Feature story |

HIV-kala azar co-infection stories

Photograph by Vaishnavi Singh
Zoya, who has been treated for kala azar-HIV co-infection and tuberculosis at MSF's ward in Patna, Bihar is one of the many patients navigating the social stigma that is associated with the diseases in the social context of Bihar.

Treating HIV-kala azar co-infection in India and Ethiopia

Kala azar (also known as visceral leishmaniasis) is the second largest parasitic killer after malaria, which makes it one of the most dangerous neglected tropical diseases in the world. It is spread to humans by bites from infected female sandflies and attacks the immune system. Every year, it infects between 200,000 and 400,000 people mostly in Asia, East Africa and South America, and around 50,000 die because of it.

HIV can prevent patients from being fully cured of kala azar, exposing them to the risk of relapse. To make things more complicated, kala azar and HIV co-infection is disastrous because both conditions weaken the immune system and reinforce each other, leaving a person vulnerable to other opportunistic diseases like TB, malaria and dysentery.

Ethiopia: Diagnosing, treating and researching HIV-Kala Azar co-infection

Kasaye sits on his bed in the intensive care unit of the MSF health centre in Abdurafi, a bottle of soda and some cookies in his hands. He looks incredibly frail and the simple acts of drinking and eating seem to require immense effort. “This is the thirteenth time that I have come to MSF for Kala Azar treatment. I was first diagnosed with the disease in 2002. I received treatment and the symptoms disappeared. I thought that I was cured,” he says.

Disastrous co-infection

Usually, once treated, patients become immune to the parasite. However, this was not the case for Kasaye who, one year later, was diagnosed with HIV. HIV can prevent patients from being fully cured of Kala Aza, exposing them to the risk of relapse.

To make things more complicated, Kala Azar and HIV co-infection are disastrous because both conditions weaken the immune system and reinforce each other. This leaves a person vulnerable to other opportunistic diseases like tuberculosis, malaria and dysentery. Ethiopia has a very high number of co-infected patients, with 20 to 40 percent of Kala Azar cases occurring in people living with HIV.

Kasaye, 55, is a secondary kala azar patient with HIV co-infection. Over the past 16 years, he has had 13 recurrences of the disease, all of which have been treated by MSF first in Humera and then in Abdurafi, Ethiopia 2018.
Kasaye, 55, is a secondary kala azar patient with HIV co-infection. Over the past 16 years, he has had 13 recurrences of the disease, all of which have been treated by MSF first in Humera and then in Abdurafi. Photograph by Gabriele François Casini.

Vicious cycle of poor living conditions

“During the years, I suffered from 12 other Kala Azar infections and the time between relapses is becoming shorter”, Kasaye says. “I came to Amhara from Tigray as a migrant farm worker but Kala Azar has made me weak and I can’t work in the fields anymore. Now I live in the streets and I have no choice but to beg for money.”

Economic status seems to be a determining factor when it comes to Kala Azar relapse in HIV co-infected patients, as people in poor living conditions are more exposed to sandflies – the carrier of the parasite - and are further debilitated by the lack of food.

“Kala Azar is endemic in the Abdurafi area and that’s why we decided to set up our intervention here,” says Dr. Ernest Nshimiyimana, medical team leader for the Abdurafi project. “In addition to providing treatment for Kala Azar  and HIV, we also run a state of the art laboratory for the diagnosis of visceral leishmaniasis.”

Dr Ernest Nshimiyimana, MSF medical team leader, visits kala azar patients in the kala azar ward of the Abdurafi health centre, Ethiopia 2018.
Dr Ernest Nshimiyimana, MSF medical team leader, visits kala azar patients in the kala azar ward of the Abdurafi health centre. Photograph by Gabriele François Casini.

Difficult diagnosis

Diagnosing Kala Azar  is complicated. Rapid diagnostic tests are the tool available in most health facilities, but they are reliable only with patients infected by Kala Azar  for the first time (a condition called primary Kala Azar ).

“The MSF clinic in Abdurafi is one of the few places in Ethiopia where the presence of active Kala Azar parasites in a patient’s body can be accurately diagnosed”, says Dr. Ernest. “To determine whether a patient is cured or not, or to diagnose Kala Azar in suspected relapse cases, a spleen or bone marrow biopsy is required. To analyse these samples, you need a specialised lab and here we have all the equipment we need.”

MSF staff performing a bone marrow biopsy on a suspected kala azar relapse patient. Bone marrow or spleen tissue laboratory analyses are the only accurate ways to determine the presence of kala azar in a suspected relapse patient. Ethiopia 2018.
To determine whether a patient is cured or not, or to diagnose kala azar in suspected relapse cases, a spleen or bone marrow biopsy is required. To analyze these samples, a specialized lab is needed. Photograph by Gabriele François Casini.

The importance of this lab is significant. Mortality rates are up to 14 times higher in HIV co-infected and relapse patients. Therefore, a timely diagnosis is instrumental in saving lives.

“The majority of health facilities in the country do not have the tools or the expertise to perform many of the tests that we can do here. Some of them can also be very expensive, but MSF in Abdurafi offers all tests free of charge”, says Mercy Oluya, MSF lab manager. “We brought in experienced lab technicians and all the necessary equipment. We are also training the Bureau of Health staff that share the lab with us and perform all the other routine tests for our patients.”

MSF lab manager Mercy Oluya performs a kala azar diagnostic test in the MSF laboratory in Abdurafi, Ethiopia 2018.
MSF lab manager Mercy Oluya performs a kala azar diagnostic test in the MSF laboratory in Abdurafi. Photograph by Gabriele François Casini.

Research into understanding and prevention

The lab is also used to study the prevalence and incidence of Kala Azar  in HIV patients in partnership with the Institute of Tropical Medicine Antwerp (ITM), the University of Gondar and the Ethiopian Regional Health Bureau in Amhara. Research began in October 2017 and will run for four years. Aderaju Kibret is MSF’s medical research manager and is responsible for the recruitment of patients for this study, as well as for the monitoring of their condition.

“We are especially looking for people living with HV who develop kala azar even if they are on antiretroviral therapy. Here in Ethiopia, we have quite a few cases”, says Aderaju. “We monitor patients for a minimum of three months and for up to two years. The aim of the study is improving our understanding of the disease and developing better prevention methods”.

Only a few institutes or pharmaceutical companies are investing time and money into kala azar research, with the consequence that very few new drug treatments are being developed. Kala Azar primarily affects people who cannot afford to pay for the drugs, thus representing an unattractive market for drug companies. Kasaye is one of the currently 325 patients enrolled in the study. “I know many people who have Kala Azar and I have first-hand experience of how it can affect a person’s life”, Kasaye says. “I want to contribute to the elimination of the disease in Ethiopia.”

Aderaju Kibret, MSF medical research manager, and Dr Saskia van Henten, Antwerp Institute of Tropical Medicine’s (ITM) scientific collaborator, perform a routine check on Kasaye, a kala azar/HIV co-infected patient in Ethiopia, 2018.
“We monitor patients for a minimum of three months and up to two years. The aim of the study is improving our understanding of the disease and developing better prevention methods,” says Aderaju. Photograph by Gabriele François Casini.

MSF has been providing up-to-date screening and treatment for complicated kala azar co-infected patients with HIV AIDS and/or TB in the Amhara Region of Ethiopia since 1997. The Abdurafi project also offers treatment for snakebites – another neglected tropical disease - and provides support to emergency referrals.

About the study

PreLeisH (Predicting Visceral Leishmaniasis in HIV Infected Patients) is an observational prospective cohort study launched on 11 October 2017 in Abdurafi. The study investigates the asymptomatic period preceding the onset of active visceral leishmaniasis (VL) in over 1000 HIV‐infected patients over a period of 4 years, as an avenue to develop an evidence‐based screen and treat strategy to prevent progression to active VL.

PreLeisH is implemented in a collaboration between MSF, the Institute of Tropical Medicine Antwerp (ITM), the University of Gondar and the Ethiopian Regional Health Bureau in Amhara. The unique context in the north-western Ethiopian lowlands of a very high HIV/VL co-infection rate provides unique opportunities for research on management of HIV/VL. MSF is the only actor in the region with access to patients as well as the capacity to do clinical research.

In the absence of alternative research possibilities in South Sudan (due to insecurity) Abdurafi has developed into a unique centre of excellence for HIV/VL treatment and, over the last few years, MSF has established effective research collaborations with ITM, DNDi and the University of Gondar. Over the past 17 years, MSF has carried out 10 Kala Azar studies in the Amhara Region of Ethiopia, mainly focusing on HIV/VL co-infection. The impact of these studies has been substantial. They have resulted in policy changes at the national and international level and have driven WHO recommendations and international research agendas.

India: "I have returned from the brink of death"

After treating over 12,000 kala azar patients in Bihar, northeast India, MSF launched activities to treat people co-infected with kala azar and HIV in 2017. Over 700 people have received treatment since the project opened.

As well as suffering a lack of awareness and social stigma, kala azar-HIV co-infected patients are also prone to other infections, relapse more often and are at a greater risk of death.

Zoya, who has been treated for kala azar-HIV co-infection and tuberculosis at MSF's ward in Patna, Bihar is one of the many patients navigating the social stigma that is associated with the diseases in the social context of Bihar. India 2018.
Zoya is one of the many patients navigating the social stigma that is associated with HIV-kala azar co-infection in Bihar. Photography by Vaishnavi Singh.

Zoya, 39, shares her story of recovery after being treated for kala azar and HIV at MSF’s ward in Patna, Bihar.

"It started with a fever. I went from hospital to hospital, but the fever would always return. I felt weak, unable to work, and lost my appetite. Nothing tasted good anymore, even rice and bread. Even simple household chores – like washing the dishes - felt too difficult. Finally, a doctor in Siwan district hospital told me I had kala azar.

"They referred me to a hospital in Goriakothi (a constituency in Bihar state), where I tested positive for HIV. My husband tested positive as well. By the time I understood what all of this meant, I had already spent so much money: fifty thousand rupees (around 690 US dollars).

"After a decade living in Nasik city with my husband, we moved back to Bihar because we had financial difficulties. My husband is a tailor but after becoming sick with jaundice he was never the same again. We were unemployed and continued to struggle for money, even after returning to our village in Bihar. This is when I learnt about my illness.

"An MSF health worker I met in hospital convinced me to travel to Patna, where I could get treated for free in a special ward run by MSF. He told me to pack some clothes and leave right away. After I arrived at the hospital, they tested me again. This time I tested positive for tuberculosis as well. I barely had the physical strength to stand, let alone understand how I had not one, but three potentially fatal diseases.

"The doctors at MSF treated me with love. One of the MSF doctors would hold my hand and say, 'Zoya, if you do not eat well, you will not get better!' My appetite returned slowly, and I was able to move and walk around without feeling faint. I gained all the weight I had lost in the previous months.

Zoya, who has been treated for kala azar-HIV co-infection and tuberculosis at MSF's ward in Patna, Bihar is one of the many patients navigating the social stigma that is associated with the diseases in the social context of Bihar. India 2018
"Before, when I was running from hospital to hospital, people would not even talk to me properly. They would shout at me to go stand in a corner. But at the MSF ward, everyone treated me and my husband well,' says Zoya. Photograph by Vaishnavi Singh.

"During my stay with MSF, I learnt about how the three diseases spread and how to take care of myself. I was treated for kala azar and tuberculosis and put on antiretroviral medication for HIV. Upon my discharge I returned home and found out that everyone in the village knew about my illness. A government health worker who had accompanied me to Goriakothi had told everyone that I was not going to survive because I had AIDS. I realised why none of my relatives had visited me during my stay in Patna. My family, my neighbours, everyone in the village knew about my illness now.

"We live in a two-storey house with my extended family. When I first came home from hospital, my relatives would clean and throw water on the places I’d been; no one used the bathroom I did, everyone looked down on me. In the beginning, I was not invited to weddings in the village.

"I was angry for a long time. Was this my fault? If I was ill, why was it anyone else’s business? I would sit up at night and wonder about my children’s futures. Who would marry my daughter? I know if I take precautions and continue my medication I can live a normal life, but I still worry. I worry over every cough, every cut and over the menstrual blood stains on my clothes. I wake up when my daughter sleeps next to me wondering, what if somehow my illness affects her too? As a parent, you never stop worrying.

"My husband has been by my side throughout all of this; he and my children are all I have. I have returned from the brink of death and now have the courage to continue.”