Expanding the Novartis Africa Sickle Cell Disease program

SCD is a neglected health problem in sub-Saharan Africa, which carries 80% of the global disease burden. Approximately 1 000 children in Africa are born with SCD every day. More than half die before they reach age 5.

In 2020, we expanded our Africa SCD program with three new memoranda of understanding with the ministries of health of Uganda, Tanzania and Kenya. The program, first launched in Ghana in November 2019, aims to improve and extend the lives of people with SCD in sub-Saharan Africa. We plan to reach a total of 10 countries by 2022.


The number of countries we plan to reach by 2022 through our Africa sickle cell disease program

This expansion represents another major step forward in putting the Novartis access principles into action to treat SCD at scale. Within the scope of the program, Novartis and its partners are collaborating to develop a comprehensive approach that makes screening, diagnosis and treatment available, accessible and affordable for patients, and that promotes scientific research, training and education. We have registered hydroxyurea, the global standard of care for the treatment of SCD, in Uganda, Tanzania and Kenya. Treatment guidelines are in place, and we are currently working with the ministries of health to conduct trainings for healthcare professionals, identify and set up centers of excellence, and further scope out the details of the respective partnership agreements. In October, we officially launched our partnership with the Ministry of Health in Uganda.

In Ghana, the program has been progressing well since launch. More than 3 400 patients have been treated with hydroxyurea in 11 treatment centers across the country. In total, Novartis has delivered more than 6 million capsules of hydroxyurea, providing SCD patients in Ghana with uninterrupted access to treatment during the global COVID-19 pandemic.

Together with our implementation partner, the Sickle Cell Foundation of Ghana (SCFG), we are working to increase awareness of the disease, encourage newborn screening, and address the stigma associated with the disease. In addition, we are employing digital technologies to help optimize diagnosis and disease management. In the past two years, we supported the SCFG in developing and rolling out a newborn screening mobile application, which has helped manage data from more than 17 000 babies in Ghana. Within the scope of our current memorandum of understanding, and taking into account the learnings from the screening app, we contributed to the development of a clinical management app to help ensure hydroxyurea is administered safely and that patients receive the maximum benefit from the treatment. In 2020, the app was rolled out to 11 treatment centers, with more than 2 200 patients already registered.

In June, Novartis signed a memorandum of understanding with the University of Ghana to collaborate on promoting education, research, advocacy and capacity building, with the goal of advancing Ghana’s national health agenda to improve the health and well-being of people with SCD. This includes monitoring and evaluation activities to assess the impact of the Africa SCD program.

Moving forward, the priority will be to initiate field testing of treatment guidelines across more than 20 healthcare institutions in Ghana. We expect to start field testing in the first half of 2021. Together with the Ministry of Health and the SCFG, we are also working to identify and establish 12 centers of excellence for SCD in the country in early 2021.

We continued our efforts to develop a child-friendly formulation of hydroxyurea, which was submitted for registration in Ghana in October. Submissions in Uganda, Tanzania and Kenya are planned for 2021.

Due to COVID-19, the two clinical trials planned to start in 2020 in Ghana and Kenya for crizanlizumab, a novel targeted biologic therapy that reduces pain events in people with SCD, have been delayed. We have received health authority and ethics committee approval in both Ghana and Kenya for the STAND trial, a Phase III trial to assess the efficacy and safety of crizanlizumab in adolescents and adults with SCD, and site initiation visits have started in Ghana. These trials represent the first time that a non-vaccine biologic therapy will enter multicenter clinical trials in sub-Saharan Africa (excluding South Africa).

In February, Novartis joined the World Bank, the World Health Organization (WHO) and the US Department of Health and Human Services as a founding member of the Global Coalition on Sickle Cell Disease. The coalition aims to develop, organize and implement a global multisectoral initiative to combat SCD in Africa, with an initial focus on countries that have the ability to provide the basic primary care required to treat people with SCD.

In addition to our work to help improve the standard of care for people with SCD, we are committed to expanding the reach of cutting-edge innovations to patients everywhere who need them, including in SSA. We are starting a collaboration with the Bill & Melinda Gates Foundation to explore the discovery of in vivo gene therapies for SCD, whereby cells are modified inside the body, which has the potential to facilitate access to these advanced therapies in lower-resource settings.