June 16, 2014
Meet Saima Arshad. When she tested positive for tuberculosis, she was quarantined in her in-laws house, forced to wear a protective mask, and separated from the entire family including her husband.
It had become very difficult to keep a mask on all day; sometimes, I even slept with it on, Arshad, 29, said in a story she shared with the Tasweer-e-Zindagi Project. “I couldn t breathe. Each minute, each second was very difficult. During those few moments when I would remove my mask to eat or drink, I felt like I had regained life.”
These difficulties are daily realities of patients living with TB. Now think a step beyond TB and examine the life of a patient with multi-drug resistant TB (MDR-TB) or extensively drug-resistant TB (XDR-TB). The picture is slightly more distressing. Not only do these patients take their medicines second-line drugs in high doses, but their treatments also take a long time. These complications leave more room for the risk of incomplete treatment regimens, contributing to higher levels of resistance, and, in the worst cases, failed treatments.
According to our recent graphic, based on 2013 WHO MDR-TB data, Pakistan ranks fifth in the world for the most reported MDR-TB cases after giants like India, China, and Russia and fourth for TB. A higher capacity to report the state of a disease through big data is a reality of today’s public health culture. It means obtaining grants, gaining attention in the news, and providing a picture of the problem. Yet we constantly hear in conferences and lectures: It s great that we identify the problem and know we have it. Now what? What do we do with it? Can we treat people? Do we have the funds or the access to treatment, especially if they cannot pay for it?
It was impressive to see a model that addressed the now what during my visit to Indus Hospital in Karachi, Pakistan earlier this year. Through a collaboration between Indus Hospital and Interactive Research and Development (IRD), I was thrilled to find the first community-based MDR-TB surveillance program in Pakistan that cared not only about identifying the problem, but also about fixing it all while maintaining the zeal to be a part of the effort to assess the national MDR-TB burden.
My visit began with a drive to one of IRD s Sehatmand Zindagi clinics in Korangi, a low-income coastal town about two kilometers away from Indus Hospital. These clinics screen and test large numbers of patients for TB and diabetes. Only TB treatment is free so far at these centers, though they have plans to expand to other diseases. The clinic I visited was clean and open air, and the instructions for sputum collection (after a verbal consultation for screening) were made clear through video monitors administered in the different languages spoken in Pakistan.
The process was systematic for identifying TB, MDR-TB, and XDR-TB. The patient would first be given a verbal screening, and then moved onto a chest X-ray if he or she showed any signs of having TB. This X-ray is low-cost due to the CAD-4 software, which does not incur high operational costs. Here, the patient only pays an out-of-pocket cost of USD $5, with all other screenings and potential treatments free of charge. After determining if the patient may have TB based on a score, the patient undergoes the Gene Xpert test to conclude whether he or she is positive for TB or has a case of MDR-TB. This test, which usually costs $10, and any subsequent treatments are provided free of charge. All patients identified with susceptible TB are provided free TB diagnostics and treatment at the Sehatmand clinic. MDR-TB patients are referred to Indus Hospital for free care management.
The process and the mechanisms for entering patient data were simple. The staff was well trained and understood the importance of entering the data properly. A counseling system was in place at the very end of the screenings for patients who received positive results.
Afterwards, I went back to the Indus Hospital TB outpatient clinic, where I met with Naeem Ahmed, a field program expert for TB counseling and treatment. As I walked through the clinic, mask over my nose and mouth, I met other treatment counselors entering data from their field visits with the MDR-TB patients. These counselors were heavily involved in making sure their assigned patients were continuing their treatments.
This follow-up included travel not only within Karachi, but also surrounding areas of the Sindh province and remote areas of Balochistan, where violence and kidnappings have been ongoing. In fact, one staff member was kidnapped and held hostage for 17 days, but this incident did not stop him from continuing his work and making sure TB and MDR-TB patients are being diagnosed and treated.
This type of courage and passion is a reminder of why we should encourage the study of public health. Without it, the actual numbers showing the incidence of MDR-TB would not be available in countries like Pakistan, where political strife has undermined efforts to eliminate polio. We would also lose a link to understanding the extent of drug resistance, which is officially a major global threat , according to the WHO. Finally, as the example of Indus and IRD shows, the human faces in detecting and treating TB or MDR-TB are not just the patients who suffer from these illnesses, but also the people delivering care to them directly or indirectly.
Photo of Saima Arshad, an MDR-TB patient, via the Tasweer-e-Zindagi Project.
