Marathoner, TB Survivor Calls for Govt, Private Sector to Step Up

In the lead up to World TB Day, a MDR TB survivor talks about why we need to engage with the private sector.

(This piece is an abridged extract from the book Tuberculosis—India’s Ticking Time Bomb: The Survivors’ Manifesto (Editor Chapal Mehra). The author is a contributor to the volume.)

(Saurabh Rane is an MDR (Multi-Drug-Resistant) TB Survivor and a marathoner. He is part of an advocacy group ‘Survivors Against TB’. His dream is to climb India’s highest peak on two half lungs. FIT will be bringing you stories of survivors in the lead up to World Tuberculosis Day, 2018)

I was training to be a doctor when I started feeling sick. After two weeks of continued fever, cough and immense weight loss, we decided to go for an x-ray and found I had fluid in my left lung. The doctor told me that it was TB.

I was started on medication but didn’t feel better even after a few months. In confusion and exasperation, I pushed my doctor for a left lung sonography to determine the cause of fever. During the sonography, my doctor accidentally coughed and his hand moved to my right lung. There were close to 1000 cc of fluid in my right lung. I was devastated, because now both my lungs were infected.

I lost faith in my doctor and went in for a second opinion. My new doctor advised further tests, especially a culture to diagnose my drug resistance. Tests revealed I was a highly drug-resistant case.

I could not believe it—especially because I know that the success rate of treatment for cases like mine was barely 20 percent.

Faced with mortality and loneliness, somewhere within me came the courage to fight. Over months of treatment, I felt a lot better. Eventually I defeated TB, but I am aware that not everyone is that lucky.

TB and the Private Sector

India has one of the world’s largest and most diverse private health sectors. Despite its heterogeneity, the private sector remains one of the largest providers of health services in the country. According to the National Sample Survey Office (NSSO), over 70 percent of Indians (72 percent in rural India and 79 percent in urban India) seek care in the private sector at one point or another.

In the case of TB, the percentage of patients seeking treatment in the private sector remains reasonably high, even though the government provides free treatment and diagnosis.

There are numerous reasons for this, of which ease of access and perceived quality of care are among the leading ones. In urban areas, ease of access, flexible timings and behaviour of healthcare staff are considered prominent reasons to avoid public sector facilities. Another associated reason is concern about confidentiality.

At the same time, diagnosis and treatment of TB in India’s vast private sector remains of uneven quality and, many argue, can even be an engine of drug resistance.

From the patient perspective, as well as from the perspective of disease control, the private sector is fraught with numerous challenges.

The private sector complains about the absence of information and outreach from the public sector TB programme. Being profit-led, the private sector finds itself unable to respond to government schemes with limited incentives and is more focused on numbers. Private practitioners admit that they may be unable to take on certain tasks, such as tracing those who miss taking medicines, providing social support to patients, and detailed record keeping and analysis.

There is a lack of resolve in the public sector to address the challenges in the private sector. National TB Programme (NTP) managers do not consider the private sector as a factor. The managers believe that eventually patients will turn away from exploitative and profit-oriented private practitioners. Others perceive the private sector as an unmanageable entity. Other constraints include a lack of willingness, necessary skills and human resources to work with the private sector.

What Do Patients Need from Private and Public Sector Healthcare?

It is the patient’s choice about where to seek care. Irrespective of where individuals seek care, it is important that the government ensures enforcement and accountability so that healthcare is reliable and affordable. The RNTCP has developed formal guidelines to help local programmes structure collaborations with private healthcare providers and non-governmental organizations. The guidelines need to be enforced stringently.

Every citizen affected by TB should be assured appropriate diagnosis and treatment in the private sector.

The private sector can play a pivotal role in controlling TB in India. In the interest of disease control, we need to collaborate with the private sector. This will help outreach in hard-to-reach areas, including remote rural areas. It will also lead to increased case detection and notification of TB cases. A strong system of referrals from the private to the public sector will scale up diagnostic and treatment services for TB and DR TB.