Surviving Ebola isn’t easy. You might think it’s a thing to celebrate, overcoming a deadly and fearful disease, and it is, of course.
However, survivors have often lost family members. Their possessions have been burned for fear of contagion. And they may go back to hostile neighbors uncertain that they are really safe.
Gladys Gassama knows what to do to help.
“We calm them down and we raise their hopes,” said Gassama, director of the Voluntary Counseling and Testing Center at Kenema Government Hospital in Kenema, Sierra Leone. Gassama has spent more than a decade working as an AIDS counselor, heading a staff of about 12 who are teaching people about how the virus is — and isn’t — spread. The skills she has developed to fight AIDS stigma translate beautifully to Ebola.
“We calm them down and we raise their hopes."
Ebola has taken the lives of 5,000 people, maybe more, in Sierra Leone, Liberia and Guinea. It’s looking a little better in Liberia, but the epidemic appears to be worsening in Sierra Leone, according to World Health Organization statistics.
But 30 to 50 percent of patients are surviving. They’re usually the luckiest ones — those who managed to get to treatment centers like the one at Kenema, often by trekking for hours or even days from remote areas. They face an arduous journey home and are often uncertain of their welcome.
“They need support. All of their things have been burned,” says Dr. Kimberly Pringle, an Epidemic Intelligence Service Officer for the Centers for Disease Control and Prevention who worked with Gassama and her colleagues for a month this past fall.
The reintegration program provides them a discharge package. “Soap, water, a mattress,” Pringle said. “Cooking utensils, things like that.”
And the workers, some of them volunteers who can only hope they’ll eventually get paid, also provide moral support. That includes a live escort back home. Not all of their neighbors welcome them back, and need in-person reassurance that Ebola survivors pose no threat to them or their families.
“Some of those communities are three to four hours away,” Pringle said. Sometimes a counselor goes all the way, and finds community leaders to help reintegrate the survivor. Sometimes, it’s just too far.
“They make a connection with local staff in another district to introduce them to the psychosocial team.”
They counsel about how to keep an eye out for Ebola’s symptoms, which resemble malaria or Lassa fever in the early stages. They also give advice about how to conduct safe funerals. Many of those infected catch the virus when handling the bodies of those who have died from Ebola.
How can trust be won? Just by talking, says Gassama. “I give them my phone number and tell them to call me,” she told NBC News in a telephone interview.
Staffers hold conferences for survivors, helping them trade advice with one another and preparing them for what lies ahead.
The techniques are taken directly from the HIV/AIDS and Lassa fever programs at Kenema — which was headed by Dr. Sheik Umar Khan, an internationally respected doctor and researcher, until he himself died of Ebola in July.
Ebola’s difficult to understand. Any disease with such a high mortality rate is frightening, and people must be educated about whether survivors are infectious. Viruses such as flu can be transmitted for a day or even longer after a patient recovers, but Ebola can only be passed along when the patient is showing active symptoms such as vomiting and diarrhea, or on their bodies after deaths.
Fear, misinformation and stigma are nothing unique to West Africa, of course. In the United States, schools closed and an entire aircraft was disinfected just because people might have been in contact with a nurse who later developed an infection.
"They believe us."
Louise Troh, the former fiancée of the only person to have died of Ebola in the United States, couldn’t find anyone willing to rent her a house in Dallas, even though she was never herself infected. State officials had to step in and find her a home after Thomas Eric Duncan died and her apartment was decontaminated by workers in hazmat suits.
Nurse Kaci Hickox staged a very public battle over what she saw as unfair and medically unnecessary quarantine orders issued against her after she returned to the U.S. from a stint volunteering with Doctors Without Borders in Sierra Leone.
Ebola survivors in Sierra Leone, Liberia and Guinea often get similar treatment, or worse. That’s when the counselors step in to help.
“They will personally go to the community and speak with the chief and the religious leaders and educate the community about how it is OK for the survivor to be there,” Pringle said.
Gassama’s technique is to ask questions first. “We assess what they know,” she said.
Then the gentle process of education begins. It works. “They believe us,” Gassama says simply.