Sickle cell disease (SCD) is a global health problem affecting millions of people around the world. It is estimated that more than 300,000,000 individuals worldwide have sickle cell trait (AS), the benign carrier condition. More than 500,000 infants are born with major haemoglobin disorders inclusive of more than 400,000 with SCD in Africa. In Ghana, about 15,000 babies are born with SCD every year.
World Sickle Cell Day is marked on 19th June every year ever since it was officially designated by the UN in December 2008 and first commemorated in June 2009. The goal is to increase public knowledge and understanding of SCD and related conditions, and the challenges experienced by patients, their families, and healthcare providers.
On World Sickle Cell Day (WSCD) and within the month of June, individuals, groups, and organizations host several activities across the world to further give hope to persons living with the disease to manage the disease and live more normal lives. As part of its public awareness activities to mark this year’s WSCD, the Sickle Cell Foundation of Ghana (Foundation) organized a virtual lecture via zoom webinar which brought together hundreds of health workers, families, persons living with SCD and health experts to deliberate on management of the disease amid the COVID-19 pandemic. It was the 2nd Annual WSCD Lecture of the Foundation, and it was themed ‘Managing Sickle Cell Disease in the Storm of a Deadly Global Pandemic’.
Professor Isaac Odame, Alexandra Yeo Chair in Haematology at the University of Toronto, Canada and Medical Director, Global SCD Network, in a presentation on ‘Effects of COVID-19 on a Person with Sickle Cell Disease’ noted that “the symptoms of COVID-19 and those of SCD are not very different. They include fever, chest pains, difficulty breathing, and pneumonia (acute chest syndrome in SCD), end organ damage and kidney failure”. According to him persons living with SCD are at a high risk for severe COVID-19, hence the advice for serious adherence to COVID-19 preventive measures. “In response to the pandemic, routine outpatient clinics have been suspended or scaled down in most centers. Telephonic consultations and parental visits for prescriptions without the child have been encouraged to minimize risk to patients. However, patients with acute illness should have 24-hour access to the emergency room and only patients who are sick are advised to come to the clinic to be seen”. Prior to emergency room visit, he advised patients to call ‘hotlines’ to be assessed.
Professor William Ampofo, Head of the Department of Virology at Noguchi Memorial Institute for Medical Research, University of Ghana, educated participants on the testing procedures for the Coronavirus of 2019 in Ghana. He educated participants on the two main patient categories for testing: those showing up at hospitals and suspected cases from contact tracing. He also spoke of the mandatory screening of people coming in from abroad.
He explained that the adopted national protocol directed that samples from the northern and part of the middle belt of the country are sent to Kumasi Center for Collaborative Research (KCCR) for testing while Noguchi covered part of the southern and most of the middle zones of Ghana. He also noted that the government’s strategy to close borders early and impose mandatory quarantine on travelers arriving from abroad helped in screening for the virus and revealed several imported cases. “With the help of the Ghana Health Service (GHS), scientific centers and laboratories have been established to aid in the testing for coronavirus among other diseases”, he said.
He also stated that the Komfo Anokye Hospital in Kumasi and the University of Allied Health Sciences in Ho, in the Volta Region have also joined in the screening and are currently providing diagnostic testing. “About 230,000 Ghanaians have been tested so far with two-thirds (2/3rd) tested at Noguchi”. He made mention of some private health facilities that are establishing their capacities to perform PCR testing for COVID-19. “These include Nyaho Hospital, MDS Lancet, and Akai House which have submitted their proposals for approval. All these and more to expand our testing centers available to manage the virus”.
In his Keynote Lecture: “Coping with Sickle Cell Disease in the Shadow of the Coronavirus”, the Guest Speaker for the day, Dr. Kofi Anie, MBE, Consultant Psychologist at London North West University Healthcare NHS Trust Haematology and Sickle Cell Centre, Central Middlesex Hospital, explained that “SCD causes much distress to patients and their families and poses significant psychosocial problems. Due to lack of knowledge about the disease, myths, and misconceptions, the perception around sickle cell disease is still not favorable. Some societies believe that someone living with sickle cell disease does not survive beyond childhood. The use of the term ‘Sickler’ by many creates the perception that sickle cell disease patients are always sick”.
He cautioned participants about stigmatization saying, “stigma may only cause loneliness, worry, and guilt; it makes people feel devalued, shunned, embarrassed and isolated”. Dr. Anie advised people with SCD and their caregivers on how to handle anxiety: “talk to family, friends, and health workers about their worries, cross-check information to avoid fear and panic, have personal time and space when needed, talk to children and reassure them, keep a daily routine and structure your day and, most importantly, maintain social contact”.
Speaking on the state of SCD in Ghana, the President of the Sickle Cell Foundation of Ghana, Professor Kwaku Ohene-Frempong, mentioned the Ghana-Novartis Public-Private Partnership in Sickle Cell Disease. He stated that “we were providing penicillin to children to protect them from infections that may lead to death. And now our partnership with Novartis which brought about the ‘Ahodwo’ Programme has made hydroxyurea affordable to Ghanaians. To date Novartis has delivered more than 6,000,000 capsules of hydroxyurea to Ghana and provided the Foundation with support to supervise the training of health workers on the use of the medicine.
He noted that: “Ghana currently has 18 active sickle cell treatment centers but needs about 40 to help in the management of the disease nationally”. He appealed to government to expand the newborn screening programme to help in screening all babies at birth.
Head of Global Health and Corporate Responsibility for Novartis Group, Dr. Patrice Matchaba also shared some insights on initiatives by Novartis in the management of COVID-19. He stated that “Novartis is working with Harvard University scientists to use our associated virus technology to study the coronavirus to produce a gene-based vaccine expected to go into human studies soon. As the largest medicine manufacturing companies in the world, Novartis will continue to discover innovative medicines, make them accessible, and deliver them ethically”.
On behalf of the Ghana National Petroleum Corporation (GNPC), Sponsor of the Kumasi Sickle Cell and Blood Centre, currently under construction, Dr. Kwame Baah-Nuakoh, General Manager for Sustainability at GNPC, reported that “GNPC finds its partnership with the Sickle Cell Foundation of Ghana a good one and we support all activities for the benefit of society and development”. He reiterated that GNPC would remain committed to the partnership and completion of the construction project.
Ahead of the Lecture, the Foundation had visited selected media organizations in Accra to educate the public about the disease. The organization also joined the Sickle Cell Disease Association of America (SCDAA) in a ‘MaskUp4SickleCell’ campaign which saw each member wearing a red face mask and taking pictures which were shared on social media with the hashtag #MaskUp4SickleCell to demonstrate support for sickle cell patients.
Editor’s Note
The Sickle Cell Foundation of Ghana (SCFG) is a non-governmental organization with the mission to support the development of resources and services to improve the health and quality of life of people with sickle cell disease and related conditions. The organization serves as an Agency of the Ministry of Health (MoH), as Programme Managers of the National Newborn Screening Programme for SCD. In addition, the SCFG, together with the Ministry of Health and the Ghana Health Service is a member of the Ghana-Novartis Public-Private Partnership in Sickle Cell Disease.
