Today marks the 42nd day that Sierra Leone has had no new cases of Ebola. That potentially signals the end of the epidemic in that country.
I spent almost three months in Sierra Leone over the last year, both as a clinician in Ebola treatment units and as an infection control educator. Even though I am not there to witness the festivities, I stand in solidarity with the healthcare workers and communities I know in Sierra Leone that will be celebrating.
But for Ebola survivors this milestone does not mean the end of the impact of this disease on their lives. The last month has significantly altered our understanding of how Ebola virus interacts with the human body, based on new research publications as well as information from the case of Scottish nurse Pauline Cafferkey.
Cafferkey, who volunteered at an Ebola treatment unit in Sierra Leone, contracted Ebola last December. She survived after a protracted battle with the virus only to have it reappear as meningitis months later. This information, taken together with the evidence that Ebola can also survive in the sperm of a quarter of male Ebola survivors up to nine months after recovery, tells us that the virus invades and hides away in areas of the body where the immune system has does not wield a strong response. It then lies in wait, all the while slowly replicating in the background and posing a potential threat to the health of the host.
There is little evidence that a small amount of virus in a site where the immune system cannot reach it would pose a public health threat. The potential exception is a case where a male survivor was confirmed to have infected a woman with Ebola months after recovery. This sexual transmission is thought to be rare.
But Ebola survivors do face the risk of “Post Ebola Virus Syndrome.”
Pauline Cafferkey’s case was likely not the first case of Ebola-related meningitis or encephalitis. It was simply the first case confirmed by laboratory testing. Many colleagues who are serving as clinicians in Sierra Leone have seen multiple cases like hers in Ebola survivors that may have been related to the virus. In fact, a report about a case from January 1, 2015 in Freetown shared similar findings — a patient who developed what was described as “Ebola virus encephalitis” after recovery from the initial illness.
But in most clinical settings in West Africa, it is hard to diagnose a patient presenting with this patient’s symptoms — which included confusion and headaches — as a late manifestation of Ebola. A clinic would need to perform a spinal tap and run the correct diagnostic tests, but resources for these procedures are not readily available. Sometimes it is also difficult to tell a post-Ebola syndrome apart from other diseases such as cerebral malaria or trypanosomasis.
Nevertheless, we have to assume that these late manifestations are already happening in some of the nearly 17,000 Ebola survivors in West Africa.
These new findings about Ebola reveal a severe blind spot in the medical community. Were these symptoms present in Ebola survivors from prior outbreaks as well? Did we just not pick them up because we weren’t looking for them or had no capacity to look for them? How confident can we be about our knowledge of Ebola and other emerging pathogens when the majority of the cases are occurring in communities that lack the medical resources to pick them up.
The Ebola survivors in Sierra Leone and the other affected countries have taught us — the medical and the public health community — the importance of sticking around. Good medical infrastructure and the presence of enough sharp clinicians in the affected areas could not only make a significant difference for the patients but also contribute to the preparedness of the larger global community. For West Africa, the most critical question is how do we equip these healthcare systems, which have been severely debilitated by the Ebola epidemic, to handle the new disease burden among survivors, alongside the burden of other communicable and non-communicable diseases?
My fear as a health worker is that the new knowledge we’re gaining will have a down side for survivors, who may be further stigmatized and shunned. Last January, I had the good fortune to train Ebola survivors in Sierra Leone who were interested in working in Ebola treatment units. In some cases, they were healthcare workers and in others, they wanted to be advocates for and helpers to patients still in Ebola treatment units. In all cases, they were looking for employment, which is difficult to find when you are labeled as an Ebola survivor.
At the end of our training sessions, we would gather in a circle to hear the participants who wanted to share their stories of survival. The most poignant theme that emerged from their stories, aside from their immense personal bravery, was the sickening feeling of being dehumanized because of the fear of the virus. These survivors faced it during their illness and in many instances, after they left the treatment units.
I cannot imagine how hard it is for them to now hear that the very thing that caused that alienation could still lie hidden within their bodies. And that puts an additional burden on health workers and the media as well: The way we communicate about these new findings is critical — to ensure that the survivors are encouraged to seek care as well as to aid the health community in preventing future infections and another wave of stigma.
Dr. Nahid Bhadelia is an infectious disease physician and Boston Medical Center and director of infection control at National Emerging Infectious Diseases Laboratory.
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