In 2020, the world’s deadliest infectious disease was, not surprisingly, COVID-19.
In the #2 spot? Tuberculosis (TB). And while that may not be obvious to people in countries like the United States where incidence of TB is very low, there are in fact nearly 2 billion people infected with TB worldwide. An estimated 10 million new cases of active TB were recorded in 2020 alone.
What makes these numbers even more jarring is the reality that TB is both preventable and curable.
For the last 20 years, Johnson & Johnson has been working to support global efforts to end TB, from advancing research and development efforts in the lab to expanding access to medication in high-burden countries.
Increasingly, some of the greatest collaborators in the fight against TB have been young leaders who are working tirelessly to raise awareness, research new treatments and advocate to ensure TB gets the focus and funding it deserves—all in an effort to end the disease within their lifetime. For World TB Day, we’re highlighting some of the freshest faces behind the #EndTB movement.
Channeling a personal TB experience to become a better doctor
Zolelwa Sifumba, M.D., Durban, South Africa
“It was 2012 and I was in my fourth year of medical school when I found a lump on my neck. I didn’t think much of it at first. Yet when the lump got bigger and painful, I got it checked out. The doctor mentioned that it looked like TB and did a biopsy.
Tuberculosis was something I studied, but I had no idea I was part of a high-risk group as a healthcare worker. So when I received a diagnosis of multidrug-resistant tuberculosis (MDR-TB)—a form of TB that doesn’t respond to the most powerful anti-TB drugs—I didn’t believe it. In an instant, I went from hanging out with my friends to pure shock and disbelief. When I looked up the statistics on MDR-TB, I found that only 40% of patients make it through. I knew this would be the fight of my life.
It was absolute hell. I used to say, ‘I don’t wish TB on my worst enemy’ because of how sick I constantly felt as a result of 18 months of intense treatment. Many times I felt like I was dying. I struggled to continue with med school.
Luckily, about a year into my treatment, I met people from an organization called TB Proof—a group of TB survivors based in the Western Cape of South Africa. This network saved my life. They also introduced me to advocacy and activism, helping me realize I could use my voice to help other TB patients feel better. I started speaking at universities and then international conferences. Hearing from others that they could relate to my story was so gratifying.
I was one of the lucky ones. The treatment worked and I am now TB-free. Because of my firsthand experience with the disease, I became a different kind of doctor. It showed me the degree of tenderness I had to show to my patients.
After working in the public sector for three years, I burned out. The occupational hazards of being a healthcare worker on the front lines are intense, from exposure to infectious diseases like TB to very long hours. Last year I became a clinical research fellow at the Africa Health Research Institute. Now, in addition to my TB advocacy work, I’m conducting research on patients who’ve been diagnosed with and survived TB. It’s all part of an effort to improve conditions for healthcare workers who are exposed to TB as well as the patients fighting for their lives.”
Researching new treatments for drug-resistant TB
Jennefer Wetzel, Senior Associate Scientist for Tuberculosis Biology Research in Global Public Health, Johnson & Johnson, Beerse, Belgium
“I grew up in Europe, where you never really hear about TB. When I tell people I work on TB, the response is usually something like, ‘Does that still exist?’
But before COVID-19, TB was the #1 infectious disease worldwide. And in far too many countries, people aren’t able to access the care they need for it. I learned this during an internship at the Janssen Pharmaceutical Companies of Johnson & Johnson, where I was placed with a group of scientists studying the biology of the bacteria that cause TB and the chemical compounds that destroy them. When my internship ended, I knew I wanted to continue studying these bacteria and new drugs designed to kill TB.
It’s challenging work. TB has a lot of what we call ‘rescue mechanisms’ that make it resistant to treatment. This is one of the reasons MDR-TB is on the rise and why a TB treatment regimen usually involves using at least three and sometimes up to seven drugs that have significant pill burdens. In my lab, we test which drugs help each other. We’re always aiming to get a combination that is even more effective at killing the bacteria.
Yes, we need to discover new and better drugs to treat TB. But everything that comes after that is also important—we need to get those drugs to clinics, make sure people with TB have access to those drugs and work toward quicker and more accurate diagnosis of TB and drug resistance.
This is why fighting TB requires so much collaboration. At Janssen, we partner with academia, consortia and other companies and rely on everyone’s expertise rather than trying to reinvent the wheel ourselves. We’re also training other scientists in countries where TB is prevalent so we can help them start to do their own research. We want to work together with everyone so we can end TB, collectively.”
Speaking out to end the stigma of TB
Saurabh Rane, Mumbai, India
“The statistics about TB are hard to wrap your head around. But I can tell you firsthand that when you become one of the approximately 10 million cases of TB that are diagnosed each year, you don’t feel like a statistic. You feel terrified.
I contracted extensively drug-resistant TB (XDR-TB) in 2013 when I was doing an internship for my degree in physical therapy. After a week of worsening symptoms, I went to the emergency department, and eventually tests confirmed it was TB. Unfortunately, my doctor at the time did not test me for drug resistance.
After six months of my condition worsening, I saw a new doctor who finally ran the right tests and later put me on a treatment protocol that worked. After three years of brutal side effects—I became partially blind for a month, experienced stomach and liver problems and dealt with jaundice—and upwards of 20 pills a day, a lot of persistence from my caregivers and a good bit of luck, I was healthy again. Considering doctors initially told me I had a 10% chance of survival, I am incredibly grateful.
What struck me as especially sad as I dealt with TB was the stigma that still surrounds this disease. You can catch TB anywhere. You can catch it sitting on a bus or driving in a fancy car. All of us have an equal chance of getting it.
Yet if you do get TB, you’re shunned. I’ve seen people thrown out of families, locked inside their homes and worse. Imagine getting TB and having to go through two years of treatment and the extreme side effects that treatment can cause all by yourself, having nobody to talk about it with except your doctor.
Given my medical background, I had some idea of what the disease is and what questions to ask—and still, I didn’t have the right diagnostic testing done immediately and was initially put on the wrong treatment. If this could happen to me, I realized it could happen to anyone, which is why I advocate to improve education about TB by working with affected communities, networks like Survivors Against TB and platforms like TEDx.
We must simplify the language about what this disease is and how to treat it. A lot of patients who contract TB can’t read, so we also have to put out videos and other information in more accessible formats. These materials also need to reach wider communities—not just patients themselves—so we can help others understand the disease and make them less likely to stigmatize those who contract it.
Ending the stigma is also going to take a lot of strong people coming out with their stories. It’s ironic that despite being one of millions of people affected by TB, you feel isolated and lonely if you get it. The most incredible moments in my advocacy work are when TB patients tell me I give them hope that they, too, can overcome the disease and live a normal life again. Even better, so many tell me they want to join the movement once the disease is behind them, too.”
Advocating for new resources to help address TB
Ganendra Awang Kristandya, Asia Pacific Regional Manager for the Global TB Caucus, Jakarta, Indonesia
“For as long as I can remember, TB has been a part of my life. I receive text messages weekly from friends and family who’ve tested positive. In Indonesia, we have the third-highest number of people affected by TB in the world.
Considering these facts, you’d think most of my peers would have TB on their radar. Yet the opposite is true. Most people here think it’s an ancient disease that’s well-controlled. They have no idea that TB kills more than 1 million people a year.
I’m on a mission to change this perception.
For the last three years, I’ve been the Asia Pacific Regional Manager of the Global TB Caucus, an international network of 2,500 parliamentarians who are working to tackle TB. I work closely with parliamentarians, ministries and civil society organizations from around the region to make sure TB is as high as possible on the health agenda. And I make sure that elected representatives are aware of our TB epidemic and are thinking about what can be done to end it.
One of our big pushes right now is to make sure TB gets adequate funding. Consider this: It would cost about 130 billion U.S. dollars to provide enough resources to address HIV, malaria and TB through 2026. That is no small sum! But when you think about the trillions of U.S. dollars that have been mobilized around the world for COVID-19 relief, you can see how what is needed to fight the TB epidemic is just a fraction of that. This is where my work comes in.
The COVID-19 pandemic has set back TB efforts significantly. During the pandemic, many people with TB were afraid to go to the hospital because they didn’t want the double burden of TB and COVID-19. We saw a significant decline in people accessing treatment. We also saw a reduction in the number of on-the-ground TB services. Understandably, healthcare workers needed to focus on COVID-19 since that was the priority. Yet in the process, TB services were neglected and became less efficient and effective than they were prior to the pandemic.
I’ve been so inspired by the level of resilience and strength shown by those affected by TB. On the other hand, it makes me angry that TB is still such a big problem in our modern world.
I’m hopeful that change will happen. Yes, we have a long way to go. But I believe there is a light at the end of the tunnel. The light is coming from each one of us working to address the TB epidemic. And I’m confident that together, we can light up the darkness.”
