12-13 July, 2023
The Muhimbili University of Health and Allied Sciences (MUHAS) Sickle Cell Programme in collaboration with SickleInAfrica, Sickle Pan-African Research Consortium (SPARCO), Sickle Africa Data Coordinating Centre (SADaCC), the Sickle Cell Disease Research Network in Central Africa (REDAC), American Society of Hematology – Consortium on Newborn Screening for Sickle Cell Disease in Africa (ASH-CONSA), Oxford Nanopore Technologies, PEN-Plus, Novartis and Platform Life Sciences convened a Symposium on Sickle Cell Disease (SCD) which was held at MUHAS in Dar-es-salaam, Tanzania from 12th – 13th July 2023. The theme of the Symposium was “From Newborn Screening to Gene Therapy for Sickle Cell Disease: Challenges and Prospects in Africa,” and featured launch of The Lancet Haematology Special Commission titled “Defining Global Strategies to Improve Outcomes in Sickle Cell Disease: A Lancet Hematology Commission.”
Guest of Honor at the Symposium was The Chief Medical Officer, Prof. Tumaini Nagu, representing Minister of Health, Hon. Ummy Mwalimu. This symposium was attended by over 150 in-person and 200 virtual participants who are key stakeholders in Sickle Cell Disease (SCD), including Tanzania government officials from the Ministry of Health (MOH), Ministry of Education, Sciences and Technology (MoEST) and President’s Office-Regional Administration and Local Government (PORALG), SickleInAfrica, SPARCO, SADaCC, REDAC, ASH-CONSA, Industry, Academicians, Researchers, Healthcare Givers and Patient Representatives from across the globe. In-person attendees came from Africa (Tanzania, Kenya, Uganda, DRC, Zambia, Zimbabwe, South Africa, Mozambique, Nigeria, Senegal, Gabon, Tunisia), Europe (Portugal, Switzerland, Spain, UK) and North America (Canada, United States).
Welcoming remarks were given by MUHAS Acting Vice Chancellor, Prof. Appolinary Kamuhabwa, who highlighted the progress made by MUHAS 60 years since its inception, whereby currently over 100 degree programmes are offered at the university, including 20 super-specialty level programmes, the East African Center of Excellence in Cardiovascular Sciences at Mloganzila Campus and plans for further expansion outside Dar es salaam to Kigoma region in Tanzania. All these efforts support MUHAS core functions: teaching, research, and consultancy. The Vice-Chancellor also acknowledged the role that the MUHAS Sickle Cell Programme has played in 20 years of its operations, which has contributed to advocacy, training, research and healthcare provision for patients with SCD in the country and in the region. The representative of US Ambassador, Alison Johnson, who is also Deputy Country Director of the CDC, highlighted the support that the US government has provided in Tanzania and Africa in the area of SCD through the National Institutes of Health (NIH) funding. Dr. Rehema Horera, representing Permanent Secretary, MoEST, also conveyed greetings and congratulatory note to MUHAS on behalf of the MoEST.
The Chief Medical Officer, Prof. Tumaini Nagu, officially launched the Symposium and The Lancet Haematology commission on behalf of the Minister of Health. In her speech, she emphasized the support of the Tanzania government towards improvement of care and management of patients with SCD, highlighting key achievements such as signing of the current SCD clinical management guidelines and facilitating access to Hydroxyurea, an essential drug for patients with SCD, by including it in the National Essential Medicines List, therefore making it possible for it to be procured and supplied by the Medical Stores Department to the public health facilities in the country.
The launching of The Lancet Haematology Commission was preceded by presentations from the commission members with the main theme titled,’ Defining global strategies to improve outcomes in SCD.’ Under this theme, the Lancet commissions’ goals and recommendations were defined. Among the proposed strategies to improve the outcomes in the management of SCD include need for unity among SCD stakeholders, prioritization of resources, and patient-centered education, also collection of epidemiological data using standardized tools to track the burden of SCD and the progress made. Another strategy discussed was the development of a universal curriculum for training healthcare providers so as to improve the uptake of several interventions adopted in SCD management guidelines.
Among the key agendas of this symposium were the discussions on the adoption of advanced therapy in the management of SCD. Evidence on the successful bone marrow transplant for SCD in Tanzania was underscored in the presentation made by Dr. Stella Malangahe from Benjamin Mkapa Hospital, whereby 4 SCD patients have successfully undergone the procedure thus far. Dr. Kwaku Marfo from Norvatis also pointed out various gene therapies in the pipeline. The role of Sickle CHARTA in advanced therapy in Tanzania was further defined by Dr. Daima Bukini who detailed how the program has enabled screening of patients from the SPARCO-Tanzania registry for eligibility for exchange transfusion and bone marrow transplant. The enrollment of SCD patients and research activities involved under the SickleInAfrica consortium comprised of eight countries, including Tanzania, Uganda, Nigeria, Ghana, Mali, Zambia, Zimbabwe and South Africa, was presented by Prof. Julie Makani. The patients’ representatives, Ms. Arafa Salim and Ms. Lwimba Kasongo, stressed the necessity for universal accessibility and affordability of advanced therapy for SCD patients, government prioritization of the basic foundational care for SCD patients, such as newborn screening, pain management, availability of hydroxyurea and continuous collaboration between patient organizations, researchers, and healthcare providers.
Progress and plans to scale up newborn screening for SCD in Africa under ASH-CONSA were presented by Dr. Enrico Novelli. Up to now, 97,000 newborns have been screened in seven African countries. Dr. Colin Pfaff presented on PEN-Plus’ Initiative towards increasing access to medications, training of mid-level health care providers and continuous mentorship at the district-level facilities. Dr. Gerald Goh from Oxford Nanopore Technologies highlighted on nanopore sequencing and other emerging technologies with the potential to improve the diagnosis and management of patients with SCD. Furthermore, the need to improve care for patients with SCD through global partnerships in resource mobilization and government funding was encouraged by Dr. Isaac Odame. Prof. Adekunle Adekile sensitized the establishment of Centres of Excellence for SCD in Africa to improve training, research, and healthcare provision for patients with SCD.
Three plenary sessions followed by discussions were held during the second day of the Symposium. The first session focused on the clinical management of SCD in sub-Saharan Africa (Plenary talk – Prof. Ibrahima Diagne from Senegal), whereby it was proposed that care for SCD patients should be decentralized to low-level facilities; also, patients, parents, and caregivers should be well informed on SCD and the therapies available, and the need to integrate psychosocial therapy in sickle cell clinics. The second session was on public health interventions for SCD (Plenary talk – Dr. Omary Ubuguyu from Tanzania), whereby the need to involve community health workers in SCD management was emphasized, including the need for governments to commit to allocate funds to support SCD interventions as a way to ensure sustainability. The third session was on COVID-19 and SCD (Plenary talk – Prof. Jean Nachega from USA), indicating the need for further studies on the outcomes of COVID-19-infected SCD patients.
At the end of the meeting, the Acting Deputy Vice-Chancellor – Academic, who is also SPARCO-Tanzania Principal Investigator, Prof. Emmanuel Balandya, gave a vote of thanks to organizers and all participants and encouraged all members to continue working together towards improving care for patients with SCD in Africa.