Over summer holiday, I read Abraham Verghese’s novel The Covenant of Water. It tells the story of three generations of one family in Kerala, South India. The book presents itself as being about how medical progress eventually explains a family curse—but the social obstacles faced by women, rooted in social norms around marriage, illness, and gender, turn out to be just as acute as any physical challenges.
The first obstacle is child marriage. The story starts with Mariamma, a 12-year-old fatherless child married off to a 40-year-old widower in Kerala in the year 1900. She goes on to become the matriarch of the family, and the book tells the story of social and scientific progress through the experiences of her children and grandchildren. (I’ll come back to Mariamma and child marriage later, with a story from my own family that shows how social norms can change.)
The second social obstacle is stigma. Midway through the book, Mariamma’s daughter-in-law, Elsie, does something almost incomprehensible. She has just given birth. She has leprosy. And she is convinced that she'll ruin her newborn’s life if she stays with her. So, she fakes a drowning death and disappears into a leprosarium, where she lives for decades, secretly watching her daughter grow up from a distance.
It's one of the more devastating turns in a very moving story. Here’s the catch, though: medically, her fear of contagion doesn't quite hold up. Hansen's disease, leprosy, isn't passed on in utero, and even after birth is relatively mildly contagious. The author is a physician by training, so this probably isn’t a case of poor research. Likely, Elsie's actions serve to highlight the oversized role that misinformation and stigma play. Nobody around Elsie corrects her, because nobody in her world would have known better. And fear is what both society and law had taught her to feel.
In 1891, the British government's Leprosy Commission was dispatched to India to assess whether the disease actually warranted forced segregation. Strikingly, it concluded that "the amount of contagion which exists is so small that it may be disregarded." Seven years later, the colonial British government passed the Lepers Act anyway, forcing institutionalization, with men and women housed separately to stop them from having children. Institutionalized segregation and stigma—particularly against women—continued well into independent India, which kept leprosy as permissible legal grounds for divorce until 2019, when the Personal Laws (Amendment) Act removed it. Still, India remains home to an estimated 700 leprosy colonies and 119 laws that continue to stigmatize people with the disease, including statutes in five states barring them from running for local office, a 1939 motor vehicles law denying them drivers’ licenses, and a 1990 railways law preventing them from buying train tickets. All of this for a disease the WHO has supplied full and free treatment for globally since 1995.
And even now, when the law has changed, researchers working in leprosy-endemic districts still find that women who have the disease are disproportionately likely to face social stigma and spousal abandonment. In many leprosy-endemic settings, marriage is a woman's only real economic security, so losing it takes everything along with it.
Of course, there’s also the gender gap in access to lifesaving treatment. Women and girls are consistently found to reach treatment later than men, partly because of restrictions on their physical mobility and limited access to financial and other resources. By the time a lot of women are formally diagnosed, the disease and disability are more severe. (These gendered patterns are not unique to leprosy. Researchers have documented similarly disproportionate social stigma and isolation experienced by HIV-positive women.)
Social norms and stigma also reinforce each other. Stigma costs a woman more precisely because norms have already limited her path. A recent report tells the story of a woman, now 75 years old, who has spent her life in leprosy colonies—despite having been cured for decades. Her family sent her away at 12 because a daughter with leprosy in the house would cost her sisters any chance at marriage. She hasn't seen them since.
Here's the part that needles me most as someone who has worked on health financing. Normally when we write about a neglected disease, we raise awareness about the size of a funding gap, and call narrowing that gap a policy win. After all, investment in neglected tropical diseases is about 0.2 percent of global biomedical research spending. Even after a post-pandemic bump, funding for neglected and poverty-related diseases in 2024 was still more than a billion dollars below its 2018 peak. So, financing for neglected diseases is indeed a hurdle to overcome.
But many of these diseases, including leprosy, have long not merely been medical problems. For instance, free multidrug therapy has reduced leprosy prevalence by more than 95 percent since the 1980s, and Novartis just renewed its donation agreement with WHO for another five years. The same is true for HIV, where antiretroviral therapy has long made it possible to live a full life with HIV. The stigma and isolation that have been inflicted upon women—not only women but especially women—who suffer from these diseases has never been about the medicine.
Today, it seems we can only talk about women’s welfare in the context of the jobs they can hold. Fine. But let’s be clear that a 12-year-old bride cannot hold a job. Neither can a woman hiding in a leprosy colony. We cannot simply ignore the politically unpalatable and overlook the well-being of those who make no measurable contributions to GDP. And even when women do contribute economically, employment doesn’t guarantee wellbeing. Research I co-authored on Ugandan women abducted in childhood by the Lord's Resistance Army finds that nearly 20 years later, they appeared well reintegrated by our standard economic measures of employment and education. But they are still substantially more likely to be depressed and stressed than their peers. A system that only measures monetary output will keep missing the people whose wellbeing it was supposed to measure.
If we really want to improve the lives of women in situations like Mariamma and Elsie, we need to reject the patriarchal norms that treat a woman's body as everyone's business but her own—dictating whether, when, and to whom she marries, and whether an illness makes her a liability. And we need to abolish the laws that keep those norms standing years after the reasoning behind them has been discredited. Child marriage costs $175 billion a year. Lost education alone costs child brides roughly 9 percent of their lifetime earnings, and each additional year that marriage is delayed increases girls’ schooling by 0.22 years and increases their odds of literacy by 5.6 percent. And yet, just 0.025 percent of foreign aid between 2015 and 2023 went to projects with ending it as their primary goal. Just like drug development needs financing, so too does norm change.
It’s also important to remember that, as sticky as they are, norms are not immutable. In the early 1900s, my great-grandmother was married off at the tender age of nine. By the age of 16, she had given birth twice. She received no formal education but went on to write well-published feminist essays. Her oldest daughter (my grandmother) was married at 17. In the interim, the Sarda Act of 1929 had raised the legal age of marriage for girls in colonial India to 14. This is the kind of law CGD research has found to shift marital timing, even if it doesn't eliminate the practice outright. And then—still in my great-grandmother’s lifetime—her granddaughter (my mother) joined the Indian Administrative Service in one of the early cohorts to permit women in its coveted ranks. My mother also married a man of her choosing—possibly the first woman in her lineage to exert such agency—at the age of 32. That is the story of remarkable social change told through the lens of my family. So, today, when all things gender-related face pushback and rollback, I remember where the women in my family have come from. The road ahead is steep. My great-grandmother's was steeper, and still, she and women like her got us here.
With thanks to Yusuke Kuwayama and Emily Schabacker for their feedback.
