‘Bloodbath childhood’ is what I got in India. Haemophilia needs Modi govt’s attention

Imagine a disability nearly disappearing if you flew out of India to a high-income country. Haemophilia, a genetic bleeding disorder, is such a disability. It messes up the blood’s ability to clot. Depending on the severity, anything—from a cut to simply sitting for a long time—can trigger a bleed. Anti-clotting injections can stop this. But, in much of the world it is out of reach for most families.

My haemophilia was diagnosed as severe, so childhood was quite a bloodbath. Every time I lost a tooth (or grew a new one, or bit something too hard), it would bleed for days (and nights). Every single pillow cover in my room was blood-stained. Once, aged 10, I started gulping the blood thinking it’d re-enter the stream. Three days later, I collapsed unconscious on a relative’s dinner table. They rushed me to the closest hospital where the doctor refused to risk offering any help to someone with haemophilia. Several doctors and surgeons would repeat his excuse throughout my life: “what if he bleeds to death?”.

People with severe haemophilia almost always have bleeding joints—ankles, shoulders and knees being the most vulnerable. You don’t even need an injury. Just walking or sitting can trigger a bleed. When my ankle joints bled, my mother buried it under lots of ice. The cold would freeze the muscle, contract the veins, and therefore reduce the bleeding. We did the same for my left knee—which bled so many times that the bones literally crumbled. Eventually, after I moved out of India, I got my knee replaced with a steel one. Without that, I’d be crawling. Most people with haemophilia in India, indeed, are crawling. By the time they reach youth, their joints are completely devastated.

There’s an easy solution to bleeding: inject clotting factors. In fact, the World Health Organization recommends that these factors are given every week—bleeding or no bleeding. In India, what WHO recommends as “standard care” is outside of people’s imagination. Anti-clotting factors in India cost around ₹10000 per injection. Many bleeds require at least 3 of those. As you can imagine, much of India simply cannot afford this without leaping into poverty. So the other option is to simply wait until the bleeding stops. Unless the episode is threatening your life immediately, you wait in pain. That relief from pain depends on how much wage you make should shock us. Especially when wage-giving jobs shut doors to people with haemophilia. During a bleed, everything shuts—school, play, work, life.

At age 31, I moved to the U.K, where I now live. For the first time in my life, I had free access to “standard care”. Now I inject clotting factors to prevent bleeding, and not just treat acute bleeds. I can now, literally for the first time in my life. Disability, my experience shows, isn’t a fixed object. It is constructed by several things. This includes accessible treatments, institutions that care, inclusive cultures, and economics that pursue health over profit. It is the gap that these processes leave that determines the degree of your disability. The gap in India, especially with haemophilia, is Himalayan. A study showed that out of 148 patients with severe haemophilia A, only nine were free of disability. 36.5% of them discontinued education because of their illness. This study was conducted in urban centers. Imagine what life holds in the countryside.

Unaddressed suffering is not really unaddressed. It is picked up by families, and unpaid and underpaid healthcare workers. Gender roles make sure that this unending supply of care work continues as a cheap substitute. Women and girls do more than 75% of the world’s unpaid care work—much of it related to health. In my case, my mother burdened care that the government was constitutionally obliged to do. She spent so many nights laying awake, watching me quiver in pain and trying to help. It crushed her body and heart. If this was the case for my mother—a middle-class woman in urban India—can you imagine the horror in our countryside?

Once, when my ex-partner’s parents learned about my condition, they threatened to kill themselves if we ever got married. They were saving their child from torment, they said. Unfortunately, there are facts about our society that render this ableist belief eerily rational. Repeated bleeds demolish the joints and organs while also inflicting unimaginable pain. Most spaces don’t make room for those with difficulty walking. Public transportation is a recipe for fresh bleeds in India and the only other option is an expensive private commute. Recruiters disqualify you the moment they hear about the condition. Insurance is only for those without pre-existing conditions. Every now and then, a few government hospitals ration out anti-clotting for those who are collapsing or have the cash to bribe. When I lived in Pune, the closest hospital to me was 70 miles away. If, after lots of ice and painkillers and very little sleep, I wasn’t still okay, my partner and I would rent a car to go try our luck. Those memories of biting my lips each time the car bumped are one of the most disturbing moments of my life. Sometimes, we’d fail to make the case and take that same bumpy ride home.

The horror has to stop. Governments are instrumental. Their legitimacy comes from how they organize how goods are arranged and distributed. It is because these goods are important that markets are considered an economic arrangement. The good in question is health. And that calls for quite a severe assessment of whether the instrument is fulfilling its aim. The right to health comes alongside human birth. Without it, the body cannot even risk the pursuit of physical, social or spiritual flourishing. It is what water is to the plant.

Three things are long-pending. First, the Indian government must intervene and control prices. Clotting injections are inhumanely expensive when available. So the choice is between paying rates that push families into poverty or watching bleeding eat away your ability to move around. People—families—would do anything to save a bleeding child and so many people indeed do get indebted for generations. Second, increase diagnosis. 80% of haemophilia cases are undiagnosed. I know someone who was being treated for everything from tuberculosis to an afflicted Saturn in their horoscope. By the time they figured out what it actually was, his entire leg had to be amputated. Genetic testing can tell mothers what’s coming so they make an informed choice. Unfortunately, misogyny makes this very hard. Families blame women for “carrying” the disease. Dianosis, therefore, must be accompanied with public education and cultural sensitivity. Third, every government hospital must compulsarily dispenses clotting injections to everyone who comes with an episode of bleeding. If you don’t arrest an active bleed, it has repercussions for life—increased hospitalization, reduced mobility and other complications. It, therefore, makes even financial sense to invest in increased access to haemophilia treatment. More than that, however, no medical institution should ignore the most basic moral expectation that everyone has, from a child to an adult—the expectation that my pain will be relieved.