Tackling sickle cell disease

CTI Foundation launches in Uganda

Kampala, Uganda | PATRICIA AKANKWATSA | In a stride towards combating sickle cell disease (SCD) in Uganda, the CTI Foundation on May 23 made its debut in the country, bringing renewed hope for individuals affected by this hereditary blood disorder.

Speaking about the launch, CTI Global CEO, Dr. Michelle Barry, said it is disheartening to witness the continued existence of this debilitating condition, especially when knowledge and tools to combat it effectively exist.

“Sickle cell disease not only inflict immense suffering on individuals and families but also places an enormous burden on societies and healthcare systems. Its effects are felt across the globe, with millions of people enduring excruciating pain, life-threatening complications, and a significantly reduced quality of life. Moreover, the economic impact of sickle cell disease is staggering, hindering productivity and perpetuating cycles of poverty in affected regions,” she said.

“It is our moral obligation to address this unnecessary disease head-on, as no one should be condemned to a life of pain and hardship due to their genetic makeup. However, eradicating sickle cell disease requires a multifaceted approach, and one of the critical pillars is ensuring access to simple trait testing, especially in low-income and underserved communities,” she added.

Barry said by identifying individuals who carry the sickle cell trait, they can be proactively educated about the potential risks and provided with appropriate counselling regarding family planning options. Early intervention and informed decision-making empower individuals to make choices that can prevent the transmission of this disease to future generations.

Sickle cell disease (SCD) is a genetic blood disorder characterised by the presence of abnormal haemoglobin in red blood cells, leading to a range of complications and health challenges

According to the World Health Organisation (WHO), it is estimated that around 15% of the Uganda population carries the sickle cell trait, and about 20,000 babies are born with SCD annually in the country.

One of the challenges in tackling SCD in Uganda is the lack of widespread access to diagnostic services. Many individuals with the disease go undiagnosed or receive a late diagnosis, resulting in delayed or inadequate treatment. Limited resources and infrastructure contribute to the diagnostic gap, especially in rural areas.

Speaking at the World Health Assembly on May 25, where she launched the World Coalition on Sickle Cell Disease, the Minister of Health, Dr Ruth Aceng urged countries to allocate domestic resources to support the response of SCD.

“Many countries don’t have Hydroxyurea on their essential medicines list. I want to urge many of you to include it. The government of Uganda procures Hydroxyurea every quarter and is part of the Essential Medicines List,” she said.

She also urged partners and countries to invest in research for knowledge of affordable technologies, and pharmaceutical groups to use simpler and affordable drugs as well as develop simple and accurate diagnostic tools.

Isaac Okello, the Executive Director of Raising Hope International Friends (RHIF) – Sickle Cell Advocacy Organisation, said they were proud to announce the launch of CTI Foundation and to take a stand against Sickle Cell Disease.

“This debilitating condition affects millions of individuals and families worldwide, imposing significant challenges on their daily lives. With the establishment of the CTI Foundation, we are taking a crucial step forward in the fight against SCD, aiming to improve the lives of those affected and create a lasting impact on a global scale,” he said.

Okello said CTI Foundation embodies this belief, as it seeks to empower communities, foster groundbreaking research, and raise awareness about Sickle Cell Disease.

“By joining forces with experts, advocates, and affected individuals, we can make a real difference in preventing this condition. Let us stand united in our mission to eradicate sickle cell disease. Together, we can bring about a world where sickle cell disease is nothing but a distant memory, and future generations are free from its grip,” he said.

He added that the lack of access to trait testing has disproportionately affected disadvantaged communities, exacerbated health inequities and perpetuating the cycle of disease.

“This injustice cannot be tolerated any longer. We must work to remove the barriers that hinder access to simple trait testing, such as cost, geographical limitations, and limited healthcare infrastructure. Collaborations with healthcare providers, governments, non-profit organisations, and research institutions are crucial in expanding screening programs, ensuring affordability, and raising awareness about the importance of testing,”

“By eradicating sickle cell disease, we not only alleviate human suffering but also create a more just and equitable society. No individual should be denied the chance to lead a healthy life due to the circumstances of their birth. We will tirelessly strive to mobilize support, raise awareness, and work collaboratively to eliminate this unnecessary disease,” said Barry.

The CTI Foundation aims to foster research and innovation within Uganda’s healthcare landscape to enhance understanding, treatment, and management of SCD. By promoting partnerships with local research institutions and supporting pioneering studies, the foundation seeks to advance scientific knowledge and develop novel approaches to tackle SCD.

The launch also opens doors for collaboration with local healthcare institutions, government agencies, and community organisations. By fostering partnerships, sharing expertise, and leveraging resources, the foundation aims to create a sustainable and coordinated approach to addressing SCD in Uganda.