Baudouin Foundation.
The overall objective of our DGNN partnership is to build on synergies between our two organizations in improving access to quality epilepsy care in Uganda by sharing knowledge on disease awareness and education programs, training models, and infrastructure strengthening. Epilepsy trainings of health care providers and community awareness initiatives are designed to accelerate access to quality care and reduce diagnosis and treatment gaps and also have the impact of reducing stigma and social isolation of persons living with epilepsy. Preliminary data of the Practical and Cultural Barriers to Epilepsy Care study helped identifying barriers in a culturally appropriated manner and characterizing predictors of healthcare utilization patterns in urban and rural areas access. Ongoing analyses on these data and data pertaining to treatment and prevalence patterns will inform and maximize the effectiveness of our partnership work.
3.3 Fracarita Belgium – Kigali (Rwanda)
Fracarita Belgium is a fundraising arm for Brothers of Charity. In Rwanda, the activities with the Brothers of Charity have entered their ninth year. The local teams accelerated significantly in 2018 and provided improved in-depth insights in the epilepsy disease burden and care models. Next to continued donation of anti-epileptic medicines, further strengthening of the neurology and public health capacity is accomplished by a four-pronged approach:
- offering a Master of Neurology training to two physicians at the Cheik anta Diop University in Dakar (Senegal);
- offering a Master of Public Health training to one researcher at the Mount Kenia University in Kigali (Rwanda);
- continuing the epilepsy and depression as co-morbidity research study in the framework of the PhD program, under the supervision of Prof dr Paul Boon of Neurology Department of Ghent University (Belgium); and
- offering epilepsy trainings to traditional healers in villages of the Musanze health district.
In addition, a staff member of the Ruhengeri Hospital completed a three-month EEG training in Ghent, EEG equipment was provided to the Gikonko health center, the Butare neuropsychiatric hospital and the Ruhengeri referral hospital.
3.4 Fracarita Belgium – Lubumbashi (Democratic Republic of Congo)
Our partnership with the Brothers of Charity in the neuropsychiatric center Dr Joseph Guislain in Lubumbashi (Democratic Republic of Congo) is the oldest of the CSR initiatives and entered its tenth year. It is built around four objectives:
- better understanding of epilepsy disease burden, especially for children living with epilepsy;
- developing an affordable and sustainable care for people living with epilepsy, and their families;
- strengthening the neurology capacity of the center with one neurologist returning from the Cheik anta Diop University in Dakar (Senegal) and two physicians in neurology training, respectively in the first and last year; and
- donation of anti-epileptic drugs.
The mobile clinic outreach program continues to the four health centers in the proximity of Lubumbashi. In 2018, the number of consultations in those bi-monthly activities have increased by 34% to 3 347.
3.5 Humanity & Inclusion (Madagascar)
In 2018 Humanity and Inclusion completed the second of the three-year funding by the UCB Societal Responsibility Fund of the King Baudouin Foundation.
The Anjaratsara initiative aims to ensure the management of epilepsy at all levels of the health pyramid improving both the social integration of adults and school access for children living with epilepsy. Activities are implemented in the Boeny and Analanjirofo regions.
In this second-year, physicians and paramedical staff of basic health centers in the two districts received an epilepsy training to improve the diagnosis and treatment gaps. Also, community health agents were also trained to improve their epilepsy knowledge and align their referral strategy.
Following various awareness and education activities with the community health agents, an important number of persons living with epilepsy already came forward. Only 32% of those persons were on anti-epileptic treatment, illustrating the importance of this initiative.
3.6 One Family Health (Rwanda)
In 2018, One Family Health (OFH) entered the third and last year of a partnership with the UCB Societal Responsibility Fund of the King Baudouin Foundation.
Our partnership supports the OFH mission to improve access to quality essential medicines and basic health care services in remote and underprivileged communities in Rwanda. The NGO works closely with the government of Rwanda to bring a health post to every cell, the lowest administrative entity, in support of Universal Access to Care.
OFH will continue to work towards the objectives of this partnership, after the discontinuation of our partnership in 2019.
3.7 The Roch Doliveux Neurology Fellowship (Mozambique)
A PhD programme started under the supervision of Prof. Dr. Lieven Lagae, department of Pediatric Neurology of the KU Leuven University (Belgium). In addition, one pediatician started her first of two years child neurology training also under the supervision of Prof. Dr. Lieven Lagae.
3.8 World Health Organization (Myanmar)
In 2018, a four-year partnership with the World Health Organization was initiated to offer access to care in Myanmar’s Epilepsy Initiative scaling up program.
This program was a continuation of the successful five-year 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 and validated a model effective in offering an epilepsy coverage of 47%.
The World Health Organization 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 sustainability of 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). A cascade model of training will be adopted where the central level will provide training to the State/Regional level trainers (both in medical care – specialists in hospitals and public health sectors) and non-communicable diseases focal points at the Regional and State levels taking responsibility for the implementation in these townships.
3.9 Project HOPE (China)
The Rainbow Bridge – Hope and Care for Children and Families with Epilepsy program with Project HOPE and the Shanghai Children’s Medical Center has completed the second 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 for medical personnel brought together 2 529 pediatricians and general practitioners in classroom training, with over 553 000 children living with epilepsy benefitting from these trainings.
In addition, Rainbow Bridge organized family week-end workshops bringing together 24 children living with epilepsy and 55 family members. The joy and happiness of children playing games and learning about epilepsy while playing is heart-warming. Parents in the meantime receive quality time with the neurology staff in attendance and learn the similarities and challenges and hope that unites them. In addition, community volunteers also join the activities or make facilities available free of charge or at reduced costs. Teachers, physicians, pediatricians and volunteers exemplify the greatness of Chinese people.
Alongside the public education initiatives, also school teachers are invited to improve their understanding of epilepsy and how-to act in case a child experiences a seizure in the class, in schoolyard, in sport activities or at home. School teachers are key for the well-being of all children in school, including children living with epilepsy in the school environment. Different workshops brought together 70 teachers.
3.10 Business Development Center Red Cross Society of China (China)
The activities with the Business Development Center of the Red Cross Society of China (Beijing, China) completed in 2018 the sixth year of the partnership with UCB.
To date, over 1 500 village doctors of ethnic minorities in remote China from eleven provinces received tailored training. It has been estimated that close to 500 000 people benefitted directly from the new knowledge and skills acquired, including persons living with epilepsy. It is also estimated that close to 10 000 000 people benefitted indirectly from the training courses. Village doctors shared the training modules with their teachers in the township hospitals and during monthly training sessions other village doctors received the same training.
During field visits with village doctors, the relentless dedication of a village was witnessed to relief illnesses of the villagers. Their genuine and touchingly humane approach of their patients, in a holistic approach, is moving. Their medical curiosity and hunger for key knowledge to improve the lives of their neighbors, in their villages, was captivating.
In 2018, an integrated epilepsy care model was launched in Zigong City (Sichuan province). Epilepsy training, tailored to the needs of the health care providers, was prepared by the Zigong vocational school together with the neurology staff of the first and fourth People’s Hospital. 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, the five layers of health care provision in the city. Alongside community and school, activities will mobilize the people to understand the disease, to reduce the stigma and to improve the integration of persons living with epilepsy.
In addition, on the China Epilepsy Day, Phoenix Metropolis Media, as part of their CSR contribution, broadcasted, free-of-charge, an epilepsy video on their outdoor screens in five leading cities in China, reaching over 15 300 000 audience. The video featured several children of the GuangXi Zhuang Autonomous Region, Ms Li Ting (Olympic gold medalist) and Ms Li Rao as ambassadors of love for children living with epilepsy.
Moreover, CCTV-12 featured a video on the impact of the village doctor training in Inner Mongolia. Dr Zhang was followed during three days in his work and his reflections on his improved knowledge, on how it changed his attitude and practice towards patients in general and persons living with epilepsy. The documentary illustrated the remoteness and hardship of village doctors and persons living in these very remote parts of China.