Banu (sitting), seen here with her husband and two of their daughters, still suffers from the emotional scars and stigma of having had smallpox. — Photos: TNS
As a toddler in rural Bangladesh, Rahima Banu was the last person in the world known to contract variola major – the deadly form of smallpox – through natural infection.
In October 1975, after World Health Organization (WHO) epidemiologists learned of her infection, health workers vaccinated those around her, putting an end to variola major transmission around the world.
The WHO officially declared smallpox eradicated in 1980, and it remains the only human infectious disease ever to have been eradicated.
Among infectious disease doctors like me, Banu is famous as a symbol of the power of science and modern medicine.
And yet, beyond that distinction, she has largely been forgotten by the public.
That fate is a reminder that, well after a global pandemic recedes from headlines in wealthy countries, its survivors have needs that go unmet.
Drying hands in the dirt
Although Banu survived smallpox, she’s been sickly her whole life.
She was once bedridden for three months with fevers and vomiting, but she couldn’t afford to see a good doctor.
The doctor she could afford, she recalled, prescribed her cooked fish heads.
Banu also complains of poor vision: “I cannot thread a needle, because I cannot see clearly,” she told me, via a translator, during an interview in Digholdi, the village where she lives.
“I cannot examine the lice on my son’s head and cannot read the Quran well because of my vision,” she said.
In the years following smallpox eradication, journalists from all over the world travelled to interview Banu, but they petered out years ago.
“Mother is so famous, but they do not take any follow-up of mum to know whether she is in a good or bad state,” her middle daughter, Nazma Begum, told me.
Banu and her family are proud of her place in history, but their role in the eradication of smallpox speaks to the limits of merely fighting diseases.
In his biography of the doctor and philanthropist Paul Farmer, author Tracy Kidder recorded a Haitian saying: “Giving people medicine for TB [tuberculosis] and not giving them food is like washing your hands and drying them in the dirt.”
After Banu and her family survived smallpox, the rest of the world dried its hands in the dirt – just as it did for the poorest victims of Covid-19, and later, the most marginalised people with mpox, formerly known as monkeypox.
Islam, seen here in front of their one-room home in August 2022, pedals a rickshaw and might make 500 taka on a good day or nothing on a bad day.
Struggling to survive
I travelled to South Asia to speak with ageing public health workers and smallpox survivors in South Asia for the audio-documentary podcast Epidemic: Eradicating Smallpox.
To meet Banu, I flew 14 hours to Delhi in India (from the United States) and another two hours the next day to Dhaka in Bangladesh, then took a five-hour drive to the city of Barishal, followed the next day by a 90-minute ferry ride and a two-hour drive to arrive in Digholdi.
Banu and her family – her husband, their three daughters and their son – share a one-room bamboo-and-corrugated-metal home with a mud floor.
The home, which lacks indoor plumbing, is divided down the middle by a screen and a curtain.
Water leaks in through the roof, soaking their beds.
A bare bulb hangs from a wire overhead.
Her in-laws used to live with them too, but they have passed away.
Women in rural Bangladesh rarely work outside the home.
Banu’s husband, Rafiqul Islam, pedals a rickshaw.
Some days he earns nothing. On a good day, he might make 500 taka (not quite US$5 or RM23.34).
Although the WHO arranged for a plot of land in her name, Banu said, the family has nowhere to cultivate.
“They gave me the land, but the river consumes that. Some of it is in the river,” she said.
Cyclones and rising sea levels have led to coastal erosion and saltwater intrusion, and there have also been land disputes.
Begum, now 23, completed a year of college, but then dropped out – Banu and her husband couldn’t afford the fees.
Instead, they arranged for her to marry.
Her mother’s fame “did not help me in any way in my studies or financially,” Begum told me.
The family’s financial life is precarious.
Five hundred taka used to buy a 10-kilogramme bag of rice and vegetables.
During my visit in 2022, the instability of the Russia-Ukraine war created fluctuating oil prices, and Banu said that amount was enough to pay only for the rice.
Left behind
Banu is well aware that thanks to vaccination, millions of people no longer die of smallpox and other infectious diseases.
Banu is pictured here in her mother’s arms in October 1975. Although she became a poster child for one of public health’s greatest achievements, she did not share in the prestige or rewards that came with the eradication of smallpox.
By one estimate, the eradication of smallpox has prevented at least five million deaths around the world each year.
Vaccines remain one of the most cost-effective and lifesaving gifts of modern medicine.
The US Centers for Disease Control and Prevention (CDC) estimates that the US saves 10 times what it spends on childhood vaccination.
But all this is cold comfort to Banu when she and her family are struggling to survive.
Every public health crisis leaves people behind.
When I worked as an Ebola aid worker in Guinea in 2015, residents asked why I cared so much about Ebola when local women were haemorrhaging in childbirth and didn’t have enough to eat.
They were right not to trust our efforts.
Why should they upend their lives to help us defeat Ebola?
They knew their lives wouldn’t be materially better when we declared victory and left, as we had done so many times before as soon as our own interests were protected.
Their prediction was correct.
As the Covid-19 pandemic winds down in the US, Banu’s life is a reminder that illness has a long tail of consequences and doesn’t end with a single shot.
The world’s most powerful nation hasn’t ensured equitable access for its own citizens to healthcare and lifesaving tools such as Covid-19 vaccines, Paxlovid and monoclonal antibodies.
The resulting disparities will get worse as the US federal government finishes turning America’s emergency Covid-19 response over to the routine healthcare system.
Many Americans can’t afford to stay home when they or their children are sick.
Families lack support to care for young or elder family members, or people with medical illnesses or disabilities.
Many say their biggest worry is paying for groceries or petrol to get to work.
Their plight is less extreme than Banu’s, but their suffering is real – and it is magnified worldwide.
As long as vulnerable communities are deprived of holistic, comprehensive responses to mpox, Covid-19, Ebola or other public health emergencies to come, these people will have a reason to be suspicious, and enlisting their help to fight the next crisis will be that much harder. – By Dr Céline Gounder/KFF Health News/Tribune News Service
A version of this article first appeared in The Atlantic in August 2022. KFF Health News, formerly known as Kaiser Health News (KHN), is a US national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF – the independent source for US health policy research, polling and journalism.
