It is 9 am on a sticky morning in Maputo, Mozambique and the 1st of May Health Center in the Maxaquene district is bustling. Around the side of the colonial-era building, in the open air waiting area, several hundred people – probably two-thirds of them women – sit patiently on concrete benches in the shade of some trees and a lean-to roof. They are waiting for their names to be called from a door at the top of some stairs. There is the torpor and faint medicine smell common to public clinics the world over.
In the midst of the waiting area is a striking woman on crutches. She is addressing everyone clearly in Portuguese and Changana, the local variant of the Tsonga language. She is Cacilda Fumo, a community paralegal —known locally as a health advocate — working for Namati Moçambique.
Cacilda is addressing people who have, or worry that they have, tuberculosis (TB) or HIV. HIV is a generalized epidemic in Mozambique, affecting 11 percent of the adult population. Around two-thirds of those in the country with TB are also HIV-positive. TB, a disease of poverty—and for most in the developed world, of the past— is the leading cause of death for those living with HIV in Mozambique.
Cacilda is telling the patients about the rules and their rights at the 1st of May Health Center. She explains what time the staff should be there and what medicines are always free (anti-TB and anti-retrovirals) and which non-critical meds cost a small fee. She gives out her name and number to anyone who needs to talk: “If there are any issues call me and I will help you”.
Cacilda is a charismatic and hugely empathetic woman, with a face that tells little of the difficulties she has encountered in life. She has worked as a community activist for over a decade and joined Namati in May 2014. The work of a health advocate is much more comprehensive than that of an activist.
Cacilda doesn’t just provide support and basic health information. Namati’s health advocates are trained in both science and policy – not only ‘what is TB, how do you prevent it,’ but also ‘what are the Ministry of Health’s protocols for treating it it; what services should patients be receiving and how.’ They also have training on how to secure redress for grievances, and how to provide technical assistance to village health committees.
Cacilda’s ‘patch’ of Maxaquene is one of Maputo’s poorest districts, originally an informal bairro close to the center of the city. Off the main streets, you quickly turn onto lanes of sand passing by structures of tin and concrete block. Cacilda does outreach work here when she is not in the clinic, traveling from home to home, seeking to identify health rights issues for a population that often has no firm idea of how to voice their complaints or hold the health system accountable.
We travel to a brightly-painted community center which, like much of Maputo, is bedecked with posters from a recent Presidential election campaign. The besuited winner looks, at least superficially, rather contrasting to the revolutionary posters of his political ancestors.
We are here to meet a group of Cacilda’s clients, four people living with TB. There should have been five, but one of the group died a few days ago.
Antonio is a quietly-spoken man of 43, thin and tall with a small goatee. He was a security guard when he first contracted TB in 2007 – he had fever and chills in his chest. With treatment, he got better. In 2014 the TB came back and after three months and a spell in hospital, it was discovered he had the multi-drug resistant (MDR) strain of TB. He was told his family should have been tested.
Gabriel is a 21-year old who wants to study to be an electrician. He started to feel weak and sick in October 2014. He went repeatedly to the 1st of May Health Center, to be told he just had a fever and be given some paracetamol. After the inconclusive clinic sessions, he took himself on his own to the main city hospital where he tested positive for TB. After two days as an in-patient, he has spent three months walking for 40 minutes each morning to the clinic for treatment. It takes so long to walk because he is so weak and needs the support of his mother and sister. He then waits 1-2 hours each day for his TB medication.
Olivia is in her early thirties with close-cropped hair. She has four children and until she got sick in March 2014 worked in a Maputo pizza restaurant. During a number of trips to the clinic she was told her sickness would pass, or that her lungs just needed to be ‘cleared’. “I was always going to the clinic,” she says.
Olivia had an inconclusive X-ray and then after two more wasted months, another X-ray that finally diagnosed her with MDR TB that had also moved into her bones. She was told she would need two years of treatment with strong side effects. She can’t work, has no partner, and has been surviving with the help of friends since she got sick. Thankfully her children were tested and are so far clear of the disease.
“I am not afraid of this illness,” she says. “The most important thing is to stay strong and fight the disease.”
Thirty-six year old Maria is high-cheek-boned and thin. Before she got sick she sold rice and beans from a small market stall. Her symptoms began in November 2013 and she was told by a nurse it was anemia until eventually recurrent TB was diagnosed. “I had two months of injections, but in the middle of my treatment, I wasn’t getting better. I was getting thinner.” Eventually, in July 2014, she was diagnosed with MDR TB. She lives with her two children, her mother, grandmother, and her niece and nephews.
“Cacilda is always at the clinic,” says Olivia. “She advises us not to miss our treatment and be committed to coming every day. She tells us we cannot drink or smoke. But more important, without her we would not know that our families needed to be screened for TB. No one was doing anything about patient education.”
“We went to see Cacilda because we always see her at the clinic. To tell her that no one was letting us know what to do about our families,” says Maria. “Some children were getting tested, but some were not.”
Cacilda discovered that a lab technician at the clinic had decided that only those with afternoon appointments could bring their children for screening tests. If you had an appointment in the morning, you couldn’t get your children tested. Family members need to be tested early, as soon as a patient is diagnosed, because that is when the disease is most infectious.
Now the clinic offers family screening all day and has started to give talks about wearing masks to prevent cross-infection. “It used to be possible to sit all day and not be seen by a nurse,” says Antonio. “Now that doesn’t happen. If the nurse doesn’t have time to give talks, Cacilda makes sure other staff and patients are always passing on information to new people. I even tell my neighbors to get tested quickly if they fall ill.”
“I would like a space where we could give more talks about TB treatment and patient rights,” says Olivia. “It is important because it gives people strength when they first get sick. I am trying to volunteer myself to become a health activist – I think it is much more powerful when it comes from someone who has had the disease.”
In Mozambique, great advances have been made in recent years in the treatment regimes of people with TB and HIV. But the medical system is stretched. Staff are overworked and doctors are rare. The country deals with complex health needs that would challenge a well-resourced health service in the developed world.
Health advocates like Cacilda are a crucial tool for helping empower the people of Mozambique – so that they themselves can help create a system that recognizes the rights they are due and gives them the care they need.