Meet The Women Tackling Uganda’s Sickle Cell Problem With SmartPhones
In a country where the female literacy rate is 65 percent, AfriGal Tech is helping cure one of the region’s deadliest childhood diseases.
Bonita Nanziri begins each day at 5 a.m. with prayer and meditation.
She’s up early to be out the door by 7 a.m., starting the two-hour commute to her 9 a.m. health technology class. Public transportation takes her into the heart of Uganda’s bustling capital city of Kampala, where she is a student at Makerere University, one of the country’s oldest and most prestigious schools.
Nanziri’s dogged pursuit of a college degree in software engineering stands out in a country where the female literacy rate is 65 percent. But it is her work to curb childhood deaths from sickle cell disease that has captured the attention of medical and technology experts in the United States.
Nanziri, 24, leads a team of four women that has developed a low-cost diagnostic tool that detects sickle cell disease using only a SmartPhone app and a small, external lens that fits onto the phone’s camera. It is an alternative sorely needed in a country that lacks the funding or equipment to test for the painful disease that kills thousands each year.
“Many people do not have access to these testing services,” Nanziri says, noting that there is only one hospital in the entire country, Mulago Hospital, that tests for sickle cell disease.
“The equipment is either expensive or requires electricity to be operated, which is not available in the rural areas,” she adds. “So we thought, why not develop an application that would be used by any trained health worker from any health center.”
The pervasiveness of sickle cell disease in Uganda is among the highest in the world. The Sickle Cell Association of Uganda estimates that 33,000 babies will be born with sickle cell disease each year. Of those, 80 percent will die by their fifth birthday.
Sickle cell disease is a group of inherited blood disorders that causes abnormal hemoglobin, the protein in red blood cells that carries oxygen to the body. Named for the C-shaped look that the damaged red blood cells take on, the disease causes chronic widespread pain as the sickle-shaped cells clog blood flow and restrict oxygen. Untreated, the disease can lead to stroke, anemia and damage to the heart, lungs and kidneys.
In the U.S., about 100,000 people been diagnosed with sickle cell disease. Treatments including oral medication and better management of symptoms have raised the life expectancy to between 40 and 60 years old.
But in central and west Africa, which has the highest concentration of sickle cell disease, lack of education and access to treatment means the majority die from related infections or severe anemia.
“Very many people do not know about the disease, how it is got, how to manage it so that they can live longer or even how to find out that they have it,” says Rachel Aitaru, who works with Nanziri. “It is very painful to suffer from a disease when it could have been managed had you found out earlier.”
Choosing the name AfriGal Tech for their team, the four college students – Nanziri, Aitaru, Rebecca Arono and Beatrice Nasike – developed the software for the diagnostic tool, called mDex.
It works by using the lens attached to the camera to analyze a drop of the patient’s blood for the sickle cell trait. The medical personnel using mDex mixes a drop of blood with sodium metabisulfite, a solution that will deoxygenate the blood and cause the red blood cells to sickle in patients that have the trait.
The accompanying app allows the medical worker to input the patient’s name, age, contact information and district – the latter two which allow for follow-up care and statistical gathering – before snapping a picture of the blood on the slide. The app then analyzes the blood in seconds, providing a negative or positive diagnosis.
AfriGal’s mission to spread awareness about sickle cell disease is personal.
“In 2013, we lost a friend in his final year at medical school to sickle cell anemia,” Nanziri explains. “He was brilliant and passionate about helping people living with sickle cell. This prompted us to come up with a solution using technology despite the fact that we do not have a medical background.”
The team’s mentor advised them to contact Microsoft YouthSpark, a global computer science program that provides resources and entrepreneurial support, especially to those in under-represented areas. In 2014 AfriGal won YouthSpark’s Imagine Cup semi-finals in Uganda in the World Citizenship Competition category, winning $1,000 and a trip to Seattle for Imagine Cup’s world finals, where they placed as finalists.
AfriGal is continuing to work on the software and technology with Microsoft’s support. They plan to release a beta version of mDex early next year, but are already receiving praise from the medical community.
“I think what these women are doing is fabulous,” says Dr. Kim Smith-Whitley, medical director of the Sickle Cell Clinical Program at the Children’s Hospital of Philadelphia. “The use of a SmartPhone is brilliant.”
Smith-Whitley, who has devoted her career to increasing survival with sickle cell disease, says she would like to see AfriGal’s software partnered with an existing health program that already goes into the rural areas to test for diseases like malaria or HIV to increase the number of people who are tested for sickle cell trait.
“They’ve done their research and they’ve done a good job with it,” she says. “I hope they are able to sustain interest and find healthcare partners that are willing to make this reach its real full potential.”
Smith-Whitley also applauded the women of AfriGal for succeeding in a country, and an industry, largely dominated by men.
The women, humble about their accomplishments, recognize the power they have in their community.
“In our field, women have to work a little harder to prove that they are actually smarter than their male counterparts,” Nanziri says. “One of the things we are doing as emerging women in tech is our best to become role models that young girls and aspiring women in tech can look up to and feel encouraged.”
“You’ve got to be aggressive enough,” Aitaru agrees, “otherwise people might take you for granted.”
And they have their eyes set beyond the borders of Uganda.
“We would like to travel to areas heavily affected by sickle cell like Nigeria and Saudi Arabia,” Nanziri says, “to create awareness and train people on using mDex to save lives.”
Sarah Netter is a freelance journalist who lives in New Orleans with her young son and neurotic dogs. Her work has been published by ABC News, The New York Times and Yahoo.