World AIDS Day 2019
No Time to Lose
"Each time I tried to breathe, I struggled. I couldn’t speak. I couldn’t walk"
I come from Chitomeni Village and I am a fisherman. During one of my usual fishing errands, I was having trouble breathing. I had chest pain. When I realised that my health was deteriorating, I went to Ndamera Health Centre.
At the health centre, the staff said I wasn’t well. When they asked me if I had been tested for HIV and other diseases, I said no. They said I should have some tests so that they could know what was bothering me. I was found to have two conditions: I was HIV positive and had tuberculosis. I was told that I needed to be referred to the district hospital.
Thompson Maferano MSF nurse putting Manfred on an Oxygen Concentrator at Nsanje District Hospital. ©Isabel Corthier/MSF
Thompson Maferano MSF nurse putting Manfred on an Oxygen Concentrator at Nsanje District Hospital. ©Isabel Corthier/MSF
An ambulance took me to Nsanje District Hospital, where I stayed for almost two weeks. During that time, my health improved. The pain all over my body disappeared. I was discharged to go back to Chitomeni, where I fish. But after nearly nine days, my condition started to worsen again. Each time I tried to breathe, I struggled. I couldn’t speak. I couldn’t walk. Even drinking a cup of water was a struggle. I was coughing a lot and I couldn’t breathe. I couldn’t even lift my leg or walk.
I told my colleague, Joe, at the fishing dock: ‘Joe, I can’t breathe. When I was discharged, I was fine but now I can’t breathe. Please find a bicycle and take me to the health facility’.
Manfred being helped to go to the Ndamera Health Centre while some of his friends are seeing him off. ©Isabel Corthier/MSF
Manfred being helped to go to the Ndamera Health Centre while some of his friends are seeing him off. ©Isabel Corthier/MSF
It’s a long way to the health centre, almost two hours by bicycle and on foot.
At Ndamera, after assessments, an ambulance took me back to Nsanje District Hospital. Now that I’m here, I am feeling better. I am able to breathe and speak.
I’ve been here for three days. My health has improved. I am now able to wash my clothes. I can wash myself. Of course, I am not totally healed; I still struggle to breathe but what MSF is doing in collaboration with government is commendable.
Manfred
Soon after this interview Manfred’s condition deteriorated. In the beginning of November, he sadly passed away at Nsanje District Hospital.
Manfred is being welcomed by Mr. Zimba, secretary of the committee at the port where Manfred conducts his fishing. He is one of those who supported him to go to the hospital. ©Isabel Corthier/MSF
Manfred is being welcomed by Mr. Zimba, secretary of the committee at the port where Manfred conducts his fishing. He is one of those who supported him to go to the hospital. ©Isabel Corthier/MSF
Despite having taken huge steps to reduce the prevalence of HIV and the numbers of people dying from it, many people in Malawi still get sick and develop advanced HIV.
But a new model of care could help communities spot the symptoms of HIV and speed up the referral process, so that HIV positive patients receive care quickly and effectively.
Different medications a person living with HIV may take every day. Upper-left picture shows a first line treatment. Upper-right is a second-line treatment for patients who do not respond to first-line treatment. Bottom-left is a third-line treatment for patients who do not respond to first- and second-line treatments. Bottom-right is a dolutegravir pill, a new molecule that suppresses viral load much faster than others. ©Pablo Garrigos/MSF
Different medications a person living with HIV may take every day. Upper-left picture shows a first line treatment. Upper-right is a second-line treatment for patients who do not respond to first-line treatment. Bottom-left is a third-line treatment for patients who do not respond to first- and second-line treatments. Bottom-right is a dolutegravir pill, a new molecule that suppresses viral load much faster than others. ©Pablo Garrigos/MSF
Empowering patients to reach an HIV-free Malawi
About 300,000 people live in Nsanje district, in southern Malawi, on the border with Mozambique. According to government estimates 12.5 per cent of them, around 24-25,000 people, are HIV positive. This is significantly higher than the national average of 9.2 per cent. Outside the only public hospital in the district there is a steady flow of people seeking care.
In October 2019, Austin was brought in by ambulance and admitted to the Nsanje District Hospital. He had lost a lot of weight loss and was frequently urinating. He had tested positive for HIV in 2016 and had been receiving antiretroviral (ARV) treatment even since, apart from a three month period when he was arguing with his wife and stopped taking his medication. A decision that had immediate consequences.
“I quarrelled with my wife; I told her it would be better for me to die. I stopped taking my medication for three months and soon got worse,” he remembers.
Situations like Austin’s are common. Since MSF began working in Malawi, it have noticed that people fail to maintain their ARV treatment programmes for several reasons.
Obert Symon, an MoH Medical Assistant Mentee and MSF Clinical Officer Mentor Christopher Banda, conducting a full physical examination on Austin together at Ndamera Health Centre, Nsanje District. ©Isabel Corthier/MSF
Obert Symon, an MoH Medical Assistant Mentee and MSF Clinical Officer Mentor Christopher Banda, conducting a full physical examination on Austin together at Ndamera Health Centre, Nsanje District. ©Isabel Corthier/MSF
“Some believe that it is better to go and seek help from a traditional healer,” says Brains Kamanula, who works with psychosocial support and mentorship at Nsanje District Hospital.
Other issues are to do with distance and economic challenges. The nearest health facility can be far away and the transportation to get there can be expensive. Instead of going to the hospital, many have to prioritise working to survive and support their families.
People also lack basic knowledge about the warning signs of HIV. Even though MSF has health promoters that go to communities to raise awareness about danger signs, we can’t reach everyone.
In the end, by the time they come to the hospital, many people are already very sick.
Brains Kamanula
Late presentation
Malawi has long struggled with a high prevalence of HIV, and HIV/AIDS remains the most common cause of death, with an estimated 13,000 AIDS-related deaths a year.
In recent years huge investments has been made by the Global Fund and Pepfar to manage and reduce the number of people with HIV and to reach the UNAIDS 90-90-90 target by 2020.
This target commits a country to ensuring that 90 per cent of people living with HIV will know their HIV status, 90 per cent of people with a diagnosed HIV infection will receive sustained ARV therapy, and 90 per cent of people receiving ARV therapy will have viral suppression.
However, lately the progress in decreasing the number of HIV-related deaths has stagnated. In an effort to improve care for people with advanced HIV[1] in Nsanje district, MSF and the Ministry of Health have established a new operating model called the ‘circle of care’.
The circle of care model aims to reduce mortality among HIV patients through early detection and strengthening the referral system within the circle, e.g. the community, health centre and hospital. This is achieved by enabling communities to identify sick patients, ensuring efficient diagnosis and initiation in the health centres, and in-depth assessment and quality care in the district hospital.
Jomah Kollie, Medical Team Leader for the Nsanje project
When a patient arrives at the Nsanje District Hospital, they are brought to the rapid assessment unit where they can be quickly stabilised and assessed. Once this is done, the patient can be put on the right treatment and admitted to the ward.
[1] The World Health Organization defines Advanced HIV as patients with a CD4 cell count below 200 cells/mm3, or a WHO clinical stage 3 or 4, or all children under the age of five at the presentation of care.
Lita
Suwali, Nsanje
Micheal Tambala, MSF Clinical Officer assisting Lita to go to Rapid Assessment Unit for physical and other examination at Nsanje District Hospital. ©Isabel Corthier/MSF
Micheal Tambala, MSF Clinical Officer assisting Lita to go to Rapid Assessment Unit for physical and other examination at Nsanje District Hospital. ©Isabel Corthier/MSF
"I was really devastated. She is my first-born child. She made me a father and defines who I am"
Lita is sitting with her parents in the shade outside the female ward at Nsanje District Hospital.
For her it all started when she wasn’t feeling well at the beginning of the year. Her family brought her to the hospital where she tested positive for HIV.
"When we heard about the results, the first thing we had to do was learn to accept it," says Lita's father Gerrald.
"She was advised to start taking antiretroviral drugs immediately. But when she was discharged, she went back to her husband and, unfortunately, stopped taking the medication. As a result, she started getting sick again."
"I was really devastated. She is my first-born child. She made me a father and defines who I am."
Benson Msiska MSF clinical mentor examining Lita at Nsanje District Hospital. ©Isabel Corthier/MSF
Benson Msiska MSF clinical mentor examining Lita at Nsanje District Hospital. ©Isabel Corthier/MSF
Lita was re-admitted to Nsanje District Hospital in October with fever, bloated stomach and leg swelling. This time, her father is determined to make sure his daughter follows her treatment programme.
“It will not happen again, as I will be around,” says her father Gerrald. “I will be there making sure that when she is wakes up, I am there and she takes her drugs. The same with the evening dose, I will make sure that before she goes to sleep, she has taken her drugs.”
Not many days ago, Lita was unable to walk without support. Now she is feeling better, but she misses the food back home and her three-year-old daughter.
Nelson Chidanti, MSF Clinical Mentor assisting Lit on wheel chair on her way to Rapid Assessment Unit (RAU) at Nsanje District Hospital. ©Isabel Corthier/MSF
Nelson Chidanti, MSF Clinical Mentor assisting Lit on wheel chair on her way to Rapid Assessment Unit (RAU) at Nsanje District Hospital. ©Isabel Corthier/MSF
Lita and her husband are separated now. He left her the moment she started getting sick. He abandoned her. Together they had three children, but the eldest and the third-born passed away. In fact, the third-born child passed away in September this year. The second-born, who is three years old, is alive.
The next step for Gerrald is to get his granddaughter tested as well.
“I want to bring her here for testing so that we get to know her status – if she is HIV positive or negative.”
"When Lita is discharged, I will make sure that she doesn’t have to do any heavy household chores. I will provide all the necessary support and love," says Gerrald.
Working in the community
The circle of care starts at the community level. Here MSF community health workers work with the traditional authorities, patient groups and local associations to reinforce existing community structures and identify those who are sick and need more care, while creating community awareness of symptoms and danger signs.
“Previously, most HIV/TB activities were done at a health facility level and not much in the communities. As a result, people who defaulted had no proper follow up,” explains Moses Luhanga, information and education manager.
When someone is flagged as requiring further treatment, they are then referred to a nearby health centre. Here MSF, working with the Ministry of Health, has instituted a package of care which begins with a very quick assessment and some tests; CrAG for cryptococcal meningitis, CD4 count and a test of blood sugar levels and urine. Once it is established that the patient has a condition requiring advanced management, they are referred to the district hospital.
Some of the members of the support group at Ndamera Health Centre in Nsanje district going through some educational brochures provided by MSF health promoters. ©Isabel Corthier/MSF
Some of the members of the support group at Ndamera Health Centre in Nsanje district going through some educational brochures provided by MSF health promoters. ©Isabel Corthier/MSF
NDH ART waiting area – during mother infant pair clinic. ©Isabel Corthier/MSF
NDH ART waiting area – during mother infant pair clinic. ©Isabel Corthier/MSF
"I want to be the voice of the change in my community"
Austin is saying goodbye while his wife looks on. ©Isabel Corthier/MSF
Austin is saying goodbye while his wife looks on. ©Isabel Corthier/MSF
Austin and his wife Patuma at their home. ©Isabel Corthier/MSF
Austin and his wife Patuma at their home. ©Isabel Corthier/MSF
Back at the hospital, Austin is getting ready to be discharged. He and his wife are carefully wrapping up their belongings in chitenjes, traditional fabrics used in Malawi. After 12 days at the hospital they are happy to go home. He has been diagnosed with diabetes; like being HIV positive, it is a condition he must manage for the rest of his life.
District Hospital health worker assisting Austin on wheel chair at Nsanje district hospital. ©Isabel Corthier/MSF
District Hospital health worker assisting Austin on wheel chair at Nsanje district hospital. ©Isabel Corthier/MSF
To make sure Austin and all the other HIV positive patients being discharged stick to their treatment programmes and don’t fall back in the circle of advanced HIV, MSF have a post-discharged procedure where counsellors will go and visit them.
Although Nsanje district is close to meeting the 90-90-90 targets, the next challenge will be to make sure people on HIV medication continue their treatment and receive quality care when falling sick. But getting people to know their status, and start the treatment, is a step in the right direction.
Before the circle of care was implemented in the district, statistics from Nsanje district hospital indicated that 27 per cent of people entering the hospital with advanced HIV would die. But since the implementation of the system, there has been a gradual reduction in the mortality rate of hospitalized patients with advanced HIV; over the last year the mortality rate is under 15 per cent.
For people like Austin, getting the care he needed not only made him well, it also inspired him to make sure other people who are HIV positive get to know their status, and then start and stay on the life-saving treatment.
I want to be the voice of the change in my community. I want to find people that are suffering from HIV and change this community to be disease-free. After being looked after, I cannot just stand here while someone is suffering.
Austin
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