Public-Private Partnership To Improve The Lives Of People With Sickle Cell Disease

• To date, more than 2,000 people with sickle cell disease are receiving hydroxyurea, the current standard of care, in 11 treatment centers across Ghana

• The partnership, launched in November 2019, is a collaboration between the Government of Ghana, the Sickle Cell Foundation of Ghana and global medicines company Novartis

• Approximately 15,000 babies are born with sickle cell disease every year in Ghana

Accra, June 19, 2020 – Today, on World Sickle Cell Day, the Sickle Cell Foundation of Ghana reports on progress made to date through the public-private partnership with the Ministry of Health, Ghana Health Service and global medicines company Novartis.

Since launch, more than 2,000 patients have been receiving hydroxyurea, the global standard of care for the treatment of severe sickle cell disease, in 11 treatment centers across Ghana.

“Without early diagnosis and preventive treatment, more than half of the children born with the sickle cell disease in sub-Saharan Africa will die before their fifth birthday,” said Professor Kwaku Ohene-Frempong, President of the Sickle Cell Foundation of Ghana.

“Ghana was among the first countries in Africa to make hydroxyurea available on a large scale to people with sickle cell disease, and I believe it can serve as a role model on the continent for improving the diagnosis and management of the disease.”

Launched in 2019, the partnership aims to improve the lives of people with sickle cell disease. Partners are collaborating on a holistic approach that includes improving access to diagnosis and treatment; field-testing national treatment guidelines; and establishing centers of excellence across the country.

To date, Novartis has delivered more than 6,000,000 capsules of hydroxyurea to Ghana and provided support for the necessary laboratory monitoring, in an effort to help ensure the availability of the medicine during the COVID-19 pandemic.

Hydroxyurea is a commonly used medicine for people with sickle cell disease in developed countries and is approved for use in both adults and children. In October 2018, the Ghana Food and Drugs Authority (FDA) granted marketing authorization to Novartis hydroxyurea, making it the first time that hydroxyurea is approved for this indication in Ghana.

A recent study, published in the New England Journal of Medicine indicates that hydroxyurea treatment is effective and safe in children with sickle cell disease in sub-Saharan Africa and reduces the incidence of pain events (vaso-occlusive crises), malaria, death, and the need for blood transfusions.

“We are deeply committed to reimagining the treatment and care for people with sickle cell disease in Ghana and across sub-Saharan Africa,” said Roland Hammond-Addo, Strategic Marketing Lead for the Africa Sickle Cell Disease Programme at Novartis in Ghana. “In...to improve the health and quality of life of people with sickle cell disease addition to making hydroxyurea available and accessible, we are progressing with the development of a child-friendly formulation, and we hope to be able to initiate clinical trials with our next-generation treatment, crizanlizumab, within the year.”

With support from Novartis, the Sickle Cell Foundation of Ghana and other local partners are rolling out a clinical management app to help ensure hydroxyurea is administered safely and that patients are gaining the maximum benefit from the treatment. Field-testing is currently underway with approximately 50 healthcare professionals across the 11 centers.

In order to further advance Ghana’s national health agenda to improve the health and wellbeing of people with sickle cell disease, Novartis has signed an additional memorandum of understanding with the University of Ghana to promote education, research, advocacy, and capacity-building. The collaboration includes plans for monitoring and evaluation to inform the next steps of sickle cell programme and report on outcomes.

Sickle cell disease is recognized by the World Health Organization as a public health priority and a neglected health problem in sub-Saharan Africa. Approximately 80% of individuals with SCD globally are born in sub-Saharan Africa, and there is evidence to suggest that more than half of affected individuals may die before the age of five due to preventable complications. In Ghana, it is estimated that 15,000 babies are born with sickle cell disease every year.

● Sickle cell disease is a debilitating, inherited blood disorder. It causes affected red blood cells to become sickle-shaped, stiff and fragile – easily breaking apart. Blood vessels and blood cells become sticky due to damage caused by sickle cells and ongoing chronic inflammation.

That leads to blood cells sticking to each other and to the blood vessels and causing blockages – called vaso-occlusion - which can lead to the acute episodes of pain (known as sickle cell pain crises or vaso-occlusive crises), stroke and other life-threatening complications. It is a lifelong illness that can put an emotional, physical, and financial burden on patients and their families.

● Hydroxyurea is currently available at 11 centers across Ghana that have been trained on using the medicine: Korle Bu Teaching Hospital, Komfo Anokye Teaching Hospital, Tema General Hospital; Greater Accra Regional Hospital; University of Ghana, Legon Hospital; Ho Teaching Hospital; Effia Nkwanta Regional Hospital; and, Presbyterian Hospital, Agogo. Hydroxyurea will be made available to additional centers as more centers are identified and healthcare professionals trained.

Discussions are underway to include hydroxyurea and associated laboratory testing in the National Health Insurance Scheme.

● The five-year public-private partnership aims to improve and extend the lives of people with SCD through a comprehensive approach to screening and diagnosis; treatment and disease management; training and education; and elevating basic and clinical research capabilities.

Specifically, the partners aim to collaborate on field testing and implementation of SCD treatment guidelines, the establishment of centers of excellence across regions and the implementation of newborn screening...to improve the health and quality of life of people with sickle cell disease at these centers.

In addition, partners plan to employ digital technologies to monitor and evaluate patient registration, report real-time data, and help ensure safe large scale roll-out of medicine.

● The scope of the memorandum of understanding between the University of Ghana and Novartis includes:

− Training and coaching of healthcare professionals on current disease trends

− Implementation of independent research including monitoring and evaluation to inform the SCD programme and report on outcomes

− Development of patient-centered material, training and mentorship programmes

− Capacity-building efforts for the prevention, management, and control of SCD