Your Excellency, the First Lady of the Republic of the Congo, Antoinette Sassou Nguesso,
Ministers of Health from the African Region,
United States Assistant Secretary for Health, Admiral Brett Giroir,
Excellencies, ladies and gentlemen:
Welcome to this side event on sickle cell disease.
Je voudrais au nom de l’OMS, et de nous tous dans cette salle, brièvement remercier Madame Antoinette Sassou Nguesso, Première Dame de la République du Congo d’avoir accepté d’être l’invitée d’honneur de cette séance. Madame, je vous félicite et vous remercie également pour toutes les initiatives que vous menez en faveur de la santé, et surtout d’être notre première avocate pour ce qui est du plaidoyer pour la lutte contre la drépanocytose, tant au niveau régional que mondial.
Sickle cell disease affects 120 million people globally and 66% of those affected are living in the African Region.
Nine years ago, in 2010, the Regional Committee endorsed a strategy for sickle cell disease. The strategy set out key public health interventions to reduce the disease burden in African countries.
However, an assessment of the strategy’s implementation in 2018, showed unfortunately, that we have not made much progress in almost 10 years.
At the heart of this issue is a need for stronger national prioritization of sickle cell disease in countries where it is a public health problem. Too often, budgets are not allocated to address this problem. Countries have not gathered up-to-date and comprehensive data on the disease thus are not able to target what they need to do.
This results in inadequate access to treatment and care, including counselling and newborn screening. To improve access, we need to ensure programmes are integrated with the services being delivered to communities. We also need to negotiate with the private sector to ensure affordable access to treatment options.
At the same time, we need better information to be made available – from epidemiological data for planning, to training resources to build the knowledge and skills of health workers, to user-friendly and widely-disseminated health information for communities and the general public to be aware of sickle cell disease.
Furthermore, progress has also been affected by the wide variation across countries in the cost and quality assurance of diagnostic tests.
In relation to therapeutics, Hydroxyurea, an anti-cancer agent, has been shown to be effective in reducing the pain associated with sickle cell disease – but its use in treatment and inclusion in national essential medicines lists remains very limited.
Sickle cell disease can be integrated in primary health care services in at least three key ways:
- First, including newborn screening and early intervention programmes for sickle cell disease, in cases where this is feasible, alongside HIV screening and maternal and child care programmes.
- Second, making training available to health workers to provide people-centred care, based on expert guidance.
- And third, particularly in high-burden countries, offering genetic counselling for this disease.
Sickle cell disease is also preventable. However, the current emphasis is on clinical care in tertiary hospitals rather than access to treatment at the primary care level and prevention in districts and communities.
WHO is committed to working with Member States and partners in these areas to strengthen health systems for management of sickle cell disease. It is our belief that this coincides well with the dynamic that we have now in the Region on universal health care with countries that are decentralizing and increasing coverage of health services.
Our discussions today will focus on the urgent need for integrated and decentralized primary health care services to prevent and control sickle cell disease.
Moving forward from this event, by creating a network for this disease, we can continue to learn from each other and share best practices. I encourage all of us to consider how we can design this network for maximum impact.
Also working together, we have a huge opportunity today to address sickle cell disease in a way that will scale-up to serve communities and save lives.
I would like in addition to thanking Madame Antoinette Sassou Nguesso, to very much thank Admiral Giroir for having reached out to us about this problem, for having agreed to travel to Brazzaville for our side event also as an opportunity to interact with various people, and to say that we very much look forward to working with you.
So again, welcome honourable ministers to this session. I look forward to a very rich, creative discussion. I also look forward to working with you together so that in 10 years when we report on further action it is not what we are saying about the regional strategy that was adopted 10 years go.