Kamarunnisa uses all her strength to hold her head up as a health worker enters her family’s one-room apartment in Mumbai, India. Her back is against the wall as she sits in her bed. A pink patterned scarf covers her hair. Her face is pale, yet her eyes continue to sparkle. She is suffering from tuberculosis, and in her case, drugs aren’t working.
More than 8,700 miles away, a nurse sticks a needle into Angela Lyons’ arm. On her lap is a black trash bag filled with her belongings. She squeezes her eyes closed until the needle is out. She is among dozens of homeless being tested for TB in a recreation room at the Union Rescue Mission in Los Angeles’ Skid Row.
According to the World Health Report’s latest estimate, 8.7 million new cases of tuberculosis were diagnosed worldwide in 2011, and more than one million people died. The disease affects the lungs but is treatable if caught early. When it comes to tuberculosis and other infectious diseases, where a person lives can mean the difference between life and death.
M Ward, Mumbai, India
Kamarunnisa is 18 years old and lives with her family in a government resettlement colony in Mumbai’s M Ward after the illegal slum they were living in was demolished to make way for new construction. The tall concrete buildings seem to block the sunlight. The alleyways are dark and full of trash. These buildings house thousands of people. Families sleep together in one room, with the kitchen is just feet away. Outside, trash fills the streets and mosquitoes breed where water sits stagnant in clogged drainage ditches. This is a place where rats die. A place where disease is rampant.
The non-governmental organization Doctors For You operates a drop-in clinic on the first floor of one of the buildings. Hand made signs are posted outside each door to direct people to different departments. Doctors and medical students provide primary health services to this community, and often treat tuberculosis patients. Treatment is a six-month process. The medicine Doctors For You provides is free, and it’s staff conduct home visits for patients like Kamarunnisa who is too weak to leave the family’s apartment.
Kamarunnisa’s mother, Sarumisa, cares for her. Sitting just feet away from her daughter, Sarumisa’s eyes fill with tears. She says her daughter seems too young to die, but her prognosis isn’t good. The family is Muslim, and Sarumisa says she must accept her daughter’s fate, even if it’s death. Although Kamarunnisa continues sits quietly on the bed, she eventually flashes a hopeful smile.
Health workers say there’s a reason drugs aren’t working for Kamarunnisa. She had tuberculosis once before, and then got jaundice. And then the tuberculosis came back. She likely has a mutated form of TB, making effective treatment more difficult if not impossible. To make matters worse, the medicine meant to treat Kamarunnisa makes her sick, and she can’t keep it down.
Sarumisa blames her daughter’s illness on the government resettlement colony. She believes her daughter would have never gotten the disease if the family were able to stay in their shanty built in an illegal slum. Her sentiments are echoed by others living in the colony. They say this place is worse than a slum.
A health worker helping treat Kamarunnisa, says the infection rate would likely be reduced by half if the community was cleaned up. But there is little motivation for the government to clean up. And as for residents, efforts to clean common spaces are futile. There are too many people living in desperate conditions, feeling overwhelmed and powerless.
Skid Row, Los Angeles
Angela is alone, although she has two grown children. She says she became homeless after her own parents died about 10 years ago. She wears a purple bandana with black stripes and keeps her belongings close. She used to live on the streets, but recently transitioned into a shelter where she sleeps in a small room with strangers.
All along Skid Row are piles of trash and needles discarded by drug addicts. During the day, those with addictions and mental illnesses roam the streets. At night, people pitch tents and sleep on sidewalks. It’s a place most people dare not go. The rats running underneath the streets and sidewalks often die of disease. Sometimes, so do people.
Angela calls it the “death rattle.” It’s how she describes the coughs she hears from those extremely sick. One of the symptoms of tuberculosis is coughing. It’s also how the disease is spread. Angela must protect herself from this disease because her health is already compromised. She has Hepatitis C, a disease affecting the liver.
There’s been a lot of talk about TB in Skid Row lately after the health department linked cases to the community’s homeless population, which included 11 deaths. But the data includes cases from 2007 to now. There were 78 cases among homeless in Los Angeles during a five-year span. It’s considered an outbreak. An epidemic. The general public is alarmed.
In response, the health department has stepped up efforts to test people in Skid Row for TB. Officially, 4,500 people could be at risk. The UCLA School of Nursing Health Center at the Union Rescue Mission has even walked the streets, encouraging homeless get tested, especially those with a cough.
Inside the Union Rescue Mission, Angela sits at a table across from a nurse practitioner that asks her whether she’s had a fever, night sweats, or unexplained weight loss. These are all symptoms of TB. Angela then gets up and walks a few steps to the other end of the table where a different nurse cleans her forearm before performing the TB test. It only takes a few seconds.
The results will be read in two days. If it’s positive, Angela will have to get an X-ray which is more accurate. Everyone staying in a Skid Row shelter or participating in a shelter program, such as a drug-rehabilitation program, is required to get a TB test. It’s a preventative measure meant to keep infections from spreading.
Kamarunnisa and Angela both live in communities where diseases thrive. In developing countries like India, treatment is more often reactive. Developed countries like the United States are more likely to pour resources into screening and preventative measures. The health department even pays to house people with tuberculosis elsewhere, so they don’t infect others. That means Angela is less likely to encounter someone that is infected. But Kamarunnisa continues to sleep inches away from her parents and siblings. If she coughs, she can easily spread the disease.
The precautions taken by public health officials in Los Angeles to ward off outbreaks of tuberculosis is in stark contrast to measures taken in countries where the disease proves more deadly. Many humanitarian organizations work with the government to treat cases of TB. But drug resistant strains continue to cause international concern. Just this month the World Health Organization and the Global Fund to Fight AIDS, TB and Malaria, said $1.6 billion needs to raised annually to help treat and prevent drug resistant strains.
India had upwards of 2.5 million incident cases of tuberculosis in 2011. That’s more than any other country, including China with roughly one million incident cases. According to the World Health Organization, 40 percent of the world’s tuberculosis cases were in India and China.
On the other side of the globe, in the United States, there were a little more than 10,500 cases of tuberculosis that same year. According to the Centers for Disease Control, foreign born patients accounted for 62 percent of those cases, meaning those people were likely infected abroad.
Alas, when it comes to tuberculosis, where a person lives can mean the difference between life and death.
Lindsey Mastis traveled to India as a fellow with The International Reporting Project (IRP), a non-profit journalism organization, is based at the Johns Hopkins University’s Paul H. Nitze School of Advanced International Studies. Major funding for the New Media Trip to India comes from the Bill & Melinda Gates Foundation. This independent fellowship program maintains editorial independence and the final content is at the sole discretion of IRP.