Going the last mile to eliminate a long-neglected disease: sleeping sickness

February 15, 2018 by Carolyn Reynolds

Minister of health Dr. Oly Ilunga pays a visit to Bangumi village in DRC’s Kwilu Province. To the villagers’ recollection, he is the first minister to ever visit the remote settlement. Photo: PATH/Carolyn Reynolds.

Minister of health Dr. Oly Ilunga pays a visit to Bangumi village in DRC’s Kwilu Province. To the villagers’ recollection, he is the first minister to ever visit the remote settlement. Photo: PATH/Carolyn Reynolds.

The Democratic Republic of the Congo’s fight to do away with sleeping sickness is picking up speed, with help from PATH, partners, and a dedicated minister of health.

The villagers lined the roads in anticipation and excitement. And then he came, with his entourage in tow. The children sang, the women danced, the band played, and the crowd cheered.

But it wasn’t a football star, or a rock star, not even the president they were celebrating. It was the minister of health.

In late January, Dr. Oly Ilunga Kalenga, minister of health for the Democratic Republic of the Congo (DRC), visited Bangumi, a remote settlement about one-and-a-half hour’s drive on a rough dirt road from Bandundu-ville, the capital of Kwilu Province. He came to see the mobile medic team deployed to test for cases of Human African Trypsomiasis (HAT), more commonly known as sleeping sickness. Transmitted by the tsetse fly, HAT is a debilitating disease that can turn deadly if not treated, and an estimated 80 percent of the world’s remaining cases are in the DRC.

For the minister of health to travel to see what his ministry is doing doesn’t sound so unusual—except that he is the first national minister of health ever to come to this area. It is remarkable that Minister Ilunga is the first minister, period, to visit in anyone’s memory, and that his visit was to evaluate interventions for sleeping sickness, a so-called neglected tropical disease (NTD) that many people thought had vanished long ago.

First Annual National HAT Day

The previous day in Kinshasa, Minister Ilunga had joined the DRC prime minister and more than 150 government officials, diplomats, health experts, and international partners, including PATH, to declare January 30 the first National HAT Day in the DRC. The aim of National HAT Day—which will be marked annually—is to track progress and gain political will in the drive toward HAT elimination.

Speaking to the importance of government support in elimination efforts, Minister Ilunga said: “Carrying the heaviest burden of HAT cases, the government realized very early on that it needed to take the lead in the fight against this disease that only affects countries sub-Saharan Africa. We see our efforts to eliminate this disease and many others as the DRC’s contribution to making our world a better and healthier place to live in.”

Advocacy efforts to drive HAT elimination

Through a partnership with the Bill & Melinda Gates Foundation, Belgian Institute for Tropical Medicine, Drugs for Neglected Diseases Initiative (DNDi), and Liverpool School of Tropical Medicine, PATH is partnering with the DRC ministry of health to accelerate progress toward elimination of HAT, including expanding screening, treatment, and vector control in the remaining high-transmission areas like Kwilu Province. The work also includes clinical trials led by DNDi of 75 patients at the provincial hospital.

Advocacy efforts like HAT National Day are key elements in the effort toward elimination.

This day is about accountability—of the government, and of all the international partners involved, including PATH,” said Trad Hatton, PATH’s DRC country director. “As we mark this national day each year, it will serve as a moment to not only reflect on progress, but also to take stock of our remaining challenges and to redouble our efforts. Not so long ago, we saw dramatic reductions in HAT in the DRC, but then we took our eye off the ball and turned our attention to other priorities, only to see the disease came roaring back with a vengeance. We must not make that mistake again.”

Untitled

Thirteen mobile medic teams are deployed across Kwilu and neighboring provinces with the goal of testing three million people for HAT over three years. Photo: PATH/Carolyn Reynolds.

Mobile medic teams for HAT screening

By the time Minister Ilunga arrived in Bangumi, Meli Medise and his eight-member mobile medic team had been hard at work at their makeshift outdoor clinic in the oppressive heat for nine hours, registering and screening a seemingly endless line of people for the antibodies that may indicate HAT infection. He highlighted the challenging conditions in which they work, noting that canoes are often used to reach families inaccessible by road, and prime de risqueé (hardship pay) is needed to keep workers motivated.

Yet Medise and his team continues to see patient after patient, drawing blood samples. Once a slide is filled with six samples, Meli places it in the CATT Rotator machine for the initial screening. With no electricity in the village, the machine is powered by a car battery hooked up to a solar panel.

Untitled

Belinda (18) nervously awaits the results of her HAT screening by the mobile medic team. Photo: PATH/Carolyn Reynolds.

The screening process is mostly noneventful. That is, until it isn’t. For 18 year-old Belinda, her initial test for comes back positive for HAT. Medise sends her a few meters away to the second screening station where another mobile medic team member takes her blood sample and does capillary tube centrifugation, the process of separating blood from plasma. Meanwhile, Belinda shifts nervously in her chair, and the crowd around her is hushed. If this test comes back positive, they know Belinda will be taken immediately for a lumbar injection to see whether the infection has broken the blood-brain barrier, which would determine her course of treatment and prospects for recovery.

The medic team members stare at the slide for what seems like an eternity. But this time the result is negative, and Belinda cracks a smile of relief.

However, there’s one more test to make sure. Happily, the result is once again negative. Belinda is told she can go home, but that she must come back within three months to be checked again, sooner if she develops any symptoms of fever, headaches, joint pains, or itching—all initial signs of HAT.

Untitled

Mobile medic team members often endure long hours in challenging conditions to ensure villages in some of the most remote areas of the DRC are regularly tested for HAT. Photo: PATH/Carolyn Reynolds.

Next steps in HAT elimination

With fewer than 2,200 reported cases currently—down from 40,000 in 1998—HAT is only one of the many health problems affecting the Congolese people. HIV, for example, affected more than 370,000 people throughout the country in 2016.

So, given the seemingly low number of cases and limited budget for public health, why focus precious time and resources fighting HAT?

“We are taking this ‘vertical’ push to eliminate one disease to a place where we are also making a push to strengthen the entire primary health care system. As we get closer and closer to the last HAT case, we will increasingly need to depend on a stronger system to get us to elimination, with surveillance as part of the basic health package,” Minister Ilunga explains. “So, the HAT elimination program is a great example to show that it is possible to bring quality care and science to the last mile.”

Minister Ilunga adds: “Sleeping sickness is a symbol of the diseases of the colonial era. The first time I learned about this disease was when I was a young boy in school in Kisangani. When I became minister, I wasn’t thinking much about it,” Ilunga said. “But then PATH came to see me about the idea for HAT Day, and Dr. Miaka (national HAT program director) said they needed help to drive momentum on this. I saw the potential. We have the partners, we have the solutions, and now we also have the momentum.”

Before the minister flew back to Kinshasa, he made one last stop: to rally the local ministry of health officials around the effort. “We are engaged in a revolution in health here in the Congo, and we must all be part of this revolution,” he said.

HAT is one of the NTDs included in the London Declaration on Neglected Tropical Diseases, a commitment made in 2012 by pharmaceutical companies, donors, endemic countries, and nongovernmental organizations to control, eliminate, or eradicate 10 diseases by 2020.

Read the press release about the government’s commitment and international partner support to eliminate HAT in the DRC.