Nearly a year after he was discharged from an Ebola treatment unit, Abdul Karim Bah experienced Ebola symptoms. And he has also been stigmatised and discriminated against.
Bah is one of the estimated 15 000 Sierra Leoneans the United States’s Centers for Disease Control and Prevention (CDC) says were infected with the virus between early 2014 and January 2016. Last month he had diarrhoea, vomiting and chills, which the CDC says are signs of haemorrhagic fever. But Bah didn’t have Ebola.
Research studies have found that these health problems can be permanent if not treated, such as uveitis, an eye condition that may lead to vision loss. Others are debilitating, such as joint pain and chronic fatigue.
Adding to Bah’s trauma was the struggle he and other survivors faced in getting healthcare. Although the government has promised survivors free healthcare, many of them report that they still have to pay at public facilities because essential supplies haven’t yet been procured.
Health workers also discriminate against them, say some of the survivors. On a recent afternoon in Freetown, Sierra Leone’s capital, Bah recounted the story of an expectant mother who was scolded by health workers for getting pregnant soon after having Ebola and was refused admittance to the maternity ward. Another survivor was treated outside the hospital building because the health workers were afraid of treating him alongside other patients.
“I have witnessed cases that I don’t appreciate,” Bah says. “I have witnessed the constraints.”
Bah, who is the chief executive of the Sierra Leone Association of Ebola Survivors (Slaes), goes to a private doctor because of this stigmatisation.
Despite Sierra Leone having recently been declared Ebola-free for the second time by the World Health Organisation (two cases occurred in January, after the country was originally declared safe in November), questions persist about the long-term effects of the virus.
Research studies, such as the Partnership for Research on Ebola Vaccines study in Liberia, are looking at how and where the virus stays in a person’s body, how it affects survivors’ health and the potential transmission to others.
Statements from prominent public figures in Sierra Leone suggesting that sexual transmission from survivors was to blame for the January cases further stigmatised survivors.
They don’t just face discrimination at health facilities: some have been kicked out of their houses and others have seen their children become the target of scorn.
“Even though it was the happiest day in my life when I was discharged from the Ebola treatment unit, the amount of stigma I experienced after discharge was beyond what I could have imagined,” says Abdulai Sankoh, a 28-year-old survivor.
“Community members were pointing fingers at me, people called me ‘Ebola’, my landlord drove [my family] from his compound, and some friends and family members were afraid to get close to me. Community members, friends, almost everyone thinks that we still have the virus in us and that they will get it if they get close to us survivors.”
Support for survivors
To address issues linked to the stigma of Ebola, Bah and others launched Slaes in January last year. Taking inspiration from the global HIV movement, which promotes “living positively”, the organisation encourages survivors to openly accept their status.
The group promotes meetings throughout Sierra Leone where survivors share experiences.
“I started to get relief of my stress and stigma when I [spoke to] other survivors and community members,” says Linda Harding, a Slaes member and nurse who contracted Ebola at work and later lost her husband and five children to the virus.
In the past year, Slaes has achieved national reach and represents the country’s 4 052 survivors. It has called on the government and nongovernmental organisations to provide more services for survivors, many of whom lost family members, jobs and livelihoods, and now need external support.
Organisations have responded, pledging support such as education and nutrition. In addition to free healthcare, the government also promised scholarships for university-level survivors and a financial support package.
The government has already provided substantial support, such as paying school fees for orphans and providing support packages for widows. And President Ernest Bai Koroma has encouraged people to embrace survivors.
But other promises have not been forthcoming. Slaes continues to push the government but “they keep telling us to wait”. This is causing frustration. At a recent Slaes meeting in Freetown, about 30 survivors complained about “unfulfilled promises” and of nonprofit organisations “chopping” (eating) money.
But it’s more than frustration: the promise of support has, inadvertently, spurred a further singling out of survivors.
“Community members … have the perception that we have a lot of opportunity, favours, encouragement and services, which in the real sense is not true,” says Harding.
“House owners start to increase house rental, thinking that we have a lot of money. Some people are refusing to lend us tools to do work thinking that we have more to buy them.”
Brima Amidu told Slaes that his rent had tripled after his landlord heard about the government’s financial support package. Amidu can’t pay it and will have to move out if the price is not lowered.
Gibrilla Sheriff is the district co-ordinator of the organisation’s social protection programme. They are writing in their personal capacity and this article does not reflect the views of Partners in Health.
Mara Kardas-Nelson is a health policy adviser with Partners in Health in Sierra Leone and also writes about health and the environment.