Imagine a disability nearly disappearing if you flew out of India to a high-income country. Haemophilia, a genetic bleeding disorder, is one such disability. It interferes with 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, they are out of reach for most families.
I was diagnosed with severe haemophilia, so my 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, at the age of 10, I started gulping down 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 helping someone with haemophilia. Several doctors and surgeons would repeat this 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. Whenever my ankle joints bled, my mother buried them 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 around it literally crumbled. Eventually, after I moved out of India, I got my knee replaced with a steel structure. 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 caused by haemophilia: Inject clotting factors. In fact, the World Health Organization recommends that these factors are administered every week—bleeding or no bleeding. In India, what the WHO recommends as “standard care” is outside of people’s imagination. Anti-clotting factors in India cost around ₹10,000 per injection. Many bleeds require at least three 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. And given how people afflicted with haemophilia are often denied jobs, the suffering should shock us further. During a bleed, everything shuts down — school, play, work, life.
Also read: Climate change, salinity and menstrual health problems: Sundarbans women battle triple whammy
Taking up ‘unaddressed suffering’
At 31, I moved to the UK. 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. Disability, my experience shows, is influenced by several factors, including accessible treatments, institutions, inclusive cultures, and economic policies that pursue health over profit. It is the gap that these processes leave that determines the degree of your disability. In India, especially for people with haemophilia, the gap is of Himalayan proportions. A study by the National Library of Medicine, US, showed that out of 148 patients with severe haemophilia A, only nine were free of disability and 36.5 per cent of them discontinued education because of their illness. This study was conducted in urban areas. 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 per cent of the world’s unpaid care work—much of it related to health. In my case, my mother burdened care work that a government is 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 for those who lack even basic amenities?
When my ex-partner’s parents learnt 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 lack adequate 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. Where I lived in Pune, the closest hospital was 70 miles away. If, after lots of ice and painkillers and very little sleep, I still wasn’t okay, my partner and I would rent a car to 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.
Also read: India’s first vaccine producers weren’t labs. They were children, cows, buffaloes, goats
What Indian govt must do
The horror has to stop. Governments are instrumental in determining how people with disabilities live. Their legitimacy comes from how they organise goods and distribute them for public welfare within an economic setting. The good in question is health. And that calls for a thorough assessment of whether the government is fulfilling its aim. The right to health comes alongside 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 Narendra Modi government must intervene and control the prices of essential medicines and supplies. Clotting injections are inhumanely expensive. The choice for poor families is to either pay amounts that push them further into poverty or watch bleeding eat away the ability of the patient to move around. Naturally, families would do anything to save a bleeding child, and so many people indeed do get indebted for generations.
Second, increase diagnosis. In India, 80 per cent 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 his family figured out what it actually was, his entire leg had to be amputated. Genetic testing can tell mothers what’s coming, so they can make an informed choice. Unfortunately, misogyny makes this very hard. Families blame women for “carrying” the disease. Diagnosis, therefore, must be accompanied by public education and cultural sensitivity.
Third, every government hospital must compulsorily dispense clotting injections to everyone who comes with an episode of bleeding. If you don’t arrest an active bleed, it will have repercussions for life — increased hospitalisation, reduced mobility and other complications. It, therefore, makes it financially sound 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—that my pain will be relieved.
Tarun Gidwani is a PhD student in philosophy at King’s College London. He is also a political activist and writer; engaging with issues concerning climate justice, access to healthcare, and disability rights. He tweets @GidwaniTarun. Views are personal.
(Edited by Humra Laeeq)