Strengthening global partnerships for sustainable sickle cell disease care: insights from SickleInAfrica at the 77th United Nations General Assembly and the US-Africa Leaders' Summit.

IF 7.1 2区 医学 Q1 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH BMJ Global Health Pub Date : 2025-03-13 DOI:10.1136/bmjgh-2024-017154
Irene Kida Minja, Siana Nkya, Daima Bukini, Nesia Mahenge, Upendo Masamu, Janeth Manongi, Josephine Mgaya, Frank Mtiiye, Malula Nkanyemka, Eka Patricia Kisali, Isihaka Mwinchande Mahawi, Aisha Rifai, Agnes Jonathan, Victoria Nembaware, Mario Jonas, Nicola Mulder, Ruth Namazi, Deogratius Munube, Vivian Paintsil, Raphael Zozimus Sangeda, Hans Ackerman, Ruhl Parker, Fred Stephan Sarfo, Aldiouma Guindo, Obiageli Eunice Nnodu, Emmanuel Balandya, Sarah Kiguli, Catherine Chunda-Liyoka, Patience Kuona, Emmanuel Peprah, Appolinary Kamuhabwa, Julie Makani
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Abstract

Background: Addressing sickle cell disease (SCD) is crucial for achieving health-related Sustainable Development Goals, particularly in Africa. The region is significantly affected, with 78.7% of patients with SCD residing in sub-Saharan Africa and over 515 000 newborns diagnosed annually. Historically, African health systems have struggled to provide optimal care for patients with SCD, resulting in high under-5 mortality and severe childhood morbidity. Scientific innovations and stakeholder engagement offer hope for improving SCD outcomes.

Objective: To explore the role of high-level partnerships and scientific innovation in advancing SCD care and research in Africa, focusing on the contributions and strategic engagements of the SickleInAfrica, as highlighted at the 77th United Nations General Assembly (UNGA) and the US-Africa Leaders' Summit.

Approach: SickleInAfrica, comprising eight countries, leverages a robust infrastructure for SCD research and care. The consortium has established a comprehensive SCD database and a patient registry in each of the consortium sites that includes demographic details, clinical diagnosis, management details and follow-ups/visits. Currently, over 34 000 patients with SCD are enrolled, making it the largest globally. It has also contextually adapted clinical guidelines for managing SCD for all levels of care. The high-level engagements at the 77th UNGA held in September 2022 in New York and the US-Africa Leaders' Summit held in December 2022 in Washington DC promoted SCD awareness and partnerships. The UNGA session emphasised biomedical science, implementation research and partnerships in therapeutic development, while the US-Africa Leaders' Summit session focused on Global Partnerships for SCD: Advancing Science and Technology for Health in Africa.

Conclusions: High-level engagements facilitate cross-border dialogues, underscoring the importance of partnerships from grassroots to global alliances. Key outcomes include increased awareness, policy advocacy and the establishment of SCD Centres of Excellence and genomics capacity-building initiatives. Sustainable efforts require robust partnerships, government involvement, community awareness and equitable access to advanced therapies.

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背景:解决镰状细胞病(SCD)问题对于实现与健康相关的可持续发展目标至关重要,尤其是在非洲。该地区受到严重影响,78.7%的 SCD 患者居住在撒哈拉以南非洲地区,每年有超过 515 000 名新生儿被确诊。从历史上看,非洲的医疗系统一直在努力为 SCD 患者提供最佳治疗,导致 5 岁以下儿童死亡率和儿童发病率居高不下。科学创新和利益相关者的参与为改善 SCD 的治疗效果带来了希望:探讨高层伙伴关系和科学创新在推动非洲 SCD 护理和研究方面的作用,重点关注第 77 届联合国大会 (UNGA) 和美国-非洲领导人峰会上强调的 SickleInAfrica 的贡献和战略参与:SickleInAfrica 由八个国家组成,利用强大的基础设施开展 SCD 研究和护理。该联盟已在每个联盟地点建立了一个全面的 SCD 数据库和一个患者登记册,其中包括人口统计详情、临床诊断、管理详情和随访/就诊情况。目前,登记在册的 SCD 患者超过 34 000 人,是全球规模最大的 SCD 患者登记处。它还根据具体情况调整了各级医疗机构管理 SCD 的临床指南。2022 年 9 月在纽约举行的第 77 届联大和 2022 年 12 月在华盛顿特区举行的美国-非洲领导人峰会上的高级别接触促进了对 SCD 的认识和伙伴关系。联大会议强调生物医学科学、实施研究和治疗开发方面的伙伴关系,而美非领导人峰会会议则侧重于 SCD 全球伙伴关系:结论:高级别参与促进了跨境对话,强调了从基层到全球联盟的伙伴关系的重要性。主要成果包括提高认识、政策宣传以及建立 SCD 英才中心和基因组学能力建设倡议。可持续的努力需要强有力的伙伴关系、政府参与、社区意识和公平获得先进疗法的机会。
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来源期刊
BMJ Global Health
BMJ Global Health Medicine-Health Policy
CiteScore
11.40
自引率
4.90%
发文量
429
审稿时长
18 weeks
期刊介绍: BMJ Global Health is an online Open Access journal from BMJ that focuses on publishing high-quality peer-reviewed content pertinent to individuals engaged in global health, including policy makers, funders, researchers, clinicians, and frontline healthcare workers. The journal encompasses all facets of global health, with a special emphasis on submissions addressing underfunded areas such as non-communicable diseases (NCDs). It welcomes research across all study phases and designs, from study protocols to phase I trials to meta-analyses, including small or specialized studies. The journal also encourages opinionated discussions on controversial topics.
期刊最新文献
Design, implementation and outcomes of a national oxygen distribution network in Lesotho. Identifying health outcomes and future research directions of group antenatal care among adolescents in low and middle-income countries: a scoping review. Strengthening global partnerships for sustainable sickle cell disease care: insights from SickleInAfrica at the 77th United Nations General Assembly and the US-Africa Leaders' Summit. The 'Health-2-Go' programme's impact on all-cause mortality and clinic utilisation for children 5 and under: a retrospective cohort analysis of an iCCM intervention in Ghana's Barekese Subdistrict. Perioperative outcomes at three rural Rwandan district hospitals: a 28-day prospective observational cohort study.
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