Hundreds of Ebola survivors began losing their sight in Sierra Leone in 2015. Why was it so hard for us to see they needed help?
Posted on Jan 9, 2017
When the number of new Ebola cases finally began to level off in Sierra Leone in early 2015, nurse John Welch, a Partners In Health clinical director in the northern Port Loko District, went to investigate some of the health complaints he was hearing from Ebola survivors. Many of the farmers and street vendors and others that PIH had discharged from its Ebola treatment unit were sounding less than cured. Welch had sent them back into the world after a final chlorine spray dubbed the “happy shower,” but now they were describing everything from joint pain to depression.
Uveitis raised particular alarms. Pronounced “yew-vee-eye-tis,” it is an inflammation of the eye caused by infection, injury, or autoimmune response. As the eye swells, it can bleed or change color, and vision deteriorates. One patient described “looking through brambles.” Untreated, the retina and optic nerve wind up permanently damaged, and, within a year, a person can go blind.
To Welch’s good fortune, one of Sierra Leone’s four ophthalmologists, Dr. John Mattia, happened to work just down the road from PIH’s Ebola treatment unit. But he painted a grim picture of the situation.
Systemic diseases such as Ebola rarely if ever produce uveitis in more than 3 percent of patients, but around the country, eye care specialists were seeing it much more often. And they had few to none of the steroid eye drops and tablets known to treat the disease. “I thought of uveitis as a death sentence for the eye,” Mattia recalls.
So in the cities of Kenema and Freetown, Bo and Makeni, Ebola survivors with uveitis were doing for themselves as best they could, buying saline eye drops or rubbing hand sanitizer in their eyes.
Their understandings of the cause of their failing eye sight was equally crude but logical. Many thought the bizarre eye problems were the result of whatever Westerners had fed them while they had been incapacitated in Ebola treatment units, or maybe all that stinging chlorine was to blame.
After talking with Mattia, Welch and colleagues became convinced they had to do something. They could hardly imagine the challenges to come—the donors who would show them empty pockets, the nongovernmental organizations that would shrug off requests for help, the international newspapers that would downplay the prevalence of uveitis. Nor did they fully appreciate the struggles that Mattia and his colleagues had already faced.
All they really knew was that they couldn’t stand idly by. “If our patients survive Ebola and end up debilitated from uveitis, then it’s pointless to say ‘We’ve won,’” Welch thought.
Ebola survivor and PIH employee Unisa A. Bangura (left) helped Kadiatu Bangura (right, no relation) treat her eye problems. Photo by Rebecca E. Rollins / Partners In Health
Sierra Leone is a poor country roughly the size and population of South Carolina. Even in the relatively good years before Ebola struck, the government could afford to spend just $86 on health care per person per year. This led to dismal results. Surgery outcomes in the top Sierra Leonean hospitals, for example, were on par with hospitals in America in the 1860s.
Eye care was a notable standout. Starting in 2011, Dr. Matthew Jusu Vandy, the senior eye specialist with the country’s Ministry of Health and Sanitation, had managed to grow his small program. Cutting a dignified figure in muted button-downs, the graduate of the London School of Hygiene and Tropical Medicine deftly expanded his budget, funded one third by the government and two thirds by nongovernmental organizations. He increased the number of ophthalmologists from one, himself, to four. (Mattia was his first hire.) And he added roughly a dozen cataract surgeons and nurses. By 2014, at least some eye care existed in each of Sierra Leone’s 14 districts.
Then the largest Ebola epidemic in history hit. Beginning in the summer of 2014, Sierra Leoneans saw their neighbors die in hospitals and avoided the places at all costs. Doctors and nurses died from infection or, fearing for their lives, stopped showing up to work. Pharmacies stocked out of the few medications they once had.
“There was nothing,” recalls Vandy.
After ignoring the virus’s spread through Guinea, Liberia, and Sierra Leone, the rest of the world took note in the fall, when the number of people infected with the hemorrhagic fever began to rise exponentially. “CDC: Ebola Could Infect 1.4 Million in Liberia and Sierra Leone by End of January,” warned a U.S. newspaper headline in September.
Rich countries finally shifted into gear. One and a half billion dollars in aid headed toward Ebola treatment units.
The clinic in Port Loko District, Sierra Leone, where Dr. John Mattia treated many Ebola survivors and led a groundbreaking study of the secondary diseases spurred by Ebola. Photo by Rebecca E. Rollins / Partners In Health
And that’s when uveitis began to present—in the earliest wave of fathers and daughters and aunts and others to survive.
Vandy’s cataract surgeon in the eastern district of Kenema, Ernest Challey, seems to have been the first to diagnose Ebola-associated uveitis in West Africa, in October of 2014, and he reported it to Vandy.
Vandy didn’t know exactly why or how Ebola had spurred the condition, but he definitely knew what they were facing.
“Uveitis is not a new disease,” he says.
Patients with moderate symptoms normally get strong eye drops. Those with severe symptoms also take oral steroids, such as prednisone. Beginning with roughly 12 tablets daily, they must gradually reduce the dose over weeks. Abandoning treatment leaves the body with a severe hormonal imbalance that can be fatal. Even administered correctly, the medication can cause flare-ups of diseases such as tuberculosis. And uveitis can recur.
Of course those concerns were a long way off in the fall. Vandy and his colleagues didn't even have enough medication.
“This was a most challenging time for me,” he says.
After watching powerlessly as uveitis blinded two 5-year-olds, Vandy went on a mission. He traveled the country for weeks talking to anyone who would listen, from heads of international NGOs to government officials, asking for staff and supplies.
His pleas fell on deaf ears. In the fall of 2014, the UN was airlifting ambulances and mortuary trucks into Sierra Leone. Experts from around the world were helping dig mass graves and trying to cure Ebola patients. Whether or not those patients ended up blind was largely beside the point. International aid, late to arrive, was focused on slowing the spread of the epidemic.
A tool to examine patients' eyes. Photo by Rebecca E. Rollins / Partners In Health
Thousands of people continued to be infected with Ebola each month until the new year, when the treatment units and infection control efforts finally began to slow the epidemic.
In February 2015, Welch went to investigate the “clinical sequelae” in Port Loko and vowed to help.
PIH was uniquely positioned to respond. They knew and worked alongside many Ebola survivors, having discharged roughly one out of every twenty in the country. And they were friendly with the two other international NGOs in the district, which wasn’t guaranteed, as NGOs were beginning to stake out new turf in the space left by the receding epidemic.
In short order, International Medical Corps, a U.S.-based NGO focused on emergency medical care; GOAL, an Ireland-based NGO focused on extreme poverty; and PIH joined forces.
“At a time when higher levels of management were vying for money and influence, at the field level we came together, all three of us, and provided different parts of the necessary resources,” says Welch.
Within a month, Vandy, Mattia, and The Big 3, as the NGOs jokingly called themselves, cobbled together the Port Loko Ebola Virus Disease Survivor Care Clinic.
Ebola survivors spread the word throughout the district and helped people overcome fears of chlorine and Westerners, and in just April and the first week of May, the Clinic screened 277 survivors. It had to refer some patients, such as those suffering from extrapulmonary tuberculosis, but Mattia, clocking long hours, personally treated any who had eye problems, including 50 with uveitis.
“I didn’t want to let my people down,” he says.
Crucially, the Clinic also tracked patient demographics and diagnosis. Over the coming months, that information would become the first-ever study of Ebola survivors published in a leading medical journal, “Early clinical sequelae of Ebola virus disease in Sierra Leone: a cross-sectional study.”
But even in May, the conclusions were clear. Not 3 percent, but fully 18 percent of Ebola survivors had uveitis.
Alpha Jalloh (center and below) tested Ebola survivors' vision in Port Loko District, Sierra Leone. Photo by Rebecca E. Rollins / Partners In Health
Eye problems appeared in vastly more Ebola survivors than previously imagined. Photo by Rebecca E. Rollins / Partners In Health
Back of the napkin estimates suggested the disease was poised to blind 1,000 people in Sierra Leone. The team felt passionately that the eye care program needed to expand to help all Ebola survivors in the country, and, not unlike Vandy earlier, they set out to find allies and money to do so.
It didn’t go well. Even with the Ebola epidemic shrinking and proof that uveitis was widespread and a pop-up clinic could treat it, PIH nurse Joyce Chang, who took over from Welch, struggled.
“The feedback we got was this is not an Ebola response,” says Chang.
Governments and foundations understood that uveitis was the result of Ebola. But their strict funding rules, established long ago and far away, tended to define activities outside of a treatment unit’s plastic fence as “rebuilding” or “recovering,” which came with a smaller, harder-to-access pot of money.
NGOs balked as well. It wasn’t part of their plan, or they were packing up, moving on to other crises. Others simply weren’t eager to collaborate. There was the “sad but real feeling,” says Piero Pertile, a PIH project manager, that some NGOs didn’t want to prevent blindness if they would have to share credit for the work.
The media didn’t exactly swing the needle, either. The New York Times, for example, published a riveting story about uveitis on the front page, above the fold, in early May. A spooky pair of eyes—one blue, the other green and dilated—stared out at readers. But the piece focused on the frightening medical mysteries of uveitis in a single American and only nodded at “anecdotal and unconfirmed” accounts of West Africans going blind.
When PIH Chief Medical Officer Dr. Joia Mukherjee visited Sierra Leone in late April 2015, the project was in danger. Meager funding, conflicting agendas, shrugging disregard—all threatened to undo months of progress toward a national eye care program. A stall-out would hardly be unprecedented. Time and again, valiant global health efforts have amounted to half-measures. Water wells have been drilled without any way to maintain them. Free immunizations have been offered at health centers too remote for people to reach. HIV treatment programs have ignored infected children.
Mukherjee would have none of it. Someone needed to short-circuit the system, to fully bridge the gap between the powerless and the powerful, so that treatment for uveitis could be given to everyone who was sick.
“I went rather ballistic,” she says.
At 8 p.m. on April 30, she sat down at her computer and launched a fusillade. She emailed everyone from PIH CEO Dr. Gary Gottlieb to the Chief of Ophthalmology at Massachusetts General Hospital, in Boston.
At 9:13 p.m., she shut her laptop and declared a national eye care program under way.
Yealie Mansaray (right) examined dozens of Ebola survivors in Port Loko District, Sierra Leone. Photo by Rebecca E. Rollins / Partners In Health
On May 22, the team ordered $292,000 worth of supplies, and in late June, DHL, the only shipper delivering to West Africa during the Ebola epidemic, delivered 500 pounds of steroid tablets, eye droplets, and ophthalmic instruments to the PIH office in Freetown.
With medication and supplies to hand out, Chang, Pertile, and Vandy now had little trouble attracting partners. The first of some 14 to sign on was Medecins Sans Frontiers-Holland, the Dutch arm of the international medical humanitarian NGO, followed by a similar organization from Argentina, Medicos del Mundo. The American ophthalmologist featured in The Times, Dr. Steven Yeh, helped Vandy and Mattia create clinical protocols.
Beginning in June 2015, a small group of PIHers traversed the country coordinating the screenings and treatments, largely like they had in Port Loko. Again, Ebola survivors themselves proved invaluable. “The Ebola survivors were key to the success of the program,” says Mattia. “They were the ones who brought their neighbors and checked on them.”
There were challenges. The rainy season slowed progress until September, when mud bogs dried into roads. Some complained that survivors were getting unfairly good health care. And some survivors were reached too late, after uveitis had destroyed their eyes. “There was no way to help them,” says Mattia.
But there was also luck. Initially, clinicians had worried that everything was happening too slowly, but that largely wasn’t the case. Even many Ebola survivors in the east, who were screened a year after being discharged, recovered.
By March 31, 2016, the program had screened 3,058 survivors and treated 379 for uveitis.
Some, like John Kaifinch, relapsed. The 30-year-old Ebola survivor from East Freetown was diagnosed with uveitis, got the right medication, and stuck to the regimen. After his eyesight returned to normal, he was hired by PIH to help find other survivors in need of screening. But two months later, he began coughing blood and was diagnosed with tuberculosis. Then, a month after undergoing TB treatment, his uveitis recurred. “It’s a stubborn disease,” he says. And indeed, follow-up has proven key.
But lasting successes are also clear.
“What PIH and the Ministry of Health contributed to survivor care has transformed how we’re going to deal with outbreaks in the future,” says Dr. Sharmistha Mishra, a clinical consultant with the World Health Organization.
The WHO’s 31-page “Interim Guidance: Clinical care for survivors of Ebola virus disease,” published in April, leans heavily on what was learned in PIH’s uveitis treatment campaigns. Hopefully it will make the disease easier to fund and treat in the future.