Every year, around 300,000 children in sub-Saharan Africa are born with Sickle Cell Disease, caused by an ancient mutation in one of the genes governing the development of hemoglobin. The disease causes extreme pain, organ, and immune system damage.
“That damage to the immune system happens very, very early. So children who don't get appropriate care can die of bacterial infections very rapidly,” explains Brett Giroir, a pediatric doctor and Admiral in the United States Public Health Service who currently serves as the Assistant Secretary for Health at the U.S. Department of Health and Human Services. Indeed, in low- and middle-income countries, an estimated 80 percent of children with Sickle Cell Disease die before the age of 5.
Because Sickle Cell Disease is the most common -genetic disorder among African Americans, “the United States …has really taken bold leadership in bringing sickle cell disease to the forefront,” said Admiral Giroir.
Internationally, the United States is working with countries like Uganda, which has just published a national plan to deal with Sickle Cell Disease. “The Ugandan plan, I think, is really a landmark,” said Admiral Giroir:
“It's a specific plan. It's fully costed. It's done chronologically. So, we know what needs to be done when. So, it's a really robust plan that can serve as an example for the rest of the continent.”
It’s important to note that this plan was made by the nation of Uganda for the people of Uganda,said Admiral Giroir.
“What Uganda did is it did a survey to understand even within a country, there are many regions where sickle cell is much more common than other places. And these are sort of the accidents of genetics with…with who lives in those areas and how it developed over a period of time. So, this is a targeted plan. So it starts where the places that have the worst effects of sickle cell are. So, there are about 75 health districts that they're going to focus on first and then expand it.”
Uganda has agreed to allow its plan to be disseminated throughout Africa. It will need to be adapted to the people, to the culture and economic situation of each country, but that can easily happen, said Admiral Giroir.“The first step is to have a plan. The second step is to really execute that plan. But we are in a really great position to make the plan and to execute it.”