India accounts for more than a quarter of the global burden of tuberculosis (TB), and for this reason is often called the TB capital of the world.1 In a recent report titled, India Health of Nation’s States, TB was listed as one of the top ten causes of death in the country.2 In recent years, the rapid emergence of multidrug-resistant TB (MDR-TB) – which does not respond to at least two of the most commonly used TB treatments – has made the situation worse.
In March 2017, the Government of India laid out its bold vision of eradicating TB by 2025 – five years ahead of the global target. There is significant work to be done if we hope to achieve this ambitious goal, and every one of us has a role to play. For our part, at Johnson & Johnson, we are collaborating with the Government and others to comprehensively address the challenge of TB. We firmly believe that stopping TB will take relentless focus, breakthrough innovation and crucially, collaboration across the entire health system.
A few weeks ago, Johnson & Johnson hosted a special event bringing together experts from government and non-governmental organizations, as well as patient advocates to talk about the critical role of multi-sectorial partnerships to support India’s vision to #ENDTB by 2025. During the program we heard first-hand the experiences of four inspiring women – Deepti, Debshree, Manasi and Prabha – who successfully overcame TB despite numerous hurdles, including misdiagnosis, late treatment and social stigma, and today are advocating for the benefit of others. We share their stories here.
Deepti was 16 years old when she was first diagnosed with MDR-TB. During a long six years of treatment, she had to undergo two surgeries and at the time, her doctor said that she had just a 1% chance of survival. he process of undergoing treatment left my family distraught. We experienced numerous social, economic and psychological challenges while I was fighting the disease”, explained Deepti. It took 400 injections, countless tablets, and the removal of an affected lung before she was finally declared TB-free. But her struggle motivated her to take up the cause of advocating and helping others.
The process of undergoing treatment left my family distraught. We experienced numerous social, economic and psychological challenges while I was fighting the disease.Share
Deepti has made several calls for quicker diagnosis and access to treatment for patients at high-level government meetings and public forums and today participates in community awareness programs.
As with Deepti, TB has taken an immense toll on Debshree, who lost both her hearing and speech during her fight against the disease. For her, TB hit at a critical point in her life, when she was about to embark on a move from her home in Pune to Ahmedabad to take up a dream job in architecture.
Diagnosed with MDR-TB after her first test, it was discovered that she was resistant to three of the four drugs in the standard four-drug regimen for MDR-TB. Within just six months, x-rays revealed the severity of the situation. Her left lung had been destroyed completely, and the other lung was infected as well, and sadly she reports that her doctor did little to try to save her lung. After three years of treatment, her condition continued to deteriorate and over time her weight dropped to 28 kgs. Hers was a case of late diagnosis; doctors subsequently categorized her TB as being totally drug-resistant (TDR).
Based on hospital test reports, I was prescribed a new set of medications. Fortunately for me, I could access one of the newer treatments through Janssen’s compassionate use program.Share
“I am an example of what delayed diagnosis can do,” she added. However, now things are certainly looking positive for her as she can hear again with the help of a cochlear implant, and she has been able to return to work full-time. Debshree is passionate about sharing her story as a reminder of the difficult realities associated with a drug-resistant TB diagnosis and the importance of early and accurate diagnosis.
Manasi was diagnosed with extensively drug-resistant TB (XDR-TB) at the age of 19, and at one point wanted to give up. “TB can consume your life. Until my diagnosis I was an extremely focused person and was hoping to stand out and achieve my goals. I felt invincible - like nothing could stop me. With TB, I felt everything was slipping away,” she recalled. However, watching her father battle the disease reinstalled her courage and lifted her spirit. Eventually, she underwent treatment, which included surgery, and just three months afterwards she completed a trek.
TB can consume your life. Until my diagnosis I was an extremely focused person and was hoping to stand out and achieve my goals.Share
Tackling a severe ailment like TB is nothing short of a long-drawn battle, and the challenge is often compounded when there are dependents to take care of. This was precisely the experience of Prabha, who had an 18-month-old child when she was first diagnosed with extra-pulmonary TB. TB changed her life, as she was separated from her child to avoid her contracting the disease, and she faced discrimination at her workplace. Unfortunately, doctors failed to mention to her that extra-pulmonary TB is not contagious.
Community interventions are important. There is a need to strengthen patient groups, because patients empathize or listen to survivors more than others.Share
Today, Prabha advocates for the cause as the Operations Manager for TB Control at ALERT INDIA, working tirelessly to counsel patients and families in the quest to fight TB. “Community interventions are important. There is a need to strengthen patient groups, because patients empathize or listen to survivors more than others,” she adds, reflecting on her own experience of defeating TB.
Deepti, Debshree, Manasi, and Prabha are inspiring women – not only have they successfully battled and overcome a devastating diagnosis, but today they are advocates for change. Their stories remind us that while the numbers are large, every TB diagnosis is a personal battle and one that is only won through strong partnership – between patient, doctor, family and community; and that’s exactly what is needed nationally if we are to truly #EndTB. At Johnson & Johnson, we salute their bravery and unwavering spirit to fight TB. It was our privilege to honor and celebrate their work – and today, we renew our commitment to be a leading partner in the country’s efforts to defeat TB.
Johnson & Johnson has been working hard to ensure access to and appropriate use of medicines for patients; researching and developing newer treatments alongside some of the brightest scientific minds in the country; and working to raise awareness, diagnosis and medical capacity in the health system.
Together, we can #MakeTBHistory.