Touch and Trust

IT WAS SOMETIME in 2016 that Neha Suri’s life turned upside down. The tumour excised from her husband’s neck had returned and began to spread rapidly into his bones. He would die later that year. The condition that Suri herself suffers from, retinitis pigmentosa, because of which she had been gradually losing vision in both eyes, was now rapidly accelerating. She could just about make out faces and colours then. Soon, even that would disappear. Amidst this turmoil was her young son—just 12 then—and her fears of who would care for him.

“It was a very tough period,” Suri says. “I was a housewife. When my husband died, I knew I now had to fend for my son and myself.”

Suri, who suffers from about 80 per cent blindness in both eyes, joined the National Association of the Blind India Centre for Blind Women and Disability Studies (NABCBW), a nonprofit, where she began to learn how to operate computers. Then a few months later, her superiors at the NGO insisted she join a new programme where blind women would be trained to detect breast cancer. Suri’s first instinct was to decline. “It wasn’t because of my blindness. I hated science in school. How could I go through it all over again?” she says with a laugh. “But they told me to try it, and then I could decide if I wanted to go ahead with it.”

Suri was being roped in to a novel experiment, first introduced in Germany a few years before, where blind and visually impaired women are trained in clinical breast examinations to search for cancer. Called Medical Tactile Examiners (MTE), their proponents say, that blindness, far from being a crutch, bestows upon them a gift in this field. “Since we have lost sight and rely on other faculties, like hearing and touch, these faculties tend to be more developed. So we use this heightened sense of touch to palpate very tiny tumours and lumps,” Suri says. According to Frank Hoffmann, a gynaecologist in Germany who developed the concept of medical tactile examiners through the NGO Discovering Hands, MTEs can catch very tiny lumps, as small as 6-8mm, some of which even doctors might miss out on. Here, using strips of tape called “docos” marked with Braille coordinates, MTEs spend anywhere between 30 to 45 minutes pal­pating every centimetre of the breast—in marked contrast to most sighted physicians, it is said, who have little time beyond 10 minutes or so for most such examinations—differentiating between the different kinds of lumps felt, before documenting these findings and passing it along to the doctor.

The programme to introduce MTEs began successfully in India in 2017. NABCBW collaborated with Discovering Hands to train instructors, who in turn started a nine-month-long training programme in Delhi for MTEs, which included a three-month internship at a hospital. Every year, several visually impaired women graduated as MTEs and got employed in different hos­pitals and medical centres across the country. Several of them also participated in camps, organised in various places, to screen large numbers of women. Given the breast cancer burden in the coun­try, where the cancers go undetected for vast swathes of patients, often until very late, and the poor ratio of doctors to patients, the use of MTEs especially in the early detection of cancer, if the con­cept caught on, its proponents had felt, could have a large impact.

But then the pandemic struck. “Since this was all touch-based, obviously it came to a close,” says Shalini Khanna, the director of NABCBW. No new batches were trained from 2020 onwards. Many MTEs employed at various hospitals and centres also found themselves out of jobs.

The programme has now started bouncing back again. Train­ing for new batches resumed in 2022. Many MTEs again started finding employment in various hospitals and centres. About a month ago, the Haryana government deployed six MTEs as part of a “Savera” programme in some of their hospitals and primary health centres. Nisha Niksham, a sprightly 24-year-old who moved from Ludhiana in Punjab to Delhi for better prospects a couple of years ago, is one of them. “People who come for screen­ings have very different reactions when they realise I am blind,” she says. “Many of the patients coming here are those living close by, whom ASHA [accredited social health activists] workers en­courage to come for screening. They tend to be anxious about being detected with some illness. Some also get surprised to see I’m blind. So, I try to ease their concerns,” she says. “Sometimes, my being blind helps. It eases their concerns about their privacy.”

Niksham is a capable young woman. Despite becoming blind at a very young age and losing her parents later, she went on to graduate, and taught at a school for visually impaired children, before moving to Delhi and enrolling herself for the MTE pro­gramme. She had her younger sister live in a children’s home in Ludhiana when she moved to Delhi but has since relocated her sibling, and the two now live together in a paying guest accom­modation. “I have always been independent and confident. But working in this medical field, and being able to help others in this manner, has brought its own sort of happiness to me,” she says.

Khanna, who has been pushing for greater adoption of MTEs for quite some time, is pleased that these efforts are paying off. Despite the spanner the pandemic threw, there are currently around 30 MTEs employed in different hospitals and primary health centres across India. Most of them are currently employed in public and private hospitals in Delhi and Gurugram, but there are several more located in other cities like Varanasi and Benga­luru too. Some of them also participate in camps, organised in various places, to screen large numbers of women.

The groundwork for the programme was first laid in 2016, when Khanna, along with a few others, travelled to Germany to see how Discovering Hands had developed this concept. “They [Discovering Hands] were aware of the high burden of breast can­cer in India and the problems faced here, and wanted to expand this concept to India,” Khanna says. “We went to see how it was conducted and if we could replicate it in India. We were very ex­cited, but we knew it was going to be challenging too.”

MTEs go through a rigorous training period of six months, fol­lowed by a three-month internship at a hospital. For the first batch, since this was the first such attempt in India, the whole duration of the course, both the training and internship period, stretched on for nearly a whole year. Meenakshi Gupta, a 32-year-old from Delhi, was in this batch. Since then, she has worked in a number of pri­vate hospitals and is currently employed at Medanta in Gurugram. “When the patients first see us, they are just shocked at how easily we go through our lives, whether it’s using computers or travelling to work and back on the Metro. But some tend to be nervous too. So, we explain what we do and put them at ease,” she says.

India witnesses one of the highest rates of breast cancer in the world. Studies have also shown how a majority of cases are diagnosed at a very advanced stage of the disease—usually, stage three or four—which considerably reduces survival rates. Standard tests used to detect breast cancer, such as mammography and ul­trasound, aren’t easily accessible or affordable. The vast number of patients that doctors see daily also means very few can devote much time to examinations. A team of trained blind women whose abil­ity to detect breast cancer is as good as a doctor, deployed at various hospitals and centres, it is felt, could make a big difference.

“Many of the patients coming here are those living nearby. ASHA workers encourage them to come for screening. Some are surprised to see I’m blind. So I try to ease their concerns,” says Nisha Niksham, medical tactile examiner

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It has however been challenging to expand this programme. Since the training tends to be tough and costly, only around eight or so individuals graduate as MTEs usually. Each examination by an MTE also tends to take between 30 to 45 minutes, since these are done meticulously, centimetre by centimetre. “There is an issue of space at hospitals. So, we are often asked if we could reduce this amount of time spent, which is something we can’t do,” Khanna says. Inspite of these challenges, the programme has been success­ful. Last year, a study in Medical Research Archive, analysing 1,338 patients examined by MTEs in Delhi and comparing those with re­sults of ultrasound of the breast for patients less than 40 years of age and mammogram for those above 40—by doctors from CK Birla Hospital for Women in Gurugram, in collaboration with NABCBW and Discovering Hands—found that “the process of tactile breast examination by the visually impaired appears apt for breast screen­ing as it detects almost any aberration, both benign and malignant, in the breast which is amenable to human touch and misses out in just 1% changes which can be malignant.”

Back in 2020, when the pandemic struck, like many other MTEs, Suri also found herself out of a job. She was employed by NABCBW to help with their computer work. With training now having re­sumed, Suri had also begun serving as a mentor for new MTEs, apart from occasionally filling in for other MTEs at their hospitals and participating in breast-screening camps. She has so far, she estimates, examined over 600 women in all, and detected abnor­malities in quite a few. “I used to know so little back then. I did not even know much about cancer. Or that there are types of cancers,” she says. “My husband’s death shattered me. Now, every time I do an examination, I’m constantly thinking if I can detect even one case of cancer early, if even one person and her family don’t have to go through what I went through, that is what motivates me.”

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Lhendup G Bhutia

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