Sandra Smiley/MSFAngelina* is one of the people in Mozambique living with HIV, she also suffers from Kaposi’s sarcoma, a type of cancer related to her condition, that causes painful and disfiguring lesions on the skin.
In Mozambique, the fight against HIV/AIDS is being fought every day: about 11.5% of people in the coastal southern African country are living with the virus. Many of them suffer from complications related to their condition, such as Kaposi’s sarcoma, a type of cancer that causes painful and disfiguring lesions on the skin. In Maputo, the country’s capital, Médecins Sans Frontières (MSF) is working alongside the Ministry of Health to treat patients suffering from these types of complications.
In the busy area of Chamanculo, in Maputo, the capital of Mozambique, MSF is providing free healthcare through the Centro de Referência do Alto-Maé (CRAM). The CRAM functions as an intermediary facility between the main area hospital and primary health centre. It offers technical support and skills to the primary health care unit in managing complicated HIV/AIDS patients, at the same time taking pressure off the hospital by alleviating its caseload.
The CRAM has a chemotherapy unit that treats patients suffering from Kaposi’s sarcoma, a type of cancer that causes painful, and disfiguring lesions on the skin that’s linked to HIV. It is painful for the person affected and is heavily stigmatised because of the obvious wounds it causes on the skin. Those wounds are susceptible to secondary infections, which also can cause an adverse smell.
Though in Mozambique’s urban capital anti-retroviral (ARV) treatment is widely available, Kaposi’s sarcoma still affects many people in the area. This may be due to a lack of early detection of the disease: Kaposi’s is often only identified in its later stages, when patients come into primary care facilities with painful and visible lesions. One of MSF’s priorities in the city, along with treating the disfiguring disease, is improving early case detection.
If not for the CRAM facility, patients with Kaposi’s would otherwise have to go through the city’s primary health centres, only to be referred on to the hospital, where they may need to wait for hours or even days to receive attention. There is no guarantee that either would be equipped to deal with these complications, as technical skills, tools and medicines can be lacking in health structures in Mozambique. At the CRAM, hundreds of patients suffering with complications related to HIV/AIDS, like Kaposi’s, treatment failures or co-infection, are seen by health staff each month. Four hundred patients with Kaposi’s sarcoma are currently being administered treatment at the facility.
“The lesions started on my lower leg but it started to move up gradually. I couldn’t bend my leg and the swelling was so great that it felt like there were stones inside it. I saw a doctor about nine months ago about it and they told me it was Kaposi’s and put me on chemotherapy at the CRAM. Since I started the treatment, I haven’t missed a dose and will never give it up.
I have to receive treatment monthly. It’s kind of inconvenient – there are a few problems. The room that we get the treatment in is really small, and there are women and men receiving it in the same room at the same time. Also, the treatment can be hard on the body. I’ve lost my hair, though it’s now growing back really soft. Sometimes I don’t have an appetite and sometimes I throw up after eating. It feels like I have malaria. That lasts a three or so days and then I feel okay. Then I come back the next month for treatment and it’s the same thing, all over again.
I have an informal job – I work when the opportunity arrives, building things and giving support in construction. But for about a week each month I have to stop working because of the side effects of the chemotherapy. I don’t have an appetite and I have no energy. I feel better when I’m working.
I started working really early in life, when I was fifteen. I started working in a bar and then I moved into construction – the money was good. Once I was earning money, I started having kids. When you’re earning more money in Mozambique, you have more kids. I have four girls and three boys. I’m a grandfather now too: my oldest daughter, who’s 17, has a one year old baby. My wife is taking care of the children in the provinces. Here in Maputo, I’m living with my sister and making money and sending it back to my family. When I can I work, that is. I’m here in Maputo to work a bit, but really to follow the treatment.
People comment on my leg all the time. They don’t know what it is so I have to explain it to them when they ask. People associate it with sorcery and black magic, that sort of thing. Before I came to the hospital, I spent a lot of money with traditional healers but it was never successful.
Because I’ve suffered so much in the past and because I have kids, I know I can’t give up. I know if I stop the treatment, the pain will come back. The family know that if I die, nobody’s going to take care of the family. Before the treatment I couldn’t move, I couldn’t walk, work, take care of the kids, now that things are better I feel like I can do things now. Before, I had a regular life. I spent one year without doing anything but now I have my health again. I’ll keep on the treatment until the end of my life, or until the treatment ends.”
“I started treatment in 2007 in another health centre in the north. I was transferred from there to the referral centre. When I started treatment, the Kaposi’s on my legs hurt a lot. I’m feeling much better than before, though. I don’t feel pain anymore but I’m itchy all the time. Sometimes I wake up during the night with the sensation and I can’t sleep. I have had wounds on my skin caused by infections secondary to the HIV. It’s happened that I scratch them until I can see the new skin below. The skin goes up into the air like dust.
At home I always wear regular clothes but in the streets or if I’m going on public transportation I cover up, I wear sleeves and long skirts because the people. People ask, “What’s wrong with you?” and I really don’t like that. I’ll be on the bus and people will ask me about my condition – with all my explication people still know it’s ‘that disease’, as we call it – HIV. My family knows I have it, my husband, cousins, and my supportive friends, and they can help me if I need them to.
The treatment isn’t hard. It’s hard for somebody who doesn’t want to be treated. But for somebody who wants to be treated or wants to take care of their kids it’s not. I’ve got three sons at home. If you’ve got a family to take care of you’ve got to just get the treatment and get better.”
*Name has been changed to protect privacy