From the series Picturing Tuberculosis: Insights from the Field.
– “By: Katie Jordan, IPIHD Intern”
As a film intern with Operation ASHA, a community-based tuberculosis (TB) treatment organization in India and IPIHD Network Innovator, I’ve seen first hand that effective TB treatment encompasses more than just the medication, and the challenges are plentiful. Issues of access, adherence, and treatment management are common pitfalls capable of derailing TB treatment. Overcoming these pitfalls and arriving at a cure requires a holistic approach that puts the disease in the context of the patient’s physical, social, and economic circumstances. Operation ASHA has mastered such an approach.
Operation ASHA started with a simple mission: to eradicate tuberculosis. To accomplish this, three things must happen. Health care providers need to:
- Identify patients with tuberculosis
- Get them the necessary medication
- Make sure they take the medication as prescribed
These things are hard enough to do in densely packed urban slums where physical access to treatment is less of a challenge, but how does TB treatment play out in rural areas where patients are more remote? The film project I worked on highlighted Operation ASHA’s rural patients and how the organization has devised a method to reach them.
The term ‘over the river and through the woods’ sums up just how remote these patients are. Our team traveled over rivers, through woods, and down small dirt roads in order to reach the villages that Operation ASHA community health workers visit three times each week to identify and treat TB patients. Compounding the sheer distance and rough terrain that needs to be traveled, there are also unique and complex cultures in the rural tribal areas. Thus, instead of sending in workers from outside of the community, Operation ASHA trains and hires villagers to act as community health workers. Community health workers know the terrain, the language, the religion, and the customs. Most importantly, the patients trust them. By hiring local people, Operation ASHA provides respectable, safe jobs, a win-win situation for all involved.
Community health workers are the primary contact with remote villages and work to identify new patients and bring necessary treatments to the doorsteps of the most hard-to-reach populations. However, we are still faced with the question: How do you make sure patients are actually taking the medication when it is common for community health workers to misrepresent if their patients received their treatment? This is where Operation ASHA’s eCompliance system comes in. With the help of Microsoft, Operation ASAHA developed eCompliance, a device that records an electronic fingerprint from the community health worker and the patient in order to verify they are in the same place at the same time and that treatment has been successfully administered. Data from eCompliance is automatically uploaded to a server each night, allowing for quick identification of missed treatments and follow-up with the patient, community health worker, and an Operation ASHA supervisor to ensure proper treatment reaches the patient in a timely manner. In addition, the technology gives the community health worker leverage when treating their patients. Instead of just telling patients the reasons why taking their medications will benefit their health, they can point to the machine and say, “if you don’t take your medications, my boss will find out and I won’t be paid.” This tactic can be surprisingly effective for ensuring treatment adherence when the community health worker is the patient’s neighbor.
Unfortunately, sometimes even all of this isn’t enough to persuade a patient to take their medications. TB can be a grueling disease, and the medications can make the symptoms worse before they get better. Operation ASHA implements a two-pronged approach to this problem: educational and medicinal. Whenever a patient enters the Operation ASHA system, a profile is automatically created and the system is locked for any further use and entry for 45 minutes, prompting the community health worker to take time to counsel the patient and their family about everything TB. Patients and their families learn what to expect during treatment, how to avoid spreading TB to family members, and why it’s important to finish the treatment regiment. If the patient misses a dose, this counseling is repeated. Along with tuberculosis medications, providers also bring over the counter medications to their patients to ameliorate side effects from fever and nausea. In communities where health care is so hard to come by, these secondary treatments can make the difference between prematurely stopping treatment and finishing the full course of treatment.
In my relatively short time in India, the enthusiasm and passion community health workers have for their work is clear. Our team witnessed several situations where community health workers went above and beyond their Operation ASHA-prescribed duties. One provider pulled money from his own pocket to build a hut for a patient who had been kicked out of his family because of his TB. Another provider worked to obtain government assistance for a patient who had no money for food because of lost work time and wages from having TB. Operation ASHA community health workers not only take treatment to the doorsteps of their patients, but they also go that extra mile to make sure their patients will thrive even beyond their treatment.
Together, all of these factors contribute to the success Operation ASHA has experienced, including a 96.8% treatment compliance rate, compared to an average compliance rate of 88.25% in South Delhi urban slums during the same period. While the statistics are certainly compelling, the stories of Operation ASHA patients we visited in the tribal villages are even more telling. Our team had multiple people tell us that without Operation ASHA, they wouldn’t get treatment. Their husband wouldn’t get treatment. Their mother wouldn’t get treatment. In remote areas in India, delivery of essential TB medicine isn’t a matter of convenience; it’s a matter of life or death.