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The Girl-Shaped Hole in Global Health Data

In India, over half of adolescent girls are anemic. Many are never treated, though, because health systems ignore them.

Written by Alia Dharssi Published on Read time Approx. 6 minutes
Over half of Indian girls aged 10 to 19 are anemic, which led the government to launch a $54 million program for iron and folic acid supplementation.Photo by Frédéric Soltan/Corbis via Getty Images

Sapna Singh, a wide-eyed teenage girl from rural Uttar Pradesh, India, used to grow dizzy and faint as many as six or seven times per month. The dizzy spells seemingly struck at random, she says, forcing her to miss days at school, from which she has since dropped out.

Singh’s health has finally begun to improve in the last year, thanks to a woman who runs the local Anganwadi, a rural women and children’s health center. She told Singh she seemed to be suffering from anemia, or khoon ki kami (lack of blood) in Hindi, and prescribed her weekly iron and folic acid (IFA) supplements. Phoolkumari Singh, the Anganwadi worker, tracks her consumption of the supplements in a wide record book with a pink cover and pages with cartoons describing symptoms of anemia.

“Now, I can work more than before, and get less tired than before,” says Sapna Singh. She says the supplements have given her strength for tasks she once struggled to complete, including cooking, fetching water and helping with farm labor in her village. This energy is particularly important in their village of Adampur Barethi, which sits amid wheat fields dotted with mango, guava and papaya trees.

Singh is lucky; millions of adolescent girls across India do not get the benefit of this simple and inexpensive intervention.

Since 2013, the Indian government has spent upwards of $54 million on its Weekly Iron and Folic Acid Supplementation program for 100 million adolescents, recognizing that over half of Indian girls aged 10 to 19 are anemic, along with 30 percent of boys.

But as with many health programs, while the intentions may be noble, the data and implementation are lacking. This is in part due to India’s sheer size; the state of Uttar Pradesh alone has a population of over 200 million, spread out over nearly 100,000 square miles. If it were a country, it would be the world’s fifth most populous, as well as the poorest of the world’s 10 most populous countries.

The Indian government aims to deliver supplements to adolescent girls in public school, as well as via Anganwadis that target girls who have dropped out, but the program still has trouble finding the girls who need them. Even when they find them, they have trouble getting the girls to actually take the supplements.

It isn’t just disorganization causing the problem, though that is certainly a factor. In India and around the world, there is a chasm of data when it comes to adolescent girls, and particularly about their nutrition. Without data, it is hard to fix the problems they face.

Phoolkumari Singh’s pink notebook – mundane as it may seem – is at the forefront of changing this, providing one of the first systematic attempts at gathering detailed information about adolescent girls and anemia.

“They don’t know how many tablets have to be delivered to which areas,” says Sunil Kumar of Nutrition International, which is helping Uttar Pradesh’s government tackle logistical challenges, including record keeping, related to reducing anemia among women and girls. “There are very, very huge gaps.”

The cost of these gaps is high. Anemia, which is often caused by low iron levels that hinder the flow of oxygen, can make adolescents feel so tired, dizzy and drowsy they may struggle in school or drop out altogether. When left untreated, it can also impair mental and physical development, as well as life expectancy. Girls are particularly hard hit because of the blood they lose when they start menstruating – and because they may receive less nutritious food than their brothers, who typically receive bigger portions when there isn’t enough food to go around.

Despite the stakes, the nutrition of adolescent girls like Sapna Singh has long been overlooked by public health systems. In Uttar Pradesh, only 15 percent of adolescent girls who are supposed to take IFA supplements receive them, according to research by Nutrition International. Of these, about 30 percent toss the pill due to misconceptions about its purpose and side effects.

These poor outcomes start with even worse data. Nobody knows exactly how many adolescents have anemia in different parts of India, says Mini Varghese, India program manager at Nutrition International. While there are some sporadic regional studies and information about the problem at a national level, that’s not enough to know how the problem is affecting adolescents by region or class, which is critical for helping them.

IFA supplements are supposed to be delivered to all adolescents in government schools, but again, nobody is sure which schools or students are receiving supplies. In Uttar Pradesh, nearly half of the students listed on primary school registers aren’t attending them, according to a 2016 government survey. Millions go to private schools, which aren’t included in the IFA program, and others, like Sapna Singh, drop out. Meanwhile, corrupt school principals line their pockets with the funds allocated to missing students, says Varghese.

Out-of-school girls like Singh are hardest to reach. Anganwadi workers are tasked with giving them pills once a week (as well as educating them on what foods prevent anemia), but girls might never make it to them.

These challenges extend well beyond India. According to the 2017 Global Nutrition Report, many countries face blind spots when it comes to adolescent nutrition. Purnima Menon, a senior research fellow at the International Food Policy Research Institute, believes the reason for this lies in the history of global development. Today’s global data systems started with a focus on contraception and fertility among married women aged 15 to 49, as well as the survival of children under five. Adolescents have long been the missing middle.

Meanwhile, the data that do exist regarding adolescent health often have a male bias, according to Plan International, a child rights organization. Many surveys are designed to obtain responses from male heads of household, who may not provide full information on women and girls. In some cases, such as the poverty rates in many countries, data are gathered at the household level and can’t be broken down by gender.

In other cases, such as statistics on the health of adolescent girls, data don’t exist at all. In fact, information is available for less than one-fifth of the targets that the world is supposed to track for the United Nations’ Sustainable Development Goal on gender equality.

“Data is not gender neutral,” says Saadya Hamdani, director of gender equality at Plan International Canada, a child rights organization. “For a couple of reasons, starting with participation. Who is registered at birth? If there is even the slightest cost associated with birth registration, such as a little fee or maybe having to travel to some other place to go and get your baby registered, the likelihood is that, if it’s a girl, the idea will be dropped.”

Girls themselves are rarely interviewed directly in major surveys, although nonprofits, including Nutrition International, have started employing them as enumerators for their projects.

The blind spots are slowly being filled. In addition to the work of groups like Nutrition International, the Bill & Melinda Gates Foundation is spending millions on closing the global gender data gap through groups like Data2x and Equal Measures 2030.

“We’re seeing an unprecedented moment right now around policymakers at the global and national levels who are really focused on this topic,” says Rebecca Furst-Nichols, deputy director of Data2x. “The one challenge is following the rhetoric with funding.”

Back in India, the government is undertaking a national survey to obtain comprehensive nutrition data for children from birth to 19. It will provide the first comprehensive set of national data on adolescent nutrition, including adolescent anemia.

It’s a complicated problem to solve, but girls lucky enough to get supplements feel a daily difference. Archana Singh, another out-of-school teenager from the same village as Sapna Singh, did not swallow the IFA tablets she was given when she was in school because she did not know about their benefits.

“My mother used to direct me to do this task or that task. I used to tell her, ‘Mummy, I feel weak,’” recalls Singh. Since then, Phoolkumari Singh has convinced Archana Singh to visit the local Anganwadi regularly for supplements. They give her energy to make chapati, work in the fields, feed cattle and fetch water from far away. “I feel very good.”

After the interview, Archana Singh jumps onto a bicycle, returning to her village with a friend who uses the luggage rack as a passenger seat. Then, Phoolkumari Singh locks up the Anganwadi before visiting pregnant women and new mothers in their homes. Inside, she leaves behind her wide pink register, filled with black ink marks that help the health ministry figure out how many girls take iron supplements.

This article first appeared in BRIGHT Magazine.

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