Carter Center Slideshow: Kinship Powerful in River Blindness Fight

June 21, 2016

When it comes to eliminating disease, sometimes it’s not only what you know, it’s also who you know.

River blindness is so pervasive in Africa that many global experts have believed it could only be controlled, not eliminated. But Uganda intends to rid itself of the parasite that causes the disease, and it’s using one of its greatest resources to do it: women.

River blindness is an infection that causes intense itching, skin discoloration, rashes, and eye disease that can lead to visual loss and permanent blindness. It is spread by the bites of infected black flies that breed in rushing rivers.

A family walks to a community gathering in Lamwo district, Uganda. Women there have been asked to take charge of ensuring their families receive river blindness treatment. (Photo: The Carter Center/ E. Echwalu)
Christopher Olanya lost his sight to river blindness, but now that his Ugandan community is receiving ongoing treatment, he may be one of the last to do so. (Photo: The Carter Center/ E. Echwalu)
In this photo from several years ago, a community volunteer in Abu Hamad, Sudan, measures a man to determine proper dosage of Mectizan, which prevents and treats river blindness. Today, the area is free from the parasitic disease. (Photo: The Carter Center/ M. Katabarwa)

Uganda’s Family Ties

“Almost every family I know has someone fighting this disease,” said Christine Akello, a river blindness patient in Uganda. She survived decades of civil war in Uganda only to become infected during peacetime.

“What is tough is thinking that you made it through a long, grueling war, that you can rebuild your life, raise your family well and have a little peace, only to be confronted with another war in your very own backyard,” she lamented.

The good news is Akello’s sight is returning after treatment with the medicine Mectizan® , donated by Merck. Twice-yearly doses effectively treat the disease and halt its transmission.

Uganda’s government had been working with The Carter Center since 1996 to educate communities and distribute Mectizan, but the male-dominated volunteer distribution system failed to take advantage of traditional kinship structures and roles, Dr. Moses Katabarwa, the Carter Center’s senior epidemiologist, found.

However, when the program shifted its strategy in 2014, everything changed. The new approach moved away from village health teams—usually men appointed by health workers—to community-selected drug distributors, with an emphasis on selecting women. These drug distributors were asked to make sure everyone within their own extended families received river blindness information and Mectizan. This solved several challenges, including volunteer turnover, social taboos, and program penetration into all households.

In Uganda’s Lamwo district, the proportion of the population covered by Mectizan treatment soared from 36 percent in 2013 to more than 90 percent in 2014. When The Carter Center in August 2014 celebrated its 200 millionth dose of Mectizan worldwide, the ceremony was held in Lamwo.

It is believed that 2.7 million Ugandans are no longer at risk for contracting this disease, and that transmission of river blindness has been halted in 15 of Uganda’s original 17 focus areas. With the Carter Center’s help, the country hopes to eliminate river blindness from within its borders once and for all by 2020.

The kinship approach has since been adopted by the Ugandan government as national health policy and has boosted other programs such as malaria control and reduction of infant mortality.

Success in Sudan

The isolated endemic community of Abu Hamad in northern Sudan was declared free of river blindness after implementing a similar kinship approach.

Abu Hamad stopped transmission of the disease in 2012 and hasn’t had a case since. The program relied on local volunteers — particularly women — to educate their own communities and see that each family member received a dose of Mectizan every six months.

“Overcoming river blindness in Abu Hamad is a historic achievement that all Sudanese can celebrate,” said Alkhair Alnour Almubarek, minister of health in Sudan’s Federal state. “I hope this success will further inspire us to do more, and encourage our African neighbors to tackle river blindness elimination.”

Dr. Frank O. Richards, director of the Carter Center’s River Blindness Elimination Program, said Sudan’s decision to try to eliminate the disease rather than just control it made all the difference.

“Once elimination becomes the goal, it is no longer business as usual,” he said. “A program and its partners must ratchet up interventions, and that’s exactly what Sudan did in Abu Hamad.”