A group of neurologists, called TROPALS, is determined to turn things around for people with ALS in Africa. The team has launched an unprecedented multicenter longitudinal study to describe ALS in Africa, and at the same time identify key challenges facing these populations in hopes to ultimately to develop interventions to improve their quality of life.
“We are working for the patients,” explains Athanase Millogo MD, head of the Department of Medicine, Bobo-Dialousso Teaching Hospital in Burkina Faso. “We are not sitting in our offices making computations. We hope to improve the outcome of people with the disease.”
This is a study to assess the availability of health workers and medications for clinical management of amyotrophic lateral sclerosis (ALS) in African hospital centers.
Availability and affordability analyses of disease-modifying treatments were performed. A multicenter observational study involving African hospitals was conducted. A standard questionnaire was developed based on the European Federation of the Neurological Societies (EFNS) guidelines.
The authors collected data on multidisciplinary care and availability of medicines. The availability and affordability were evaluated according to the WHO guidelines.
Nine hospital centers from eight African countries participated. The scientists observed a low degree of implementation of multidisciplinary care in ALS management. Riluzole was only available in centers from South Africa, Senegal, Tunisia, and Togo.
This treatment was unaffordable and the adjusted price was highly variable among countries. The cost of riluzole was partly or fully covered by patients, which implies a substantial economic burden.
The findings of the researchers strengthen the need to promote multidisciplinary care in the clinical management of ALS in Africa. Disease-modifying medication should be both available and affordable. Local and international collaboration is needed to improve ALS health care access in Africa.