TB time bomb: A survivor's story

Saurabh Rane

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 tuberculosis.

I was started on medication but didn’t feel better even after a few months. Given my medical training, I knew something was wrong. I persuaded the doctor to get a drug sensitivity test done. Yet nothing conclusive was found and my treatment continued, based on what, I am not sure.

I developed high fever again and lost more weight. 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 moved his hand 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. Also, treatment was long, expensive, and came with multiple side effects. My treatment lasted for over two-and-a-half years — months of extreme side effects, high costs, anxiety and mental fatigue. If it was not for my family and a few friends, I would not have survived this.

TB affects 2.8 million Indians every year. While I sought treatment in the private sector, what we really need is free high-quality diagnosis and treatment irrespective of whether one is diagnosed in the private or public sector.

Anyone can get TB; what is critical is to have access to easy, affordable and quality diagnosis and medicines. Hopefully, policy makers in India will read this piece and make the changes we need to end TB.

TB AND THE PRIVATE SECTOR

India has one of the world’s largest and most diverse private health sectors. From qualified doctors to quacks to ‘jhola wala’ practitioners — everyone treats everything, simple and complex ailments alike. 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. This poses challenges but also enormous opportunities for ensuring access to affordable, accurate and reliable high-quality treatment and healthcare services.

In the case of TB, the majority of patients initially seek treatment in the private sector, 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 amongst 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. Yet millions prefer the private sector. This poses interesting challenges about balancing patient choice and quality of care in India.

Traditionally, an average TB patient has a long and somewhat schizophrenic trajectory. They often swing between the private and public sectors as funds run out and a final cure remains difficult to obtain. In most cases, there is some interface with the private sector. Clearly, TB in India cannot be ended until the private sector is engaged effectively. This means that the government needs to employ new and innovative strategies to engage and work with the private sector.

THE BIG GAPS

From the patient perspective, as well as from the perspective of disease control, the private sector is fraught with numerous challenges. These include but are not limited to the following:

Diagnosis: TB diagnosis can be a challenge, as the private sector prescribes a plethora of tests for TB diagnosis. Many of these tests are inappropriate for TB detection and are riddled with their own unique challenges. For instance, liquid culture testing takes weeks to provide a result. It is costly and can only be carried out by highly trained staff in specialist laboratories. Similarly, the nucleic acid amplification test (NAAT), which is widely recognized as one of the most efficient means of testing TB, has diagnostic cartridges with a short shelf-life, operating temperature and humidity restrictions, requires a continuous electricity supply and needs annual servicing and calibration of each machine.

Treatment: Private providers have poor compliance with the Revised National TB Control Programme (RNTCP)/World Health Organization (WHO) treatment regimens, with errors in both dosage of drugs and duration of treatment. Also, poor usage of proper adherence methodologies leads to low adherence among patients. Many view this as a genesis for drug resistance in India.

Expense: The costs of diagnosis and treatment remain prohibitive in the private sector. Most patients cannot afford quality care without financial strain. This also makes treatment adherence a challenge. In many cases, patients are forced to stop their course of treatment due to the high costs of medicines, tests or consultations in the private sector. Because of its profit-seeking nature, the private sector also has no system of monitoring to ensure that patients complete treatment.

Uneven quality of care: This is both a function of the heterogeneous nature of private providers, their limited skill levels and poor understanding of TB. This leads to delayed diagnoses, poor diagnostic and treatment practices, and poor compliance with TB treatment. Further, follow-up care, such as contact tracing, co-infection (diabetes and HIV) screening and prophylaxis, remains feeble. This is a function of the numerous quacks and less-qualified providers in the private sectors who treat and diagnose TB.

Lack of counselling and support: There is virtually no engagement of patients and their families via TB counselling and support. As a result, families do not understand the importance of care for TB-affected individuals, and patients themselves do not receive much needed support for the issues they face during TB treatment. Widespread information and awareness building campaigns for patients and their families are needed. However, these are completely missing in the private sector.

THE PP MODEL

From a systemic point of view, there are numerous challenges to the public and private sector working together.

The private sector complains about the absence of information and outreach from the public sector TB programme. The constant refrain is that the government doesn’t do much to engage them.

Being profit-led, the private sector finds itself unable to respond to government schemes with limited incentives and is more focussed 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.

In many cases, public sector managers are too preoccupied with the DOTS programmes. They are apprehensive about addressing the additional challenges that the private sector poses.

Other constraints include a lack of willingness, as well as the necessary skills and human resources to work with the private sector. Nonetheless, there is general agreement on the need to act to get private practitioners on board.

NATIONAL COMMITMENTS

The National Strategic Plan (2012–2017) ensured early and improved diagnosis of all TB patients, improved outreach, expansion of case-finding efforts, and deploying better diagnostic services to patients diagnosed and treated in the private sector.

The recent National Strategic Plan (2017–2025) specifies the provision of free diagnosis and treatment in the private sector. Strategies to control TB through public sector health services will have little impact if inappropriate management of TB patients in private clinics continues unabated. While little has changed over the years, we are hopeful that the private sector will comply with the latest suggestions in the NSP.

PATIENTS AND PRIORITIES

Assured quality of care: 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 of appropriate diagnosis and treatment in the private sector.

Seamless access through public-private partnerships: 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 drug-resistant TB. In the end, every TB affected individual should have seamless access to care either through the public or private sectors.

Free and affordable care: The government aims to provide universal access to quality diagnosis and treatment to end TB by 2025. However, even today most private sector patients do not have access to free diagnosis and treatment without enrolling in the government programme. Every patient must be able to access free diagnosis and treatment in the private sector. This can be done easily by following options in partnership with the private sector:

• Participation in referring, diagnosing and treating patients with TB;
• Establishing TB treatment centres within a private healthcare facility and
• Conducting training and workshops with private laboratories.

Counselling: The government needs to ensure that every patient receives appropriate counselling through the government as well as the private sector, empowering them with sufficient information to deal with the disease and also providing the appropriate support systems to manage the disease. Every TB affected family must be provided appropriate counselling and information in their regional language both in the public and private sectors. The government needs to establish protocols for this.

Involve key stakeholders: Other suggestions include reviewing the current approaches to engaging the private sector in TB care and control, and redesigning these through consultations with key stakeholders, including healthcare professionals, NGOs, the pharmaceutical industry, etc.

The Government of India has rolled out a direct benefit transfer scheme for patients on TB treatment. This is a huge step in the right direction which will help TB patients complete their treatment and recover completely. However, the implementation of this scheme needs to be effective and translate on the ground.

Similarly, information and communication technology-based portals such as NIKSHAY (an online tracking system for TB patients) need to become broad-based and reach the grassroots for effective TB prevention and control. The government is also in the process of rolling out 99 DOTS, which offers a fixed-dose combination of TB medicines. This is another welcome step, although its implementation has been slow.

India needs to urgently address its private sector challenge if it wants to end TB by 2025. In the end, this will not be possible until every Indian has access to free, accurate and patient-centric care in both the public and the private sector. 

Saurabh Rane is a physician in Mumbai