Tuberculosis Survivor: “Everyone should be advocating to end TB by 2030”

Nearly 150 years after its discovery, tuberculosis – a preventable, treatable, and curable illness – continues to be the most common cause of death for people living with HIV (PLHIV). While PLHIV are 20 times more likely to become sick with the illness, TB also led to the death of approximately 1.13 million HIV-negative individuals in 2022 alone. In fact, since 2020, only COVID-19 has outpaced TB in the number of human lives claimed by an infectious disease.

Despite efforts from programs such as the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), the Global Fund to Fight AIDS, Tuberculosis, and Malaria, and USAID, the worldwide TB response is falling short. Increased awareness and funding for programs like these are critically needed if we are to realize the goal of eradicating TB – along with HIV – by 2030.

Ahead of World Tuberculosis Day (March 24), we spoke with Maggy, a TB survivor who gave us permission to share her story. She has asked us not to include her full name. Below, read our interview with Maggy to learn about her journey with TB and find out which actions she believes are most crucial in the effort to end the epidemic once and for all.

As a survivor of tuberculosis, what do you want world leaders to know about the disease?

I would say TB still requires significant attention and resources as a serious and deadly disease. It’s critical to invest in TB detection and treatment around the world, especially in countries that lack the resources we have in places like the U.S. There is an urgent need to strengthen healthcare systems in these high-burden countries, a cause we advocate for fervently, aiming to bring hope and support to survivors and their families.

I believe it’s important for everyone to see themselves as potential advocates against TB. TB has a profound impact on individuals, families, and economies. The impact of the disease doesn’t stop with the patient. It cascades through families and communities. That’s why we need to get the scientific, legislative, and advocacy communities involved more urgently.

Access to TB diagnosis and treatment remains a challenge in many parts of the world, including my home country, where an estimated 53% of TB patients were not diagnosed or linked to care in 2019. This gap underscores the immense work that still needs to be done to end TB, which requires global solidarity and action.

Can you share a bit about your story of surviving tuberculosis?

My journey with tuberculosis began in 2019, during an ordinary day at work. I suddenly experienced partial blindness, a frightening symptom that led me to seek immediate medical attention at the emergency room. At first, the medical team was perplexed by my symptoms, and it wasn’t until I started having severe chest pains that they suspected pneumonia and ordered X-rays.

The next day, a physician inquired about my heritage, which started a new avenue of investigation. Upon learning that I was from Africa, he immediately ordered additional tests, which led to the definitive diagnosis of tuberculosis.

I immediately began treatment –  a nine-month regimen that included taking approximately 14 pills daily. This is a standard TB treatment protocol that has remained largely unchanged for a century. In fact, I was in isolation for two years, facing physical and emotional challenges.

I understand there was a domino effect within your own family. Can you tell us about that?

In my culture, we are raised to take care of our loved ones. In my family, specifically, care and support runs deep. When my sister discovered that she was HIV positive, I knew instinctively that I had to step forward to help. Witnessing the stigma she faced, I was determined to protect her and make her feel better. She also had a baby at that time, so I assumed the role of caretaker for both my sister and her child.

Much later, TB entered our lives and added a new burden. Neither of us were educated on the prevalence of TB or the necessary precautions. All I knew at that point was to support my sister through her HIV journey. There were plenty of HIV/AIDS awareness campaigns trending at the time. It wasn’t complicated for me – I knew how to avoid contracting HIV while taking care of her. But with TB, I had no idea. Little did I know that TB was hidden in the background and can be latent for years.

Years later, the realization of the precautions we should have taken weighed heavily on my conscience. The doctor’s revelation that I had likely contracted TB during those traumatic years came as a shock. It shed light on a silent threat that had been latent in my system. After rigorous treatment regimens, both my sister and I emerged as TB survivors, bonded by our shared experiences.

What specific actions do you think are important for advocates to push for in the fight to end TB?

For most of the survivors and former patients like me who have become advocates, there’s a strong push for shorter, more manageable treatment regimens and advanced TB diagnostics. The journey through treatment is arduous; I can attest to that firsthand. I was fortunate enough to start treatment early, but it wasn’t without its hurdles, including multiple visits to the emergency room. As I said, the treatment itself lasted about nine months, but I was isolated for almost two years. That length of isolation really takes a toll on your mental health, a reality that’s become more widely understood in the wake of COVID-19.

How can the U.S. be a stronger leader against TB?

I think a lot is already being done – the U.S. has made significant progress, particularly through initiatives such as PEPFAR, which integrates TB diagnosis into its HIV treatment programs and has a positive impact in high-burden countries. However, the urgency in the fight against TB needs to be matched by what has been done in the fight against COVID-19. I recall a speaker at a recent conference drawing parallels between the two and criticizing the comparatively lax attitude toward TB. It’s critical to recognize TB as a curable disease and take the same proactive approach we’ve seen with COVID-19.

Many global health organizations have signed a pledge to end TB by 2030. Are you optimistic about meeting this goal?

I’m optimistic by nature. With the will, we can make it happen – look at COVID and HIV. The progress made in treating diseases like HIV/AIDS, where treatment has gone from a daily pill load to a single pill, shows what’s possible. It makes all the difference for patients.

So, it’s feasible. It’s about collective will, compassion, and understanding the multifaceted impact of TB – the burden of the disease is exacerbated by social, psychological, economical, and clinical prejudice – and in the long run, it’s costly. To make significant progress, our efforts must be holistic, addressing not only the disease but also the stigma, discrimination, and mental health challenges that accompany it. We need to work to reduce the length of treatment and isolation. We need to work to reduce the risk of drug resistance. We need to focus on how to win this battle by partnering with all stakeholders and by working effectively and in synergy with survivors and patients.

On World Tuberculosis Day, what message do you most want to share?

I want to emphasize that the tuberculosis fight is everybody’s fight. I urge everyone to take on the role of advocate – whether it’s simply by listening or supporting patients, raising awareness, or financial contributions  – there’s always something to do. Ending TB by 2030 is not just a goal, it’s a necessity, and it requires the involvement of all of us.

Last year, Elizabeth Lovinger and Jenni Maple reminded the world that we know how to end tuberculosis. This year, GAPP is joining Maggy in asking you to advocate for an end to this epidemic. The eradication of TB would mean a safer world for all of us, but especially for people living with HIV.

With better access to testing, increased research to shorten treatment, and adequate funding for global health programs like PEPFAR and The Global Fund, we can and will end tuberculosis by 2030.