A local NGO called Inter Aide is helping me coordinate my visit in Mumbai.  The French group, which started operating in India in 1980, initially offered a variety of social services, but quickly saw a need to incorporate TB into their programming.  Today they coordinate the activities of 5 smaller NGOs that operate in the slums of eastern Mumbai, heling them organize and implement services to TB patients.  I have been spending quite a bit of time with Lok Seva Sangam(LSS), one of the groups that works with Inter Aide.

When I began working on and learning about TB I had a lot of questions about why the disease was spreading.  If TB is treatable, then why is it not simply found and treated?   I quickly learned that there are a variety of social and economic factors that make it very difficult to diagnose patients, and very difficult to ensure that patients stay on their treatment program.  LSS tries to mitigate the social and economic variables that often stand in the way, leaving only the simple solution: diagnose and treat.  This is often much more difficult than it sounds.

To understand these difficulties I found it easiest to look at the progression of a TB patient, from the time they begin to feel sick through the end of their treatment.

 To begin, there is often a general lack of awareness and education about the disease and what the symptoms are. If a person living in a slum in Mumbai has chest pain, nausea or night sweats, they may not understand that these are potential symptoms of TB.  The same lack of understanding about where the disease comes from and what it’s effects are often leads to a social stigma being attached to having the disease, meaning potential patients would do everything they can to not be diagnosed with TB and ostracized by their communities.  In many communities there is simply a lack of health services to diagnose the disease; if a patient only earns $60/month, it is a real sacrifice to miss a day of work and pay transportation costs to travel to the nearest clinic capable of making a diagnosis.  Often a decision has to be made between earning money to provide for one’s family, or going to a clinic to be diagnosed with a disease that you know little about, except that in your community it is taboo to have it.

LSS tries to tackle these issues by running a series of education programs that aim to raise awareness about TB, its symptoms and just how treatable it is.  They pass out information at high transit sites, like train stations, and run workshops at schools, community groups and occupational training courses.  The group also visits the offices of private doctors within the slums, educating these primary health providers about TB and urging them to refer patients to diagnosis centers.  People must first know that the disease exists and that it is treatable before they can begin the process of getting healthy.

LSS has set up a collection of diagnosis centers were potential patients can give sputum samples that are then transported to one of their own labs for diagnosis.  These centers are placed in the heart of poor communities, and kept open early in the morning and late in the evening, in the hope that patients will be more likely to begin the diagnosis process if they can quickly walk to a center without missing work or spending money. 

Once a patient is diagnosed with TB they must begin a treatment regiment that can last for six to eight months.  They must take as many as 7 pills a day for the first 2 months.  The pills are difficult to swallow and can have some unpleasant side effects; it is important that people know how necessary it is to take the pills every day without fail, even when it is difficult.  Failure to stay on the medicine can allow a drug resistant strain to emerge, making the disease much more difficult and expensive to treat.  In order to ensure that patients stay on treatment, LSS has set up clinics where patients must go every other day to get their medicine.  If a patient fails to show up to the clinic an LSS worker will go to their house to ensure that treatment continues.

There are many reasons why a patient may fail to show up for treatment:  they might not understand the importance of taking the daily dosage; they don’t want their community to see them going in to a TB clinic; they may feel better after a few months and not realize they need to continue the treatment; there is a death in the family and they have to travel for a funeral; they are unable to get off work to go to the clinic.  The LSS community workers try to deal with all of these problems when they arise, and find solutions that will allow the patient to continue taking their medicine.

Photojournalist David Rochkind, winner of the 2009 Stop TB Partnership Images to Stop Tuberculosis Award is travelling in India and producing a photo reportage about TB.