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The disease of the 'untouchables'

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Even if it does not only affect the 'untouchables', they are the ones hit in the hardest way.

The Bihar State ranks the highest prevalence of visceral leishmanisis, better known as kala azar, together with the highest poverty rates in India, a situation that specifically affects the so-called "low castes". Mari Carmen ViÃ?±oles, MSF General Coordinator in Bihar gives a detailed account about the opening of the project aiming at providing care to patients suffering from this neglected disease.

We are finally treating the first patients. We have had to travel a long way to see this, haven't we?

"Yes. Red tape in India is really a very complicated maze and it has taken over one year, to obtain the necessary permits from the Indian authorities. But we have finally been able to see our first Kala Azar patients in Hajipur hospital in the Vaishali district. And we are happy to be able to start working because it means a huge challenge for MSF to contribute to making Kala Azar treatment more effective."

How can we help make it more effective

"First of all, using Amphotericine B in liposomal form or AmBisome", its commercial brand name, a medicine that after a long wait is already in the country. It is administered intravenously as first line treatment. Patients only have to be admitted for 10 days during which they receive the full treatment course. "However, the treatment that has been used so far, SSG (sodium stiboglucanate) administered as an intramuscular injection needs a longer treatment course, from 30 to 40 days, as per the existing protocol. In addition with AmBisome", treatment efficacy increases up to 99% compared to the previous therapy that has developed resistance in the patients. There are also fewer side effects."

How much does an Ambisome-based treatment course cost?

"Even if it can vary a little, a full treatment course with AmBisome for a child costs about 160USD. For an adult it increases to 280USD. And this is in fact a differential price offered to us by the pharmaceutical company that produces it, Gilead. In the market, if someone wants to get it in a private pharmacy the full treatment course for a child may even cost about 1600USD and about 2800USD for an adult."

Isn't it too expensive for the Indian authorities to be interested in applying it across the country, when they already have a cheaper alternative?

"Although AmBisome is more expensive than SSG, by reducing the hospitalisation time from 30 to 10 days without any doubt it also reduces considerably the cost of healthcare. However, the objective is to further reduce the treatment price as it is still too expensive. "This is one of the objectives we have set for ourselves. In addition, there is research underway that from WHO and the very DNDi (Drug for Neglected Diseases Initiative) opens the door to the hope that there will soon be first line drugs meaning shorter treatment courses and even combinations of several medicines, and not only Ambisome, contributing to reducing ever more the current prices."

By using a medicine such as this one, can its price be reduced?

"Of course. Using it, sharing the good results and making visible patients that, in addition to being part of a neglected population also suffer from a neglected disease. Amongst other organisations, internationally MSF can contribute a lot to lobbying so as to make Kala Azar treatment more accessible. For this, we need to be present where we are most needed."

How many patients can we treat monthly?

"Right now we are at the Hajipur hospital, the referral hospital for the entire district of Vaishali, with a population of two million people. The Kala Azar unit where we are working within the hospital has a capacity for 50 admissions. "During this first month, there have already been 64 admissions, 40 of them children, and half of them have already completed their treatment. Each month the number of people treated will increase, amongst other things because before the end of the year we will also provide care in three additional health centres. Moreover, we will donate AmBisome treatment as a second line treatment to other eight hospitals in different district within Bihar district. We soon expect to receive about 250 patients every month."

Do patients come directly to the hospital or do you have to go in search of them?

"This is one of the most important issues. The conditions of the roads are very precarious as this is one of the poorest areas in India. And kala azar is directly related to poverty and, I'd add, to the most abject poverty. It feeds on the so-called 'low castes', amongst whom we find the 'Musahar'. "It is the disease of the untouchable. And even if it does not only affect them, they are indeed the ones hit in the hardest way. Treating Kala Azar implies making visible health services for people who have been always been excluded. For them, good information, awareness raising and education activities within the communities with whom we work are crucial. We will soon have the staff needed for this. We face a thousand-year-old social hurdle. But we believe that we have the best treatment, which we expect will soon stop being a luxury and with which we want to treat our patients."

The dimensions in India and particularly Bihar pose enormous problems, Kala Azar being one of them. Is any other intervention in the making?

"Albeit we are implementing a Project to treat Kala Azar, we will travel across the entire area. The Medical Coordinator has just returned from West Bengal in the north because a nutritional alert amongst tea workers had been sounded. "In addition, currently we are contacting the authorities and other organisations so as to decide the type of relief to be given to the people affected by the recent floods in Bihar, the worst floods in 10 years. And we will keep on conducting exploratory missions in other States in India to see where the presence of MSF could also be relevant."