Fighting disease

'I felt like my body was on fire': A TB survivor describes the excruciating pain of the cure

Dharavi resident Owais was one of the first people to be given Bedaquiline, one of the few drugs remaining to treat multi-drug resistant TB, in India.

For almost five years, Owais’ world has been restricted to a one-room house in Dharavi, Mumbai’s most famous slum, where he lives with his wife and two kids. A slight man, weakened by HIV and totally drug-resistant tuberculosis, Owais talks about his life and his romance with Mumbai earnestly.

Owais was one of seven children in an farming family from the Benipatti district of Bihar. He was the youngest and everyone’s favourite. His middle brother had migrated to Mumbai and Owais soon joined him, to study there. Unfortunately, they could not afford an English-medium education for him, while Owais had his heart set on it. “I was a fool then,” he says regretfully. "I felt if one didn’t have an education in English it would be pointless. So I didn’t study further. It was a big mistake."

While his brother went back to the village, Owais stayed on in Mumbai. He had fallen in love with the city and what it offered. “There was nothing to go back to in the village,” he says. He trained as a tailor and within a year found a job. “It’s a well-paying profession and I was very good at my job,” he says proudly. In 2003, he married Khursheed, who sits beside him as he narrates his story and corrects him occasionally. They have a boy aged 11 and a girl aged 9, who study at a nearby English-medium school.

In 2005, Owais had severe diarrhoea and was hospitalised. The cause could not be determined until Dr Jagtappa, under whose supervision he was , suggested an HIV test. It came back positive and Owais’s life changed altogether. “I have no idea how I got infected. I never had sex outside marriage and my wife is negative too” he insists. “I recall a doctor in the village used to inject us and didn’t change the injections. Perhaps I got it from there,” he says. Owais flatly denies any unsafe sexual behaviour or hospitalisation, although he admits to regularly getting tested for HIV. It’s unclear why. “I didn’t tell anyone but my wife about my HIV status,” he says, breaking down.

Owais had only begun coping with this change when in 2006 he began coughing. He went to Jagtappa who diagnosed him with drug-sensitive TB, a common infection amongst HIV-positive individuals. In March 2006, he was put on DOTS treatment. Despite counselling, Owais stopped taking the medication after a few months. “ I don’t know what got into me. I got better and I told them I won’t take any more drugs,” he recalls. As an afterthought he says “It was not pleasant going to that Center and waiting to be given your medication”. This is a constant refrain by many TB patients treated in the public sector and exposes how little trust the national TB programme puts in them.

Owais examines his scans. (Photo: Somya Parikh)
Owais examines his scans. (Photo: Somya Parikh)

A month later, his health deteriorated and he went back and restarted the TB medication. He recalls that he took category one drugs for almost two years. “I kept asking them if my TB was gone. They would say it’s improving,” he says of the DOTS centre at Sion Hospital, Mumbai.

In 2008, Owais fell sick again with high fever and constant vomiting and was hospitalised. The doctor at the DOTS centre said they could do nothing further for him and referred him to the infamous Sewri TB hospital. Owais panicked and tried desperately to find Jagtappa, who had moved to another practice and could not be reached. Owais then went to Dr Azharuddin a well-regarded doctor in Dharavi. Azharuddin took one, look at his test results and immediately sent him to Zarir Udwadia, India’s leading TB specialist.

After weeks of waiting, when Owais finally got an appointment with Udwadia, his tests revealed MDR TB. Under Udwadia, Owais witnessed substantial improvement: his weight increased, and within eight months he felt much better, “almost normal” he says. He recalls that he was better but his health deteriorated during the holy month of Ramzan, when his food habits led to decreased immunity.

The MDR treatment also affected his work . “I was getting slower” he recalls. His employer knew about his disease and was supportive. “It’s his kindness and the generosity of my brothers that has kept us alive,” says Owais. He had to stop working completely in 2010 because of the toxic side effects of medicines and growing weakness . He and his family have since been supported by his employer and his brothers. His treatment for TB, which was extremely expensive, was supported by the Mumbai charity, the Muslim Ambulance. The medication for HIV came from Medecins Sans Frontiers, Mumbai. “We could not afford to buy any medicines or get tests. I would have been a deadman otherwise,” says Owais pulling out X-rays, prescriptions and test reports crammed in bags detailing the extent of his disease.

The family never spoke to neighbours and friends about TB. Of course, discussing HIV was out of the question. If asked, the couple termed Owais’ poor health or cough as a seasonal allergy. “We had little kids. We didn't want people discriminating against us,” says Owais. His wife, sitting on the floor beside him, nods in agreement.

In 2010, after a few months of good health and reduced medication, Owais fell sick again and this time was diagnosed with extremely drug resistant (XDR) TB and put on category three drugs for treatment. The doctors also determined that part of his lung needed to be removed entirely to save him. The drugs had terrible side effects. “He lost his temper often did not realise what he was doing,” his wife tells me softly. His hearing was also affected briefly. Despite these challenges, Khursheed never considered giving up. “We had small children. It’s not like we had any choice,” she says matter-of-factly.

After the surgery, Owais’ condition improved. “I was almost back to normal, although I was still unable to work,” he recalls. The TB, however, came back. In 2012, multiple tests in revealed that he was resistant to virtually every drug available. The doctors at Hinduja had nothing to give him anymore. “We can’t do anything for you they said to me” he remembers. His case was one among the 16 that were reported as “totally drug resistant “by Hinduja doctors in a journal causing a media storm and a backlash from the Ministry of Health. For some months it seemed that the fight was over for Owais, as he continued his drugs, uncertain how long he would live.

In December 2012, a new TB drug called Bedaquiline was approved by the US FDA for TB treatment. It was given a fast track approval for use in cases of MDR and XDR. Udwadia requested the drug for Owais on compassionate grounds from its manufacturer and he was started on Bedaquiline on 19th February, 2013. This, the doctors told him, was his only hope. The drug had terrible side effects: “I felt like my body was on fire. I would get up in the middle of the night to bathe. Sometimes I couldn’t sleep for days. It was unbearable,” Owais recalls. His temper too took a turn for the worse Khursheed tells me. But, for the first time in eight years, his tests came back negative. In September 2013, he finished the Bedaquiline course and his tests came back completely clean. Despite this, Owais kept taking category three drugs because of the previous reappearance of the disease. In March 2015, he finally stopped TB drugs completely-almost a decade after he began treatment.

Sitting on the floor of his home, Owais tells me that even though he is unable to support his family, he is grateful that he is alive to see his children grow. He breaks down as he recounts details and incidents of kindness, particularly the unstinting support of his family. As our conversation ends, rain begins to fall relentlessly over Dharavi. The family sits together on the floor of their windowless home. The children want to go out and play in the rain but Khursheed stops them. Owais takes his son and daughter to go and sit by the doorway, to watch the the rain envelop Dharavi.

This story is an adapted excerpt from Voices from TB, a collection of TB survivor stories by Chapal Mehra. The author's work was supported by the Lilly MDR TB Partnership.

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What hospitals can do to drive entrepreneurship and enhance patient experience

Hospitals can perform better by partnering with entrepreneurs and encouraging a culture of intrapreneurship focused on customer centricity.

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Most of these tech enabled solutions have emerged as hospitals look for better ways to enhance patient experience – one of the top criteria in evaluating hospital performance. Patient experience accounts for 25% of a hospital’s Value-Based Purchasing (VBP) score as per the US government’s Centres for Medicare and Mediaid Services (CMS) programme. As a Mckinsey report says, hospitals need to break down a patient’s journey into various aspects, clinical and non-clinical, and seek ways of improving every touch point in the journey. As hospitals also need to focus on delivering quality healthcare, they are increasingly collaborating with entrepreneurs who offer such patient centric solutions or encouraging innovative intrapreneurship within the organization.

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Getting the best from collaborations

Speakers such as Dr Naresh Trehan, Chairman and Managing Director - Medanta Hospitals, and Meena Ganesh, CEO and MD - Portea Medical, who spoke at the panel discussion on “Are we fit for the world of new consumers?”, highlighted the importance of collaborating with entrepreneurs to fill the gaps in the patient experience eco system. As Dr Trehan says, “As healthcare service providers we are too steeped in our own work. So even though we may realize there are gaps in customer experience delivery, we don’t want to get distracted from our core job, which is healthcare delivery. We would rather leave the job of filling those gaps to an outsider who can do it well.”

Meena Ganesh shares a similar view when she says that entrepreneurs offer an outsider’s fresh perspective on the existing gaps in healthcare. They are therefore better equipped to offer disruptive technology solutions that put the customer right at the center. Her own venture, Portea Medical, was born out of a need in the hitherto unaddressed area of patient experience – quality home care.

There are enough examples of hospitals that have gained significantly by partnering with or investing in such ventures. For example, the Children’s Medical Centre in Dallas actively invests in tech startups to offer better care to its patients. One such startup produces sensors smaller than a grain of sand, that can be embedded in pills to alert caregivers if a medication has been taken or not. Another app delivers care givers at customers’ door step for check-ups. Providence St Joseph’s Health, that has medical centres across the U.S., has invested in a range of startups that address different patient needs – from patient feedback and wearable monitoring devices to remote video interpretation and surgical blood loss monitoring. UNC Hospital in North Carolina uses a change management platform developed by a startup in order to improve patient experience at its Emergency and Dermatology departments. The platform essentially comes with a friendly and non-intrusive way to gather patient feedback.

When intrapreneurship can lead to patient centric innovation

Hospitals can also encourage a culture of intrapreneurship within the organization. According to Meena Ganesh, this would mean building a ‘listening organization’ because as she says, listening and being open to new ideas leads to innovation. Santosh Desai, MD& CEO - Future Brands Ltd, who was also part of the panel discussion, feels that most innovations are a result of looking at “large cultural shifts, outside the frame of narrow business”. So hospitals will need to encourage enterprising professionals in the organization to observe behavior trends as part of the ideation process. Also, as Dr Ram Narain, Executive Director, Kokilaben Dhirubhai Ambani Hospital, points out, they will need to tell the employees who have the potential to drive innovative initiatives, “Do not fail, but if you fail, we still back you.” Innovative companies such as Google actively follow this practice, allowing employees to pick projects they are passionate about and work on them to deliver fresh solutions.

Realizing the need to encourage new ideas among employees to enhance patient experience, many healthcare enterprises are instituting innovative strategies. Henry Ford System, for example, began a system of rewarding great employee ideas. One internal contest was around clinical applications for wearable technology. The incentive was particularly attractive – a cash prize of $ 10,000 to the winners. Not surprisingly, the employees came up with some very innovative ideas that included: a system to record mobility of acute care patients through wearable trackers, health reminder system for elderly patients and mobile game interface with activity trackers to encourage children towards exercising. The employees admitted later that the exercise was so interesting that they would have participated in it even without a cash prize incentive.

Another example is Penn Medicine in Philadelphia which launched an ‘innovation tournament’ across the organization as part of its efforts to improve patient care. Participants worked with professors from Wharton Business School to prepare for the ideas challenge. More than 1,750 ideas were submitted by 1,400 participants, out of which 10 were selected. The focus was on getting ideas around the front end and some of the submitted ideas included:

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  • Online patient organizer: A web based app that helps first time patients prepare better for their appointment by providing check lists for documents, medicines, etc to be carried and giving information regarding the hospital navigation, the consulting doctor etc.
  • Help for non-English speakers: Iconography cards to help non-English speaking patients express themselves and seek help in case of emergencies or other situations.

As Arlen Meyers, MD, President and CEO of the Society of Physician Entrepreneurs, says in a report, although many good ideas come from the front line, physicians must also be encouraged to think innovatively about patient experience. An academic study also builds a strong case to encourage intrapreneurship among nurses. Given they comprise a large part of the front-line staff for healthcare delivery, nurses should also be given the freedom to create and design innovative systems for improving patient experience.

According to a Harvard Business Review article quoted in a university study, employees who have the potential to be intrapreneurs, show some marked characteristics. These include a sense of ownership, perseverance, emotional intelligence and the ability to look at the big picture along with the desire, and ideas, to improve it. But trust and support of the management is essential to bringing out and taking the ideas forward.

Creating an environment conducive to innovation is the first step to bringing about innovation-driven outcomes. These were just some of the insights on healthcare management gleaned from the Hospital Leadership Summit hosted by Abbott. In over 150 countries, Abbott, which is among the top 100 global innovator companies, is working with hospitals and healthcare professionals to improve the quality of health services.

To read more content on best practices for hospital leaders, visit Abbott’s Bringing Health to Life portal here.

This article was produced on behalf of Abbott by the marketing team and not by the editorial staff.