Katie Jordan

When a Cure Isn’t Enough: Exploring the challenges of tuberculosis treatment

“What is missing in TB treatment is the last mile. Patients find that it is too hard to access treatment. They must choose if they are going to go to work and get food for their families or if they will get TB treatment that day. And if they start the treatment, they stop halfway through, when they start feeling better. When you provide TB treatment correctly, you give a patient long-term productivity. There is food on the table, money for the children’s education and money for other benefits.”

– Shelly Batra, co-founder and president of Operation ASHA

During the first week of my internship with Operation ASHA, a community-based tuberculosis treatment organization in India and IPIHD Network Innovator, The New York Times released a piece on the rise of tuberculosis (TB).The article focuses on TB in the United States, but many of the points brought up by the author also apply to TB in India.

Patients diagnosed with TB must take at least six months of treatment (although this period can be a lot longer, depending on the strain of bacteria). During this time, patients need to take medication every other day. If we learned one thing during the first few days working with Operation ASHA, it is how imperative it is that treatment be completed once started. Drug-resistant strains arise when treatment is suspended, and these strains require many months of frequent medication. Sometimes, the bacteria become resistant to antibiotics completely, creating an incurable strain capable of causing a pandemic that, in the words of The New York Times article, “will not obey political or economic boundaries.”

(An Operation ASHA DOTS center in a slum in Delhi, India, left.)

So if uninterrupted treatment over such a long period of time is this important, how do we ensure it? India uses the World Health Organization directly observed treatment, short-course (DOTS) protocol. This requires that medicine be taken under the supervision of a community health worker every other day for months, meaning the patient must travel to a DOTS center to receive their dose. This can be problematic for several reasons:

1) How do the patients get there? Many patients don’t have the means for private travel and therefore must rely on public transportation. Depending on how far away they live, it can take hours for them to get to a DOTS center and take their medication, stealing hours that could be spent working and earning money. The financial strain that this can put on a patient and their family is immense, sometimes so immense that they’ll stop treatment altogether.

2) What if the patients don’t want to take the medications? TB treatment isn’t exactly a walk in the park. The side effects, including nausea, vomiting, rashes and the sensation of pins and needles, can be enough to break down even the strongest of patients when continuous over six months. In addition, there can be a stigma attached to TB. Patients can be discriminated against – kicked out of their work, schools and even families. Not only is this humiliating, but it can also rob the patients of their support system during this long treatment.

3) Who is responsible for managing the TB treatment? When patients stop treatment, the community health worker is supposed to track the patient down and get them back on track. But who is responsible for making sure this is actually done? The unfortunate truth is that fraud can be a big issue in TB treatment. Community health workers don’t always take the time to find the patient and, with no one checking up on them, no one is the wiser when patients don’t actually get their medications.

Further complicating the successful implementation of the DOTS protocol is the amount of time medication must be taken. Contrary to what the “short-course” part of the DOTS acronym suggests, six months is a long time to be consistently monitoring an outpatient treatment and, as The New York Times article points out, management of TB treatment is fragmented at best. This is no different in India. TB treatment can be obtained from multiple entities with different service strategies including the government, private doctors or one of the various non-governmental organizations committed to combating TB. If treatment is to become consistent, treatment regimens must become standardized. All patients should be looked after under one central system in order to ensure all patients are completing their treatments. Without this, patients will continue to miss treatments and the number of drug-resistant TB strains will increase.

Identifying the problems associated with TB treatment is the easy part. Determining the solutions is where it gets tricky. My internship with IPIHD and Operation ASHA will hopefully give insight into one of the possible solutions developed by the organization. Operation ASHA is a non-governmental organization with a simple mission: to eradicate tuberculosis. Using an innovative eCompliance system developed in conjunction with Microsoft technology, Operation ASHA has developed a way to ensure patients actually receive their medication. After taking the treatment, the patient must give an electronic signature that no one can forge: their fingerprint.

Our role as IPIHD interns will be to document – using photography and film – Operation ASHA’s expansion into the rural areas outside of Gwalior, Madhya Pradesh, where treatment is even harder to come by than in the urban slums of Delhi. In these rural areas, Operation ASHA implements a “mobile DOTS” system wherein a community health worker goes to the patient to deliver medication and get their fingerprint “signature.” Having spent a few days in Delhi learning about the eCompliance technology and how it has been implemented in the urban areas, we were excited to leave for Gwalior and see how Operation ASHA’s work has improved the lives of people living beyond the reach of normal medical care.

This blog originally appeared on the International Partnership for Innovative Healthcare Delivery blog, and is part of the “Picturing Tuberculosis: Insights from the Field” series. To learn more about Operation ASHA’s work, read their IPIHD Innovator Profile.

Katie Jordan is a senior at the University of North Carolina at Chapel Hill working with IPIHD and Operation ASHA as a film intern.

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