Ebola virion

“building and holding public trust by the government and health personnel is the foundation for all control efforts.”

When, in the early 1980s, a wasting disease appeared in gay men in New York, San Francisco and London, the new syndrome mystified doctors. An exploding epidemic of funerals brought fear and prejudice. But the gay community and their networks responded rapidly. As new knowledge emerged about transmission of AIDS through body fluids, and the risks of unprotected sex, health education spread faster than the epidemic. Community groups and networks like the Gay Men’s Health Crisis, set up in January 1982, and the Terrence Higgins Trust later the same year, educated, agitated and acted to reach their friends and clients.

Gay Men’s Health Crisis meeting, 1980s

A year later, in villages around Lake Victoria in Uganda, a similar illness affecting both men and women received the poignant name ‘Slim disease’. Again, local communities responded to conversations in families, bars and village sympathy groups. What were the risk factors? What could men and women do? How could communities provide care to growing numbers of orphan children?

By the time health service programmes rolled out at scale in the US, Europe and Uganda, with aggressive treatment for infections in AIDS sufferers, contact tracing, condom distribution, treatment of partners for other sexually transmitted infections and counselling, HIV incidence had already almost halved. Daniel Low-Beer and his World Health Organisation colleagues suggest that “successful HIV prevention occurred where health governance and programmes… built on community responses”[i]. Before anti-retroviral drugs emerged, randomised controlled trials showed that community groups had more impact than health programmes. Whether communities were trusted and well informed, or dormant and confused, mattered greatly in the spread of the epidemic. Communities could create a “social vaccine”. They shared information, identified people at high risk, put pressure on politicians and district leaders for resources and action, encouraged open discussion about social behaviour, addressed stigma and discrimination, supported and comforted patients and their families, and helped with local surveillance and data collection. Networks of sympathy groups don’t replace health services, vaccines and drugs, but they enhance them in extraordinary ways. Social capital boosts financial and health capital.

In 2015 the Ebola crisis in western Africa brought a massive international and media response. TV and newspapers covered personnel in robotic space suits and masks, scare stories of returning sick aid workers, and mobile treatment facilities, which were often unused. They pressed scientists, at the drop of a hat, to develop new vaccines, drugs and diagnostic kits[ii]. The technology of infectious epidemics is, of course, important. Vaccines are the holy grail for a long-term solution. But maybe the epidemic would have halted much earlier if planners had listened to Francis Omaswa[iii].

Transfer of Spanish priest, Manuel Garcia Viejo, a Spanish priest. (BBC)

In 2000, Omaswa as Director General of Health Services in Uganda, oversaw the previous largest epidemic of Ebola, with 425 cases. “The single most important lesson we learned was that building and holding public trust by the government and health personnel is the foundation for all control efforts. Ebola evokes fear and apprehension… which easily results in herd responses, negative or positive. We achieved public trust in Uganda through very intensive communication with the public.”

Omaswa recognised two key behaviours to control the epidemic: rapid identification and isolation of new patients, and safe burial of infectious victims. Fatal transmission to grieving relatives who customarily touched and embraced the body was a major risk. Behaviour change required community trust and conversation. He brought together chiefs and government village health teams to “stay very close to all families and households…” Omaswa understood that Ebola control rests on strong primary health care principles, “leadership from the top, integrated with routine governance of society and active participation of the people themselves. Once we have controlled this outbreak, let’s institutionalise these practices because we need them anyway but also because there will be another Ebola outbreak soon enough.”

In the offices of government and international agencies in Sierra Leone, Liberia and Guinea, his wise counsel fell on deaf ears. Cheikh Niang, a Senegalese medical anthropologist, observed that medical experts didn’t have the expertise to deal with community resistance[iv]. He found buckets of chlorine for hand sanitisation controlled by men not women. And “people fed up with being told about hand sanitisation… they knew how Ebola is transmitted but wanted to express themselves, be heard and take charge of their health matters and not be told how to do this in a paternalistic way.” Jamie Benson of Restless Development, a small charity, told me the first case in Sierra Leone was reported in May 2014. The first that communities knew was when burial teams, like aliens in white masks and protective clothing, arrived in their village. They were terrified. It took six months before a social mobilisation action consortium got going and much longer to go to scale.

In Sierra Leone, a gang in Freetown called the Tripoli boys, homeless orphans and unemployed adolescents led by a small-time hustler self-styled as ‘Gaddafi’, survive underneath the smoky, corrugated roof shacks that tumble down to rubbish heaps by the water’s edge[v]. Hassled by the army and police, Gaddafi says they are ‘soldiers of their terrain’ rather than dope pushers or petty criminals. As Ebola took hold and the community descended into fear, the Tripoli boys led house-to-house visits to give simple preventive messages to frightened slum families, and accompanied victims with symptoms to hospital. Their bravery was astonishing. Seven of the boys died. Gaddafi survived his own Ebola infection after a month in hospital. Now they’re respected by community leaders. “We did a lot for this country,” says Gaddafi, “and we should get something back. The government don’t care, but these are the best boys in Sierra Leone.”

Tripoli Boys, Freetown (New Internationalist)

Social scientist Robert Dingwall reckons that “it was only in December 2014… that the first properly designed community campaign was launched, in western Sierra Leone, with… religious and traditional leaders, and popular entertainers.” Once community engagement took hold, infection rates fell rapidly. He concluded that “making friends with social scientists is less glamorous than rubbing shoulders with global political leaders, snuggling up to multinational pharmaceutical companies or helping billionaires tell nice stories about themselves at Davos”.

Vaccines and drugs always arrive much later. Creating sympathy groups of scientists and pharmaceutical staff helps to speed things up. The World Health Organisation did, in fact, make up for their slow start, when, under Assistant Director General Marie-Paule Kieny’s leadership, they designed, supervised and published a trial of a new Ebola vaccine to protect contacts within 12 months[vi]. In 2016 they set up the Research and Development Blueprint for Action to Prevent Epidemics to cut delays and red tape[vii]. New vaccines will prevent future outbreaks but a board paper at the World Health Assembly in 2015 was clear. “Community engagement is the one factor that underlies the success of all other control measures.”

From “The Social Edge. The power of sympathy groups for our health, wealth and sustainable future”. Thornwick Press. Published September 2018.

Post-script

The DRC Ebola outbreak is particularly worrying given the rapidity of spread, the weak health systems, and a case found in Mbandaka, an urban area of 1.2 million. But there are three reasons to be optimistic. The DRC government and public health officials have been quick to act. They snuffed out another Ebola outbreak very quickly last year. Second, the WHO response is far superior to the previous West African epidemic. In no small measure, this is due to the leadership of Africa Regional Health Office (AFRO) Director Dr Matshidiso Moeti, a Botswanan doctor and women’s rights campaigner, who has totally transformed the management of AFRO activities since her election in 2015. In my time at WHO I met no-one more impressive. And finally, we do have a vaccine available now to limit the spread of infection among contacts of cases. Hopefully we shall see no repeat of the chaos of the west African epidemic in 2014 which cost the region more than four billion dollars.

Ebola outbreak, map and report on cases, May 15th 2018

References

[i] Low-Beer, Daniel, and Musoke Sempala. “Social Capital and Effective HIV Prevention: Community Responses.” Global Health Governance IV, no. 1 (2010): 1-18.

[ii] Dingwall, Robert. “Ebola – WHO (Still) Don’t Get It: Social Science Saves Lives.” https://www.socialsciencespace.com/?s=Social+science+saves+lives .

[iii] Omaswa, Francis. “Regaining Trust: An Essential Prerequisite for Controlling the Ebola Outbreak.” Lancet Global Health Blog, 2014. http://globalhealth.thelancet.com/2014/08/11/regaining-trust-essential-prerequisite-controlling-ebola-outbreak

[iv] Fleck, F. “The human factor.” Bulletin of the World Health Organization 93: 72-73.

[v] Kamara, M. and A. Bayoh (2013). “Love, loss and reconnection: Stories of life in Sierra Leone after Ebola”. Chapter 7: Gaddafi and the Tripoli Boys. Back in Touch. From https://backintouch.org/.

[vi] Henao-Restrepo, A. M., et al. (2017). “Efficacy and effectiveness of an rVSV-vectored vaccine in preventing Ebola virus disease: final results from the Guinea ring vaccination, open-label, cluster-randomised trial.” The Lancet 389 (10068): 505-518.

[vii] Hombach, Joachim, Martin Friede, Vasee Moorthy, Anthony Costello, Marie Paule Kieny. Developing a vaccine against Zika, BMJ 2016; 355:i5923. http://www.bmj.com/content/355/bmj.i5923