Sickle Cell Disease Webinar for Permanent and Observer Missions to the United Nations to mark World Sickle Cell Awareness Day | WHO

Opening Remarks by WHO Regional Director for Africa, Dr Matshidiso Moeti

Excellencies,

Ladies and gentlemen,

Thank you for joining us today to commemorate World Sickle Cell Day. 

While this disease is a devastating life-long health issue that primarily affects people of African descent and the Middle East, the burden is rising globally.

About 23 high-burden countries in West and Central Africa have a sickle cell trait prevalence rate between 20% and 30%. 

There have been attempts at the global level to address this problem . The WHO African Region has led regional resolutions taken by health ministers of our Member States, demonstrating their commitment. 

However, the investment and actions to implement these strategies in countries have yet to meet with this commitment. 

Access to essential sickle cell services remains low; the cost of effective treatments is beyond the means of patients. 

Global platforms have been established through funding agencies, like the World Bank, UN agencies, and other regional institutions. 

In 2015, as I was elected Regional Director, an individual initiative was driven by an American who adopted an affected African child. However, such initiatives die when individuals move on to other endeavours. 

I see an urgent need to build more sustainable partnerships, making connections among the separate and fragmented actors—such as the World Coalition on Sickle Cell Disease – formerly led by the World Bank – the Global Sickle Cell Disease Network, and the Sickle Cell Disease Coalition to aggressively go beyond raising awareness and working in silo, to mobilizing the needed resources seriously. 

I also see the need to reach out to other partners from the governments of affected countries, researchers, policymakers, and technical assistance providers to support countries in mobilizing resources and taking adequate action.

So, concretely, what can we do to make faster progress? 

First, we must expand access to feasible and currently affordable services, such as diagnostics and treatment. 

Hydroxyurea has been deployed in 11 countries, but access remains limited.

Critically, leveraging the availability of hydroxyurea now manufactured in Nigeria (by Bond Chemicals Manufacturing Industries) and organizing a market with national investment and international funding will enable access to millions of patients. 

This is an urgent priority for some children, families, and communities. 

Second, access to sickle cell disease services requires careful local and district planning before expanding into national plans, with predictable resources available at the right time. 

Sickle Cell Disease services should be integrated into essential health benefits packages of child health programs at primary health care levels, and included in universal health coverage.

Third, we must implement and document successes to serve as strong advocacy tools for governments (local and central) of affected countries, involving the academia, private sector, and diaspora, demonstrating that change is possible. 

Finally, we must start planning for access to the more costly treatment options, such as bone marrow transplant and gene therapy. 

As WHO African Region, we commit to – 

Paying more attention to the most affected countries; 

Ensuring better guidance and capacity building for bone marrow transplants and gene therapy; 

And increasing the availability of health products, sustaining advocacy and communication, and monitoring grassroots and national implementations. 

Thank you very much.