Date and TimeDate: Saturday, 21 September 2024
Time: 12:00 – 1:30 pm EDT
Location: New York, USA
Format: Hybrid
(Zoom Link: https://nyu.zoom.us/j/97079168115)Venues: New York, USA: The Permanent Mission of the United Republic of Tanzania to the United Nations is at 307 E 53rd St, New York, NY 10022, from
12:00 to
1:30 p.m. EDT.
London, UK: Tanzania High Commission, 3 View Road, Highgate, London N6 4DJ at 17:00 – 18:30 BST
Dar es Salaam, Tanzania: Hyatt Regency Hotel at 19:00 – 20:30 EAT
BackgroundAchieving the Sustainable Development Goals (SDGs) for health in many countries in Africa will include addressing sickle cell disease (SCD), a chronic non-communicable disorder (NCD). Africa is the epicentre of the disease: an estimated 80% of patients live in Africa, and more than 300,000 new babies with SCD are born on the continent each year. Historically, health systems in many African regions have had limitations in providing optimal preventative and therapeutic healthcare over the life course of patients with SCD. The result has been high rates of mortality and severe morbidity beginning in early childhood. In this context, the current era of scientific innovation holds promise for helping patients, health workers, policymakers, and other stakeholders sustainably impact universal healthcare as it relates to SCD.
Some of the most significant advances in science have been in genomics, with the completion of the Human Genome Project in 2003 and Gene Editing, with recognition of the latter by the Nobel Prize in 2020 to Jennifer Doudna and Emmanuelle Charpentier. The translation of genomic science to improve health has resulted in clinical trials with a cure for sickle cell disease using gene therapy. This has led to an increase in investment and interest from key stakeholders, particularly the patient community, as well as discussion to ensure equity and access to these interventions and integration within the existing interventions and health systems.
Tanzania convened three (3) global side events of sickle cell sessions during UNGA in New York (2022 and 2023) and at the USA-Africa Leaders’ Summit in Washington (2022).
click this link for more details. In 2023 at science summit at UNGA 78
Click here, the focus was to develop strategies to improve health in sickle cell disease through the generation and application of scientific knowledge.
The event speakers featured global leaders in SCD focused on biomedical research and health. The event served to educate a diverse audience of stakeholders on current research efforts underway and to foster dialogue that will inform strategies for accelerating SCD-focused science, promoting the development of research infrastructure through a partnership with global partners, and assuring the sustainability of science in improving the health of SCD in Africa and globally.
In 2024, the UNGA SCD side event aims to bring together key global stakeholders, Heads of State, Ministers of Health, representatives from the World Health Organization (WHO), Development Partners, Academic Institutions, Funders and other International Collaborators to discuss the global strategy to address Sickle Cell Disease. This disease disproportionately affects communities with African ancestry.
The High-Level Forum on Sickle Cell Disease aims to convene key stakeholders from various sectors to discuss the current state of SCD, share best practices, and develop actionable strategies to improve the lives of those affected by the disease.
The session will address four key areas: Health, Science, Policy and Partnership.
- Improve Health
- Promote Early Diagnosis and Screening. The forum emphasises the importance of early diagnosis and screening for SCD to improve patient outcomes by advocating for the widespread implementation of newborn screening programmes and the public health benefits of early interventions.
- Establish Comprehensive Care and Management. This includes integrating a multidisciplinary approach to providing holistic support to patients and families from acute to chronic care and appropriate medical, mental, and social support services.
- Establish Standards of Care. This will ensure consistency and quality in SCD management across different regions in healthcare settings, including training healthcare providers and improving best practices at all levels of healthcare.
- Promote Health System Strengthening. This is essential to providing effective and sustainable SCD care. This objective will focus on improving infrastructure, training healthcare professionals, and ensuring the availability of essential medicine and resources, which will build capacity for managing SCD and other chronic conditions more effectively.
- Strengthen universal healthcare from Primary, secondary, and tertiary levels. This will include healthcare in the community and referral pathways to increase access to specialized healthcare within countries.
- Advocate for Science, Technology and Innovation.
- This forum will advocate for increased scientific research in areas including basic, clinical, implementation, social and behavioral sciences. In particular, clinical trials, genomic research in areas with high prevalence of disease. Innovation in medical technology and pharmaceuticals towards new therapy for improving the quality of life and making curative therapy available for SCD.
- Advocate for Policy review and increase Investment.
- This forum will encourage policy makers to prioritize SCD in national health agenda and allocate sufficient resources to support better healthcare access, insurance coverage and patients’ rights.
- Increasing funding from Governments, international organizations and private sector is important to support universal healthcare and strengthen research
- Enhance Global Partnerships
- The forum seeks to foster global collaboration by bringing together stakeholders from different countries and organizations to share knowledge, strategize and best practice. By building strong global partnerships, we can coordinate the efforts to implement the effectiveness programs and policies in health and science.
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- Date and Time
- Date: Saturday, 21 September 2024
- Time: 12:00 – 1:30 pm EDT
- Location: New York, USA
- Format: Hybrid (Zoom Link: https://nyu.zoom.us/j/97079168115)
- Venues:
- New York, USA: Permanent Mission of the United Republic of Tanzania to the United Nations - 307 E 53rd St, New York, NY 10022 at 12:00 – 1:30 pm EDT.
- London, UK: Tanzania High Commission,
