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“Death from TB is caused by human choice. It is caused by human-built systems. And so that is terrifying and horrifying and deeply upsetting. It means we are not doing a good job of assigning equal value to every human life,” had said the famous American author John Green at a panel discussion during United Nations General Assembly last year
This is so very true. What else will explain 10.8 million people suffering with TB disease last year when we had the tools and evidence to prevent every single case of TB transmission? What will explain 1.1 million people dying of TB last year when we have the best of tools to diagnose, treat and care for those with TB?
TB is a sad but real story of inequity and injustice. We conveniently refer to it as a ‘disease of the poor’ but shy away from saying the truth- that those who enjoy privileges, rights, entitlements and live a life free from hunger, poverty, homelessness and other forms of discriminations, are much less vulnerable to TB. It is the inequity that puts people at risk of TB. It is the social injustices that deny them timely and accurate diagnosis, deny them the best of treatments, deny them social support and security that puts them at heightened risk of TB and even TB death (along with a range of other human rights abuses and violations).
These injustices have been existing since times immemorial and have played a big role in damping the TB response.
Ela Gandhi, a South African peace activist who fought against apartheid with Nelson Mandela and others and was a Member of Parliament of South Africa from 1994 to2004, (she is also the granddaughter of Mahatma Gandhi), said that while she was reading about the discovery of Mycobacterium tuberculosis (bacterium that causes TB) in 1882, she realised it mentions that TB killed one out of every seven people living in the USA and Europe in those days.
“But there was absolutely no mention of the people dying of TB in Asia and Africa or other parts of the world. This is the pattern we see all through the ages. Black lives do not matter and when I say ‘black,’ it is inclusive of all non-whites – we are still grappling with health inequities,” she said.
Taking Care: The Black Angels of Seaview Hospital
During 1913 – 1961, Seaview Hospital (which was a sanatorium too) in Staten Island New York, USA, was taking care of people with TB. In those days, TB was a leading cause of death among New Yorkers killing thousands of people every year. Of course, back then there was no cure for TB. And to top it all, the white nursing staff refused to work there for fear of contracting the dreaded disease.
So, Seaview Hospital recruited black nurses. These nurses earned the name of “Black Angels” – black because of their skin colour, and angels because they broke racial barriers and risked their lives to take care of the people with TB.
Recently, in September 2024, we met Virginia Allen – one of those Black Angel nurses who served in Seaview Hospital.
Now over 93 years old, Virginia (who still drives her own car) joined Seaview Hospital as a 16-year-old trainee nurse in 1947 and worked there for 10 years. She was assigned to the children’s building, to take care of the children with TB, despite the constant threat of getting infected herself.
“Seaview Hospital provided an opportunity for black nurses – who in those days were unable to find jobs otherwise in the profession that they were trained in, because of racism and the segregation of hospitals. Out of 29 hospitals in New York City, Seaview Hospital was one of the four hospitals that would hire Black nurses. These nurses served the patients diligently, even though their own lives were in danger,” recalled Virginia Allen while speaking at one of the End TB Dialogues hosted by CNS (Citizen News Service).
“We were on the frontlines of the fight against TB long before the cure came, doing what nurses do – take care of the patients to the best of our ability and follow the doctors’ orders. I took care of the children with TB. They were like any other child who would have been at home- very inquisitive – and anxious too about being away from their parents. They did require a lot of care, not only because they were sick but also because of being separated from their families. But I loved the children and I loved my job. As I grew older, I realised how important it is to remember those nurses who came before us,” said Virginia.
Have you read the book Black Angels?
Maria Smilios, adjunct lecturer at Columbia University Mailman School of Public Health, has helped immortalise the work of the black Angel nurses through her book “The Black Angels: the untold story of the nurses who helped cure tuberculosis,” that was published in 2023. The book celebrates works that affirm the highest value of the human spirit. It won the 2024 Christopher Award in Literature; was a finalist for the prestigious Gotham Book Prize; and chosen as an NPR Science Friday Summer Read for 2024. The book was also selected as one of the two finalists for the National Association of Science Writers Journalism Award 2024.
“When I was a child, I wanted to study science. I had a sixth-grade science teacher who had given back my final exam result with a big ’42’ written on the top. He looked at me and said – “that is okay, you have a ‘girl brain’ and girl brains do not do science. Girl brains do poetry and get married.” I did not study science then. I studied literature. Later while freelance editing for Springer Science, I got back to science in a way,” shared Maria. “When recently I learnt I was a finalist for National Association of Science Writers Journalism Award, I just thought if that teacher was alive and could see that girls could do science too.” Gender-based harmful stereotypes and social norms need to be countered and dismantled if we are to achieve health and gender justice.
Gabriela Leone, the co-curator of the exhibition titled “Taking Care: The Black Angels of Seaview Hospital” (which is open for public view till 29 December 2024 at Staten Island Museum), said that Maria’s book “Black Angels” greatly informed and inspired the exhibition.
Isoniazid study to cure TB
In 1951, Seaview Hospital conducted the clinical study of isoniazid (one of the two most powerful first-line anti-TB drugs even today). Seaview’s black Angel nurses and other support staff conducted the study- counselling the patients and seeking consent from every study participant, administering medicines, monitoring and observing patients, and reporting results to the two doctors-in-charge (Dr Edward Robitzek and Dr Irving Selikoff). This was a landmark study as isoniazid was shown to work in curing TB when other therapies did not. It could be used in combination with other drugs for improved treatment outcomes.
Dr Edward and Dr Irving received the prestigious Lasker Award for their work, but the black Angel nurses and support staff who risked their lives to help conduct the study, did not receive the same recognition.
This real story of isoniazid study and how black Angel nurses were made to slip on the blind-spot when it came to awards and recognitions, was one of the drivers for Maria to write the book.
“Black women in science had been erased from this narrative. I am not saying that the men do not deserve the accolades, which they received, but the women who helped conduct these studies, also deserved it. In fact, Dr Edward Robitzek had said: ‘had it not been for the black nurses, none of this would have been able to happen’.”
Maria reflects on the inequities plaguing our health systems even today. “We have a two-tiered healthcare system,” she says, referring to a small number of rich privileged elites who can get best of healthcare services while the majority of human population struggles to access even the basic healthcare.
Agrees Ela Gandhi: “Unless we have proper living conditions for everyone, along with safe housing, just wages, nutrition, water, sanitation and hygiene, how will we prevent diseases that lack of these basic necessities puts people at risk (such as TB)? We must end poverty and hunger and ensure everyone has equitable access to healthcare services in a rights-based manner.
“Racial inequities and injustices continue to plague the TB response even today. Most of the TB burden is in poor countries (low- and middle-income countries) in the Global South. Even in the rich nations, marginalised communities are at higher risk of TB”, says Tariro Kutadza, TB and HIV community leader from Zimbabwe.
Kutadza lauds Virginia Allen and all other black Angel nurses who took care of the patients without any prejudice or discrimination 100 years ago. They did justice to their duty and humanity by taking care of all TB patients regardless of whether they were white or black or brown; whether they were Americans or Latinos or from any part of the world; whether they were rich or poor. The accountability needle and question is pointing towards all other nurses – white nurses in this context – who stayed away from serving their duty and the cause of TB, she said.
We can end TB only if we end inequity, inequality and injustice. If we can ensure access for everyone to the full range of best of TB services in a people-centred and rights-based manner, then only we will be able to move towards ending TB. When we say, “all lives matter,” then does this include lives of us in the Global South also, wonders, Tariro.
Agrees Maria Smilios: “TB is a disease for which we say that it is curable – and add in the same sentence that ‘it is a leading infectious disease killer in the world.’ If we have a cure, then how come TB is a top killer infectious disease today?” It is because of inequities and injustices that plague our societies where ‘some are more equal than others’ when it comes to access to health and rights. “Health inequities exist because we continue to ignore other people.”
While many scientific advances have been made since the times of the Black Angels for prevention, diagnosis, treatment and care of people with TB, they are still not available to 1.1 million people today who died from it and 10.8 million people who got infected with TB last year. Unless we end all forms of inequities and injustices that plague our health and social services and bridge the deadly divide between rich and the poor, we will not only fail to end TB but instead force people to live in risky situations that put them at risk of TB and TB deaths – and face a range of other human rights violations. It is high time we make the right choice grounded in human rights, racial equity and development justice.
Shobha Shukla, Bobby Ramakant – CNS (Citizen News Service)
