The human side of tuberculosis: Patients’ stories fuel scientists’ resolve
Tuberculosis is not something most people living in Texas think about, especially not as a vibrant teenager.
For Genesis Avila, it began with a persistent feeling of weakness in her senior year of high school. She went to a family physician, who gave her iron supplements that did not help. Her next visit was to a hospital emergency room, where doctors gave her antibiotics, again with little effect. She remained exhausted and coughing and had frequent night sweats; she couldn’t eat and simple self-care like washing her hair would tire her. Months passed and she blamed anxiety. Finally, she got sick enough at a school field trip that she was rushed to a hospital, where doctors said she had pneumonia. Tests there finally gave her a firm diagnosis: she had tuberculosis (TB). Avila was stunned.
“When they found it, I was like, ‘What is TB? What is this?’ I thought it was just the cold,” she said. “They started explaining the symptoms. I realized that’s exactly what it is. And it blew my mind, because I thought it was just a cold. But that’s the thing with TB. It’s a very sneaky disease.”
I thought it was just a cold. But that’s the thing with TB. It’s a very sneaky disease.
GeneSIS Avila
Avila and others who have been treated at San Antonio’s Metro Chest Clinic and the Texas Center for Infectious Disease – the only free-standing hospital dedicated to TB in the U.S. – shared their personal stories with Texas Biomed researchers at a conference last fall. This provided the scientists, who are typically working in the lab surrounded by data from cellular and molecular experiments and animal models, an uncommon opportunity to hear directly from the people who stand to benefit from their efforts to find better ways of diagnosing and treating TB.
“It’s important that voices of the patients who actually are being impacted by the disease are heard,” said Lisa Armitige, M.D., Ph.D., who is the Medical Director of the Metro Chest Clinic and co-Medical Director of the Heartland National TB Center, which provides education and treatment recommendations for TB cases all over the country.
Hub for TB research
The patient conference is a key feature of Texas Biomed’s Interdisciplinary NexGen TB Research Advancement Center (IN-TRAC), which aims to nurture the next generation of scientists studying TB. The National Institutes of Health launched a handful of such centers in 2022, selecting Texas Biomed to lead one as a recognized hub for TB research with deep expertise, specialized facilities and strong collaborations across South Texas.
“Hearing the personal stories of TB survivors from my community made the disease real in a way that numbers and papers never could,” said Staff Scientist Chrissy Leopold Wager.
From left to right: Staff Scientists Chrissy Leopold Wager, Ph.D., and Susanta Pahari, Ph.D., study tuberculosis in the lab of Professor Larry Schlesinger, M.D.
Texas Biomed scientists said the patient conference gave them insight into the human impact of their work.
“Hearing the personal stories of TB survivors from my community made the disease real in a way that numbers and papers never could,” said Staff Scientist Chrissy Leopold Wager, Ph.D. “Knowing that the work we do matters to them has brought a new urgency to my research in the lab and a deeper personal satisfaction in the work I do every day.”
Research Assistant Ashley Gay-Cobb agreed: “Their stories gave me renewed drive to pursue meaningful research and become a stronger voice against the stigma that still surrounds TB.”
Not ‘over there’
TB is a complex disease caused by a highly transmissible virus and is one of the leading killers worldwide. More than 10 million people are infected every year and 1 million die from the disease. An estimated 13 million people are living with inactive, or latent, TB.
Infections are not just in developing nations. Texas is one of the top two states in the U.S. with TB cases. In 2022, almost 1,100 Texas residents were diagnosed with TB and 50 people died from the disease, according to the Texas Department of State Health Services.
“TB is not a phenomenon ‘over there’. It’s actually over here,” said Larry Schlesinger, M.D., Texas Biomed’s President/CEO, whose research lab is focused on tuberculosis.
Treatment challenges
Avila’s story highlights how that misconception is a major challenge when it comes to treating TB.
“Physicians do not always think TB; it is as simple as that,” Dr. Armitige said. “So here at Texas Biomed and with collaborators, we’re working on better tests to diagnose TB. That is really a challenge, but we also really need to have physicians think their patients may have TB, so they can apply those tests.”
A large team helped Avila with treatment once she got the proper diagnosis. Being treated for TB, even through the premier facility in the nation, is grueling. Months of isolation. Months of taking a dozen pills a day that stamp out the bacteria but come with harsh side effects.
Dr. Lisa Armitige underscores how challenging it is to have to take so many pills for such a long time.
A typical number of pills that patients with TB must take every day for six to nine months.
Avila explained that she is doing better now, but her lungs are scarred, and she still tires easily. She was able to graduate from high school, and this year began training to become a dental hygienist.
“I had so much support from my family and from my church family,” she said. “I am very happy and very grateful.” She feels the journey has made her stronger emotionally and drawn her closer to her family.
Healing and inspiring
Avila welcomed the chance to share her story with researchers.
“First, I want to show my gratitude to each and every one of you in this room,” she told scientists at the IN-TRAC conference. “I am beyond grateful that I can talk to you, that you want to listen to our stories, because it heals a part in us that was hurt.”
Patients who have been treated for TB share their experiences with researchers who study the disease during the IN-TRAC Patient Conference at Texas Biomed.
For Staff Scientist Susanta Pahari, Ph.D., hearing from Avila and the other patients was truly inspiring. “Their incredible resilience motivates us to tirelessly pursue effective vaccines and therapies,” he said. “Together, we can make a difference.”
Scientists have much work to do, including more research to understand drug-resistant strains, as well as finding better therapies that can shorten treatment times, and more effective vaccines.
“There are more people like us who need you, who need your drive to make this a better world, a healthier world,” Avila said. “I know it’s going to get better, because you guys are here. You have that passion, you have that drive, you have that love.”
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