Like the Hindu deity Krishna, I was born with blue skin. My body bruised at the trauma of simply being held. And so the family arranged for a ritual to appease the gods. Haemophilia is a genetic blood disorder that makes it very hard for the body to stop bleeding. If your haemophilia is severe like mine, you bleed spontaneously, without an injury or known cause. A handshake once took me to A&E.
To stop bleeding, you need clotting injections. In much of the developing world, these injections are available only to the chosen few. Multinational corporations, such as Pfizer and Baxter, make money selling drugs at high prices in low-income countries.
In India, clotting injections cost £100 or more for one (and one is never enough). With the near absence of a welfare state, you can understand why my family requested divine intervention when I was born.
It is impossible to think of a time in India when I was not in pain. Prolonged episodes of pain might have been the cause of my ADHD. I would wake up with a mouth filled with knots of blood and a pillow drenched in dark red. When bleeds happened internally – such as inside my shoulder, elbow, stomach, tongue or other muscle – they were unimaginably painful. I’d wail at night; it felt as if something alive was burning through my flesh.
Episodes would last for weeks. I’ve hallucinated entire conversations because I hadn’t slept for days or had taken too many painkillers.
Haemophilia loved my left knee. It bled so much that it started to look like a lollipop; the joint filled with blood, and the thigh and calf muscles wasted. Schoolteachers would show it to visitors. Repeated bleeding corroded the knee, making it hard to move, which weakened the muscle, making it even more vulnerable to bleeding. You’re trapped – watching your mobility decline. If you need a job or an admission into a school, you lie about it then leave and get another job before they realise.
I remember one new year when a bleed began in my ankle. My family took turns to hold crushed ice around the swelling as fireworks burst and the night turned into day. They froze my flesh so it wasn’t possible to bleed. But that was rare. It never happened again.
In the advanced west, you don’t need miracles. Clotting injections are free. You take them every two or three days and go about a relatively normal life. It’s called prophylactic treatment. This is so mainstream here in the UK that you would come across researchers sometimes needing to update old literature on haemophilia “to the post-prophylactic era”. However, only a tiny percentage of haemophiliacs on the planet live in that era. Most of the world is still in the dark ages.
The suffering caused by inequities in health also reverberates into other injustices. For example, care that is not provided by health services is often provided by women. In my case, my mother washed the bloodstained pillowcases. She stayed overnight to make sure I did not move my bleeding elbow. She took the patriarchal blame for spreading the disease. She built up her savings so we would have money for emergency injections.
Once I moved to the promised land, the NHS put me on prophylactic treatment. I awoke to a completely different mode of living. For the first time, I walked more than 100 yards without pain. The contrast was such it made me feel guilty. My family’s story is nowhere near the tragedy that most others face. Among urban and rural poor in low-income countries, haemophilia is death. The pain and the loss of mobility preventers from doing anything. It plunges the entire family into overworking and debt. The cost of treatment is beyond their reach and the governments are too market-friendly to care.
If this is not apartheid among countries – and among classes within countries – then what is it? I remember queueing with my family for date-expired injections that corporations or charities had donated to India (I had to be taken to the queues to show them I was suffering). Many times we left empty-handed, always feeling emptied of dignity.
Medical interventions are social necessities because they preserve human agency and dignity. They are beyond commodities to be traded for profit or given away as charity. What kind of a moral universe do we inhabit that this point even needs to be made?
Planning a trip home last year, I asked my uncle (also a haemophiliac) what he wanted from London. He asked for some clotting injections. When I met him to hand over his gift, his mouth was filled with blood and his tongue was swollen blue; yet, he kept the injections aside for an episode truly worthy of treatment.
Sign up for a different view with our Global Dispatch newsletter – a roundup of our top stories from around the world, recommended reads, and thoughts from our team on key development and human rights issues, delivered to your inbox every two weeks: