East Africa’s mpox responders fight stigma with ‘love and dignity’
| Kampala, Uganda; and Goma, Congo
Since the beginning of this year, Congo has reported nearly 20,000 cases of and 600 deaths from the viral disease mpox, which is similar to smallpox. Recently, the outbreak has spread beyond its borders, and the World Health Organization now calls it a “public health emergency of international concern.”
Highly visible, poorly understood by the public, and often transmitted through sexual contact, mpox is in many ways a perfect storm for generating shame and fear in communities where it spreads.
Why We Wrote This
East African countries have a long track record of tackling fear, shame, and misinformation during disease outbreaks. Now they are bringing that knowledge to the fight against mpox.
However, across East Africa, communities are drawing on lessons from past public health crises – including the coronavirus, Ebola, and HIV – to fight the stigma associated with the disease.
“We’ve learned the importance of empathy” in disease outbreaks, says Dr. Pasquine Ogunsanya, founder and executive director of Alive Medical Services, an HIV clinic in Uganda’s capital, Kampala. That means “treating our clients with love and dignity, and clear communication and community involvement.”
When patients arrive in the sun-dappled courtyard of Alive Medical Services, an HIV clinic in a modest brick building on the outskirts of Uganda’s capital, they are greeted warmly by the staff. Posters – one featuring the smiling face of musician Alicia Keys – offer upbeat, judgment-free advice for HIV prevention and treatment.
The message is clear: Being HIV positive is nothing to be ashamed of.
Now, the clinic is turning its proud defiance of stigma to another illness, mpox. Since the beginning of 2024, neighboring Democratic Republic of Congo has reported nearly 20,000 cases of and 600 deaths from the viral disease, which is similar to smallpox.
Why We Wrote This
East African countries have a long track record of tackling fear, shame, and misinformation during disease outbreaks. Now they are bringing that knowledge to the fight against mpox.
Highly visible, poorly understood by the public, and often transmitted through sexual contact, mpox is in many ways a perfect storm for generating shame and fear in communities where it spreads.
But now, those same communities are drawing on lessons from past public health crises – including the coronavirus, Ebola, and HIV – to fight stigma and fear, and in doing so to help stop the disease’s spread. With mpox recently declared by the World Health Organization a “public health emergency of international concern,” those lessons have global stakes.
To be clear, East African public health experts say, stopping mpox first and foremost requires adequate access to care and treatment. But it also demands compassion and inclusion.
“We’ve learned the importance of empathy” in disease outbreaks, says Dr. Pasquine Ogunsanya, Alive Medical Services’ founder and executive director. That means “treating our clients with love and dignity, and clear communication and community involvement.”
“Without fear”
Living in a displacement camp on the edge of Goma in eastern Congo, Solange Kavira Kavake wasn’t sure where to turn for help when she began to feel unwell.
The mother of four tried doctors and traditional healers before eventually being diagnosed at a local hospital with mpox, a disease she had never heard of before.
Unbeknownst to Ms. Kavake, she was living at the heart of an outbreak of mpox, the disease previously known as monkeypox. Congo is no stranger to the disease, which was first recorded in humans here, in 1970. Mpox most recently made headlines in 2022 and 2023, when it infected more than 87,000 people globally.
That strain of mpox is largely sexually transmitted, and although its numbers are on the decline, it continues to circulate. Meanwhile, the current outbreak, which began in Congo late last year, is linked to a new, more virulent form of the disease. To date, this new strain has been found in five East African countries, Sweden, and Thailand.
During her month at an mpox treatment center, Ms. Kavake learned that the disease was often passed along by close contact with a sick person. When she left the hospital, she became determined to help stop that chain by encouraging people to practice good hygiene.
“We were told to become messengers,” she says. “When I see someone who is sick, I tell them to go to the hospital without fear, because I was treated well.”
That kind of grassroots sharing of knowledge is essential for stopping any virus, says Dr. Suudhi Bamutya, manager for epidemics and preparedness at the Uganda Red Cross Society. That is particularly true for mpox. Because the illness is highly visible and can be spread through sexual contact or by eating the meat of contaminated animals, it carries increased risk of shame and secrecy, he says.
“Public health interventions being put in place will not be effective if there is stigma,” Dr. Bamutya explains. To date, Uganda has only 10 confirmed cases of mpox, but that could change quickly. Therefore, he says the Red Cross has enlisted local leaders and educators to spread messages about hand-washing, social distancing, and the importance of visiting a doctor if you become ill.
A pivotal moment
Indeed, how mpox is managed now will be crucial to determining how widely the disease spreads, experts say.
Already, it is moving across the region’s borders, carried – as was HIV before it – by long-haul truck drivers.
Neighboring Burundi has already recorded more than 1,000 confirmed or suspected cases. Isolated cases have also been confirmed in Kenya and Rwanda, and experts say it is likely there are also additional cases in the region that have not been reported.
With the situation shifting fast, up-to-date and clear information has often been hard to come by for doctors, activists, journalists, and community members alike. That, in turn, makes it more difficult for authorities to communicate clearly and effectively with communities affected by the disease.
Open, frank dialogue is essential, experts say. Sitting in her Kampala clinic, Dr. Ogunsanya says her country’s globally lauded success in containing HIV is proof positive of that. The walls of her office are lined with awards and memorabilia from her long career in public health.
“We’ve learned that when people understand a particular health issue, when you explain to them clearly, they won’t be afraid,” she says.
