The way forward is clear. We don’t need scientific discoveries, or medical miracles – we just need to organize and implement. And I want to be clear – I am not suggested an independent silo’ d program. SCD must be integrated into primary care – because it is primary care – with the majority of interventions delivered in primary care Settings.
As Prepared for Delivery
I want to first thank the Initiative for Global Development for their history of building partnerships for economic and societal impact, and especially for your generous invitation for me to represent the United States at this event.
I would also like to express my highest respect to their Excellences, the First Ladies, and to the honorable ministers in attendance for their commitment to improving the lives of those living with Sickle Cell Disease, and their spirit of collaboration - with me - and the United States - on this nascent, but rapidly maturing, global initiative.
As the Assistant Secretary for Health, I am the principal public health official in the United States, and lead over 6300 uniformed, unarmed, health professionals who comprise the US Public Health Service Commissioned Corp. But I am also a pediatric intensive care specialist, and have cared for hundreds of critically ill children with sickle cell.
I have been at many bedsides, for hours and even days at a time, performing exchange transfusions, providing respiratory support, and caring for families who are so distraught for their loved ones.
When I started my practice, there was no newborn screening for Sickle Cell in the United States. Children frequently presented to me near death, with critical infections or severe anemia.
Today, although there is universal newborn screening in the United States, care for patients is still far from optimum or even acceptable in many areas.
So eighteen months ago, I formed a United States interagency task force with the goal to normalize the life expectancy for Americans with Sickle Cell disease within 10 years. In support of our initiative, President Trump delivered the first Presidential message on Sickle Cell disease since 1983, indicating our national commitment to improving the lives of patients and striving for a widely available cure.
We are increasing funding for research, expanding our national data bases, implementing new educational campaigns for clinicians and patients, and modernizing reimbursement to assure holistic and available care for patients with Sickle Cell. And there will be a widely available cure, within 10 years as Francis Collins tells me, that does not rely on bone marrow ablation or conditioning prior to curative therapy.
So I am here to join hands with you, in a multisector, multidisciplinary effort to save hundreds of thousands of children’s lives each year, and improve the quality and longevity of life for patients with sickle cell disease in both in Africa, and in America.
Although there have been discussion for decades, we started this initiative at the US hosted roundtable at the World Health Assembly last May, and then built upon that effort at an official side event at WHO-AFRO in Brazzaville, chaired by her Excellency First Lady Antoinette Sassou Nguesso.
During my visit to the Republic of the Congo, I had the opportunity to visit their impressive national sickle cell treatment center as well as the Congolese national laboratories – that was the start of a very real and tangible collaboration.
Today is another important step.
The issues in Africa are clear. They were highlighted in WHO reports, strategies, and resolutions beginning in 2005. Sadly however, the recent Report on the Assessment of the Implementation of Sickle Cell Disease Programs in WHO African Regions stated that:
“Progress in the implementation of the AFRO strategy … has been slow due to poor budgetary allocation to … prevention and management with a failure at the policy level.”
But I am optimistic, because the map for our journey is well defined, and there are many proven pilot programs and partnerships that can be expanded and scaled to national levels.
So I am here to commit United States support – and my personal commitment – to stop talking, and start DOING.
USAID, the NIH, and my office – the Office of the Assistant Secretary for Health - are now working together to identify US resources – both financial and technical - that can be devoted to efforts in Africa.
We are also engaging external partners, like the American Society of Hematology, Novartis, Global Blood Therapeutics, and of course the WHO. And just last week, my team including USAID had an excellent meeting Dr. Muhammed Ali Pate and other senior leaders at the World Bank; and the World Bank just today published an excellent blog on Sickle Cell Disease in Africa.
The way forward is clear. We don’t need scientific discoveries, or medical miracles – we just need to organize and implement. And I want to be clear – I am not suggested an independent silo’ d program. SCD must be integrated into primary care – because it is primary care – with the majority of interventions delivered in primary care settings.
- We must understand the burden of disease in our countries. In this regard, I urge that all countries request, as Nigeria has just done, that the Demographic and Health Survey include a survey of Sickle Cell Disease so that we have reliable and actionable information at the national level.
- We must universally screen newborns and/or young infants for Sickle Cell Disease either through blood spot screening of newborns, or point of care screening of infants at the time of vaccinations. Each country should choose what is right for it, and determine what it would take – financially, logistically, and with what training and technical assistance - to develop a national program.
- Each child identified with Sickle Cell Disease should receive the interventions outlined in the American Society of Hematology consortium protocol, to include: PCN prophylaxis, folic acid supplementation, pneumococcal and HiB vaccinations, and routine follow up visits. Each country should determine how to implement this, and the barriers to national scale up.
- The NIH sponsored REACH study proved that Hydroxyurea, a universally recommended standard of care treatment in the United States, is safe and highly effective in Sub Saharan Africa. I understand that the costs are too high. The United States will work with you to build a coalition and negotiate a price that will make this drug accessible to all.
- Other priorities for care, including alleviation of pain, transfusions, and in the future when and where possible, stroke prevention and new treatments now in the pipeline.
I believe that what we are doing is NOT just a new initiative, but the beginning of an international movement that will save millions of lives, reduce stigma, and truly implement what it means to have Universal Health Coverage through Primary Health Care. I look forward to working with you, and learning from you.
Thank you again for the opportunity to spend this time with you.