Dr Sakib Burza
It’s likely you’ve never heard of visceral leishmaniasis (VL): a tropical disease also known as kala-azar or black fever. Yet, VL is a truly horrible killer that impacts many thousands of people every year.
The parasite attacks your internal organs (hence visceral), causing severe swelling of the spleen and liver, and is almost always fatal if left untreated. Eventually, the immune system runs so low, you’ll fall victim to severe anaemia and more routine infections such as pneumonia. I’ve heard patients describe it as a slow-working poison.
VL is transmitted through the bites of infected female sandflies. These tiny bloodsuckers typically breed in the cracks of sub-quality housing and the soil of nearby animal shelters, meaning that people who sleep near livestock or out in the open are the most vulnerable. It’s therefore a disease of the most marginalised in society – the very poorest of the poor – who also face hardships such as malnutrition and the HIV pandemic. They are the least prepared to fight off a disease like this.
At the start of the century, when Médecins Sans Frontières stepped up its work in finding an alternative treatment for VL, the survival rate was low. Symptoms were often mistaken for other infections like malaria, so sufferers would spend precious savings and income on ineffective treatments, based on misdiagnosis. The whole family suffered as a result. Those correctly diagnosed could expect a month-long course of expensive, painful, toxic injections, usually administered by local untrained practitioners.
In India, the watershed moment came in 2014, when the protocol for treatment changed. After a decade of making the clinical case, policymakers accepted the drug AmBisome as a safe first-line drug. VL could now be cured with a two-hour intravenous treatment, without the need for lengthy hospitalisation and all the subsequent costs for both patient and provider.
I have such a range of emotions about playing a part in this. Of course, there is huge satisfaction that we were instrumental in finding a treatment that is less toxic, less time-consuming and more accessible. There’s pride that we intervened successfully to prove this was the most appropriate treatment. Since 2014, we have helped to cure thousands of patients who would have suffered greatly.
Yet, this progress is tinged with sadness too. In the past, I would regularly find patients in the advanced stages of the disease and with severe malnutrition. Almost half of these patients were children.
Why was VL neglected for so long? Because it’s endemic to the very poorest and most vulnerable in society. They don’t offer a financial incentive to pharmaceutical companies.
But we are now on the right track. I’ve never before seen such a huge political commitment from across the spectrum, especially from the World Health Organization. To put it simply, if we don’t manage to control this disease in the next few years with all the political, financial and stakeholder support we now have, then it’s going to be hard to do it in the future.
This is our time to act.