In a Neighborhood’s Battle with Deadly Disease, Brazil’s Shame and Its Pride

Terrible rates of tuberculosis infection wrack the residents of this Rio slum, writes Felipe Betim; but in the struggles of residents and health care workers, he finds a certain amount of hope:

The powerful sunlight that shines throughout Rio de Janeiro does not reach the home of Maria Irenice Silva, a 30 year old woman residing in Rocinha, Rio’s biggest slum. She lives there with little Maria Victoria, her 2-year-old daughter, inside an apartment as big as a cubicle located on what’s called “Crazy Men alley”. There, she lives in permanent shade, and her only source of light – even at noon on a summer day – comes from the bulbs she’s installed outside her home, which is on the ground floor of a building at the end of the downward slope that is the alley. The strong smell of the mold that has covered the walls of her home over the years, maybe decades, mixes with the stench from the open sewage that runs by her doorstep outside. The apartment has a low ceiling. The only miniscule window is constantly shut with a towel so rats don’t invade the place at night, and an antediluvian air conditioner permanently on provides some ventilation. But oxygen barely enters her lungs.

“Nice”, as she is knows among the tens of neighbors that live practically stuck together side by side on the alley, is one of other three hundred people diagnosed with tuberculosis in Rocinha. An infectious disease, TB is transmitted through air and is caused by bacteria that attack mainly the lungs – but the bones and the nervous systems can be affected by it as well. Loss of appetite, constant coughing for more than three weeks and fatigue are some of the symptoms, which can be easily mistaken for symptoms of pneumonia or the common flu. Even though it is as old as Portuguese domain over Brazil and widely disregarded by the general population and some healthcare professionals, TB is far from being eradicated because more than a disease it is an urban, social and historical problem. The treatment for it is accessible and recovery is possible. The problem concerning TB here is prevention: the disease spreads more easily throughout areas where there are large gatherings of people that live in poverty, and where spaces are always closed, with little sunlight and ventilation. Just like the alleyway where Nice resides, and just like most of Rocinha.

Located on Rio’s South Zone, Rocinha has over one hundred thousand inhabitants, and is said by specialists to be one of the largest areas where TB still thrives in the country: the City’s administration has registered there an average of 372 cases for every hundred thousand inhabitants, a figure eleven times higher than the national average. In 2014, Brazil confirmed 66,467 cases of TB (33.8 for every hundred thousand people), which makes the country rank 17 among the 22 countries that together comprise around 80% of worldwide TB cases, according to the World Health Organization (WHO).

“Actually, Rocinha doesn’t have the highest rate of TB in the country; the thing is that this same financial, social and urban lifestyle is reproduced in other slums such as Cidade de Deus, Complexo do Alemão, Maré, Rio das Pedras…”, argues Carlos Basilio, psychologist and activist for the Observatory of Tuberculosis in Brazil. For him and for other specialists, the difference is that while for other vulnerable areas and groups in Rio and Brazil – such as slums, overcrowded prisons, homeless people and the indigenous population – there is still not enough research data on the rise of TB, Rocinha has been studied for years. The high rates of TB within its territory exposes a XIX century social agenda in Brazil that is yet to be overcome. On developed countries – even in Cuba – Tb rates are so low that the WHO considers it eradicated.

While her small daughter Maria Victoria sleeps on a double bed, one of the single pieces of furniture inside the one bedroom apartment, Nice explains the method she uses to boil milk for the girl: “I grab these two bricks, pour some alcohol on this little dish, and place the pot on top of it. I can even cook rice like this”. Her partner, known as “Mr. João”, died last February victim of TB after a ten-year struggle with the disease, which in his case became multidrug-resistant after he abandoned treatment on several occasions. Alone, unemployed, a mother of two almost unassisted by any government program, Nice depends on the help of her neighbors to support her family, and on the community’s healthcare agent for the treatment of her disease. “The agent comes here every single day to give me my medication. I feel better already, but I know I can’t quit the treatment right now”.

The figure of the family doctor is a reality in Rocinha, where healthcare coverage, according to the City, reaches 100% of the population thanks to the presence there of three medical posts and an ER unit. The construction of medical facilities in Rocinha after decades of struggle with the government is a personal victory of the community’s healthcare professionals, especially 58-year-old nurse Maria Helena Carneiro de Carvalho, born and raised in the slum. She is the director of Municipal Healthcare Center Albert Sabin, a family clinic that provides medical assistance for Rocinha’s inhabitants since the 80’s. The clinic was the only medical post in the slum until 2010, when other units were open. Since then, the clinic has grown in size and gone through renovations.

Nowadays, the favela has been divided into 25 areas, each one with its own healthcare team, composed of one doctor, one nurse and six community agents (all of which live in Rocinha). A total of 150 agents visits everyday all of the slum’s houses, delivering four antibiotic pills to TB patients, and following up on chronic diseases such as diabetes and high blood pressure.

Letícia Souza, 18 years old, waits eagerly every day for the arrival of community healthcare agent Raquel, who brings her medication. Small and frail, with the constitution of a 14 year old, “Lelê”, as she is known, still finds it difficult to swallow the four big pink antibiotic pills. The solution found by her mother, Ana Lúcia, is to make a fruit juice and cut the medication into small bits. “Come on, Lelê, you can do it”, says the agent Raquel while the girl’s mother, eight months pregnant herself, holds the jar containing the juice. “Once she threw up the second she saw Raquel arrive, because she remembered the pills’ awful taste”, she recalls.

Lelê’s treatment, like everyone else’s, last for about six months. When the TB becomes multidrug-resistant, the treatment lasts for more than one year and the medication is even stronger, possibly causing side effects that range from deafness and persistent nausea to psychosis, depending of the seriousness of each case. So her case won’t become a serious one, Lelê has to take her medication religiously every morning, eat healthy foods, sun bathe, and breath the fresh air on the roof of her grandma’s house. She must avoid staying long periods inside the house below, where she lives with her parents, right in front of another open sewage line on another of Rocinha’s dark alleys. She depends on her family’s support during the treatment so she can become strong enough again to go to school. “One of the biggest issues concerning TB patients is the stigma, the shame. And that can become a problem when the family is not supportive. The patient’s surroundings must contribute to their recovery. And the healthcare agent must establish a good relationship with the family”, explains nurse Maria Helena.

TB rates in Rocinha may be high, but they’ve been higher (455 cases for every 100,000 inhabitants in 2001). But the important thing is that the disease is now more controlled thanks to the efficacy of the treatment: recovery rates have gone from 66.1% in 2001 to 81.2% in 2013, while the number of patients that abandon the treatment has decreased form 18.2% to 11.6%. This represents over 300 new cases each year, with a mortality rate of 45, which is considered satisfactory.

“The treatment works well, the problem is that in Brazil we still lack a policy that would be more efficient when it comes to family prevention, because families are highly susceptible to contracting the disease from their relatives. We still prioritize cure over prevention because when a patient abandons the treatment, TB becomes multidrug-resistant. Therefore, our main goal is to increase recovery rates”, explains Fabiana Assumpção, a teacher at the Federal University of the State of Rio’s Nursing School who monitors TB cases in Rocinha.

Brazil’s National Healthcare System monopolizes the management and free distribution of antibiotics, which cannot be sold on drug stores. In order for the disease to be considered eradicated by the WHO, recovery rates must reach 85%. In the state of Rio, the most affect by TB in the country in absolute numbers (it had 14,105 cases in 2013) and the second state with the highest recurrence rates (68 cases for every 100,000 inhabitants), due to humidity levels and the sheer number of slums, recovery rates are around 64.3%. The city of Rio, on the other hand, has around 7,000 new cases yearly and recurrence rates range at 89.7 cases for every 100,000 inhabitants (the figure used to be 107.6 back in 2001). Recovery rates for the city are at 71.4% (they used to be 51.9% in 2001).

The City hopes to increase these figures since it’s been expanding the public healthcare network in order to comply with one of the Ministry of Health’s guidelines. In 2009 the state-sponsored Family Health Program reached about 3.5% of carioca families, and today this number is 48.1%. The main goal of the program is to reach 70% of families by 2016.

The main obstacle against the increase in public healthcare coverage, in Rocinha as well as in the rest of Rio, is related to a lack of human resources: doctors, nurses and community agents… There are not enough professionals working for the National Healthcare System, and the City has been outsourcing these services through contracts with NGO’s such as Viva Rio in order to increase medical coverage. According to specialist in this field, the biggest problem with outsourcing is that contracts are temporary, and the rotation of workers hinders healthcare professionals from staying too long in one place – a crucial aspect for the success of the Family Health Program.

It is impossible to talk about TB prevention without considering the issues of urbanization and political will. Even though treatment has improved and recovery rates are considered satisfactory, Rocinha still has to tackle the problems of urbanization and the high concentration of people per square meter. Rocinha sits on a valley: to the right, there’s Dois Irmãos Mountain, and to the left, the Tijuca Park nature reserve. It grows vertically, ever more closing in on itself and becoming denser. This growth consumes space, and there’s no sunlight, no air flow”, highlights nurse Maria Helena. And impoverished people like us tend to follow a certain trend: “as our families get bigger, we build extra rooms in our houses to accommodate them if we can”, she adds.

Former community healthcare agent Rita Smith, 52, is quite familiar with this situation: she’s contracted TB twice, and is now an activist in the fight against the disease. She was raised on Rocinha’s infamous 4th Street, which used to be a 500 meter long street and about a meter wide until a federal urbanization program (known as PAC) improved things a little. The street’s inhabitants used to live insanely close to one another in a place never struck by sunlight.
The highest number of TB cases in Rocinha happened on 4th street, according to Nurse Maria Helena, who learned the information back in 2007 when she took a geoprocessing data course. “Because of the high number of cases we were able to insert the issue of public health within the agenda of the PAC program”, she explains.

With the PAC program, many houses were demolished, the street was widened, and most of the people that used to live here were redirected to live on colorful buildings erected close by – which are already visibly deteriorated, due to the second-rate materials used on construction. Today, children run and ride their bikes in the place. A clearing was open: the sun now shines, and air flows through people’s lungs. And the number of TB cases registered on 4th street plummeted to zero. “I don’t know if we’ll ever be able to eradicate the disease, but the number of cases will decrease drastically, I’m sure of that. It’s a respiratory disease. And if I can breathe, I won’t get sick. Information is not enough to prevent you from contracting TB. Good living conditions are essential, concludes Maria Helena.

Felipe Betim Translated from Portuguese by International Boulevard