The battle against advanced HIV
No Time to Lose
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
HIV is a virus that attacks the immune system.
People with advanced HIV, also known as AIDS, have severely weakened immune systems, putting them at high risk of life-threatening infections, such as tuberculosis or pneumonia.
Worldwide, huge progress has been made in improving patients' access to safe, effective medications which suppress the virus, allowing HIV-positive people to lead full and healthy lives.
However, while the numbers of people on treatment improves, hundreds of thousands continue to lose their lives to illnesses related to advanced HIV.
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
According to UNAIDS, there are 450,000 people living with HIV in DRC, less than one per cent of the population.
The disease remains little understood by many. Compared to other countries in southern Africa, DRC is a ‘low prevalence’ country, but this also means that there is extremely low healthcare coverage for people living with HIV and intense stigmatisation of those that are. Combined, these two factors make accessing screening, treatment and care very difficult.
The personal stories behind the statistics
"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
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.
"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
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.
After 12 days at the hospital they are happy to go home.
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
Austin is getting ready to be discharged. He and his wife are carefully wrapping up their belongings in chitenjes, traditional fabrics used in Malawi. He has been diagnosed with diabetes; like being HIV positive, it is a condition he must manage for the rest of his life.
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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