Tuberculosis (TB) is one the world’s largest infectious diseases. It’s been around for centuries. It is also the largest cause of death for individuals living with HIV, killing close to 300,000 people each year. In many ways, TB is fueling the HIV epidemic. To be successful in addressing HIV, we have to address TB.

For most of my life, I didn’t even know that I had a very personal connection to TB. In 2016, my father was in the hospital. I was living and working in a different city, so I immediately traveled home to be at his side. He was very sick and I suppose it made him inclined to reflect on his life. He started talking about tuberculosis, of all things.

Here’s what he told me:

My dad was born in a very rural part of India. He is the oldest in his family, but he actually had six siblings before him who all died from TB. When he, too, was born with TB, my grandparents didn’t even name him because they assumed he would die. My dad’s name, “Bapu” literally means “boy” because that’s what they called him. Imagine, as a young child, having your entire family assume that you would not survive.

From his 2016 hospital bed, my dad showed me a scar on the side of his body. I had seen it before, but never knew what it was. He explained that he had had extra pulmonary tuberculosis (tuberculosis outside of the lungs), and that it manifested in the bones of his ribcage. At a young age, he had to undergo an excruciating operation to take out the infected rib. Even as he told me this — extremely sick and in a hospital — he still felt that no experience in his life was worse than having tuberculosis.

His current illness did, however, trigger a lot of past trauma for my dad. That sort of trauma is actually common among TB survivors. Once diagnosed, they must be isolated from their family for many months. They have to take dozens of pills each day. Sometimes, they experience side-effects more devastating than TB itself, like hearing loss, weight loss, or having their skin turn different colors. The side effects are terrible and the trauma is long-lasting.  

I can easily imagine my dad’s experience back then, because, in most cases, it’s the exact same as it would be today. There’s been very little progress. We still have inadequate resources for country TB programs. Years of limited investments in research have left us without safer treatments and prevention options. We still see so many deaths caused by TB. It’s a scourge that continues to affect a lot of my family in India as well as millions of people all over the world.

When you compare the fight against TB to the kind of progress we’ve seen in HIV — where we’ve had decades of investment — you can see why the TB community often feels neglected. But, looking at the response to HIV/AIDS shows us what robust investment can do. We have the tools to bring HIV under control. Of course, there’s not enough investment, nor are we reaching everyone with treatment. But we do have the tools, knowledge, and science to achieve an eventual end to the global HIV epidemic.

We still have a long way to go to do the same for tuberculosis.

In countries where we see a lot of tuberculosis among people living with HIV, you can also see the benefits of integrating treatment and care with PEPFAR (the President’s Emergency Plan for AIDS Relief). PEPFAR’s infrastructure has led to a lot of coordination, implementation, and increased awareness for both HIV and TB. Had my dad been near a PEPFAR site as a child, he would have had access to immediate care. Maybe his siblings and his mother would have survived. To have had health practitioners well versed in how to simply identify and treat TB would have been a game changer. Being able to receive sustained care — because it takes a long time to clear an infection —  were all things that he didn’t have in rural India.

What makes TB especially difficult is that the needs are so great, following so many decades of neglect. We need resources for research, programming, communities, and even developing basic healthcare infrastructure in the countries that are most impacted. It can seem like such a daunting task for policy makers.

As a result, we’ve largely ignored the problem for far too long. Now, we’re trying to backfill what we can with what amounts to pennies. Over time, the little money we have buys less and less, and the treatment gap widens.

Beyond limited resources, we also haven’t been creative enough. We still think in silos, making demands for individual diseases. If we think less vertically and more horizontally, we could leverage already successful infrastructure like that of PEPFAR. Where we have made cross investment in HIV with TB, it has proven to be highly effective. PEPFAR has been proven to be a successful, bipartisan, life-saving global health program. Increasing its resources would allow us to leverage its expertise and expand its efforts for TB. Most importantly, it would save even more lives.

There are hopeful signs on the horizon. In just the past few years, we’ve seen remarkable scientific advances in TB. We’re seeing new, highly effective regimens and less toxic treatment come online. And people can even take some of these treatments at home, rather than having to be in a healthcare facility. There is even a promising vaccine candidate advancing into Stage 3 trials. When you consider how long ago the last TB vaccine was developed (when the first Ford Model-T rolled off the assembly line), this is remarkable. And, it didn’t take a whole lot of money, relatively, to get us to this place.

The next step is putting the necessary resources into programming at PEPFAR and USAID in order to implement these scientific advances. If we don’t seed our future ability to implement these game changing innovations now, we may not see the fruits of those investments.

My dad’s experience was a driving force in my becoming a TB advocate myself. My hope is that, in a few decades’ time, I’ll be telling my own sons a very different kind of story than the one my dad shared with me. I want to tell them about how TB used to be an epidemic, but isn’t one any longer.