The novel coronavirus has, understandably, taken much of the public’s attention over the past year. But there’s another global pandemic that requires urgent attention from researchers and innovators around the world: tuberculosis (TB).
This highly contagious infection is caused by bacteria spread from person to person through droplets in the air. And while most cases of TB can be cured with standard TB medicines, the complexity and long duration of treatment can be highly challenging for patients, especially those with drug-resistant forms of the disease (DR-TB). Of the 10 million people who become ill with TB each year, about 500,000 develop DR-TB, according to the World Health Organization.
COVID-19 has exacerbated these challenges: Lockdown orders and isolation requirements have kept TB patients from getting the lifesaving care they need, and the healthcare institutions providing that care have experienced disruptions in service.
The innovators here—all awardees of Johnson & Johnson Innovation’s DR-TB Lifeline QuickFire Challenge—have designed creative, easy-to-implement solutions that are already making an impact on DR-TB patients, helping them to continue receiving the care they need amid the COVID-19 pandemic.
In honor of World TB Day, we sat down with these innovators to hear more about their work and learn how the grant funding they’ve received can help advance their efforts to #EndTB.
Using Telemedicine and Delivery Services to Provide TB Care
Ravikant Singh, M.D., founder of Doctors For You, India
The idea: As the novel coronavirus spread throughout India and lockdown orders began preventing people from leaving their homes, Ravikant Singh, M.D., got a call from a patient in Mumbai. She was diabetic and had been recently diagnosed with DR-TB, and she couldn’t get to a pharmacy to pick up her medications. “Her blood sugar levels were out of control, and DR-TB medications need to be taken every day,” Dr. Singh says. “She asked if I could bring her the drugs she desperately needed.”
That’s when a light bulb went off. Yes, COVID-19 was presenting new roadblocks to getting medical care. But Dr. Singh’s experience working with DR-TB patients over the course of the last decade had shown him that people with TB are often hesitant to visit a doctor when issues come up.
“I realized what they needed was a dedicated health help line, where they could get their queries answered quickly,” he says. “Something like this would not only increase success for these patients but also help to prevent disease spread within households and communities.”
The impact: Doctors For You—the non-profit humanitarian organization Dr. Singh founded in 2007—devised a dedicated phone number with a WhatsApp feature that makes it easy for DR-TB patients to reach out for assistance. People who need a healthcare consultation get a call back from someone on the medical team. If patients need medications, but can’t leave home for them, a driver is sent with a delivery.
The telemedicine feature has been so successful, says Dr. Singh, that they’ve started using contact tracing methods for both COVID-19 and TB detection in an effort to identify who’s sick and isolate them immediately to prevent community spread. Dr. Singh also set up a dedicated ward for TB and COVID-19 co-infections, a crucial move considering TB patients have compromised lung function and tend to get more severe cases of COVID-19, he explains.
How the grant is helping to further his work: “We’re trying to extend our services to as many places as possible, to help more people get the treatment they need and ultimately avoid death,” Dr. Singh says.
While their DR-TB program started because of COVID-19, Dr. Singh is hopeful that it will go on long after the pandemic is over. “Our ultimate goal is to show the impact of what we’re doing in the next six to nine months so we can expand this type of program for other high-risk TB settings across India,” he says.
Helping People Overcome Treatment Obstacles—From One TB Survivor to Another
Olya Klymenko, Chairman of the Board of TBpeopleUkraine, Ukraine
The idea: When Olya Klymenko was diagnosed with DR-TB five years ago, her daughter was just 7 years old—and the two were separated. “Even though I should’ve had the option to be treated at home as an outpatient, I was hospitalized and my daughter was placed in a healthcare institution for children who had come in contact with TB,” she says. As a result, she lost everything—her daughter, her income as a restaurant owner and life as she knew it.
“Once I survived DR-TB and was reunited with my daughter after two years, I wanted to help other people affected with TB avoid what I went through,” Klymenko says. So she started volunteering at a TB organization in Kyiv. Within a year, Klymenko and a handful of other volunteers decided to create their own charitable organization—TBpeopleUkraine—to help those facing the same challenges Klymenko was able to overcome.
The impact: In the last three years, TBpeopleUkraine has developed a network of organizations that partner with nonprofits, government agencies and hospitals to hold support groups, host info sessions at TB hospitals in Ukraine and provide targeted assistance to children whose parents have TB.
They’ve also partnered with OneImpact, an organization that built a mobile app to support community-based monitoring of TB response and provide a patient-centered approach to treatment and care. Thanks to Klymenko, Ukraine became the first country in Eastern Europe to use the app, which provides science-backed information about the transmission, prevention and treatment of TB, as well as patient rights and video messages filled with advice, tips and encouragement from others who’ve had TB.
“When I was in the hospital, I quickly realized that nobody there knew anything about the many international programs and organizations trying to support people with TB,” Klymenko says. “So I set a goal for myself to do something about that. I never wanted another patient like me to have no idea where she could turn to for assistance after a TB diagnosis.”
How the grant is helping to further her work: The money received through the QuickFire Challenge is putting more volunteers on the ground, teaching TB patients how to use the OneImpact app and helping them access the resources available to them. Says Klymenko: “Thanks to this award, more families affected by TB will be able to overcome the barriers they’ll undoubtedly face.”
Designing an App to Help TB Patients Stick to Their Treatment
Subhi and Hilmi Quaraishi, co-founders of ZMQ and the Freedom TB Project, India
The idea: Brothers Subhi and Hilmi Quaraishi had one big goal when they founded their organization, ZMQ: develop mobile apps and other technology solutions for some of the world’s most pressing health challenges. “We study problems to look for the gaps and see how we can plug in a tech solution,” Subhi says. “After looking at DR-TB, we saw a major opportunity.”
Subhi and Hilmi found that the stigma and discrimination often experienced by those with DR-TB keep them from seeking and sticking to their treatment protocol. They also realized that most of the patients who dropped out of their treatment plans were very poor and living in remote villages, which made it near impossible to travel to healthcare facilities.
“We thought: If we can get patients mobile phones, then we can get them the app and they’ll have a private, easy way to connect with their doctors, who can ensure the delivery of medications,” Subhi says. “Also, we’d be able to provide them with tools that would motivate them to continue with their treatment. Because it’s easy to forget that a prescription for a medicine isn’t good enough. Patients need motivation—and reminders that following their treatment plan won’t just help them, but it will also prevent the spread of TB to their loved ones and the community.”
The impact: “Our app, the Patient’s Active Compliance and Treatment toolkit (PACT), supports patients in following and adhering to their daily treatment plan,” Subhi says. For example, when a patient takes his medication, he can click a button and his healthcare practitioners can use the app to see that he’s following his protocol.
What’s more, “we’ve created a video chat feature, so patients can have a face-to-face call with their doctors and doctors can call them, too,” Subhi says. “It’s working so well that the government has asked us to scale up our program in Mumbai and Delhi, where there are a lot of DR-TB patients.”
How the grant is helping to further their work: While the app has already helped hundreds of DR-TB patients, Subhi and Hilmi have been on a mission to refine it and get it into the hands of TB patients across the globe—particularly during the COVID-19 pandemic.
“The award will help us continue to make what we’ve created even better and scale it so that we can reach more people in India and hopefully Africa next,” Subhi says. “Without this infusion of funding, it likely would’ve taken another two to four years to get there. Now, we’re in a great position to take this technology—which has quickly become a lifeline for DR-TB patients—to the next level.”
Leveraging Video Therapy to Connect TB Patients With Their Doctors
Dessa Jean Casalme, M.D., De La Salle Medical & Health Sciences Institute, Philippines
The idea: As a DR-TB physician in the Philippines, Dessa Jean Casalme, M.D., knows first-hand how difficult it is for many TB patients to follow through with their medication and treatment protocol—a problem that’s only gotten worse due to the COVID-19 pandemic.
Enter a mobile app called SureAdhere, which can be downloaded to any phone. It uses Video Observed Therapy (VOT) technology that prompts TB patients to film themselves taking their medication using their smartphone. The videos are then uploaded to a secure web interface so that a healthcare worker can verify patients have taken their medication properly.
“We wanted to make it easier for patients to reach their healthcare providers through phone calls or texts, and we wanted to ensure those providers had a way of making sure their patients were complying to their treatment protocol,” Dr. Casalme explains. In fact, the app is designed to give real-time feedback to healthcare providers if a patient has missed a dose of their medication, so that the provider can reach out to see what the problem is.
The impact: Enabling patients to take their TB medications at home rather than traveling to a clinic is better for both patients and their community, Dr. Casalme says. “This technology eliminates in-person medication observation visits and allows increased access to treatment for patients who might be hard to reach,” she says. “Even better, patients have privacy and convenience—and since they’re staying at home, there’s less risk of TB transmission within their community.”
During the COVID-19 pandemic, this technology has been especially helpful.
Dr. Casalme recalls a 32-year-old patient who contracted DR-TB after giving birth last year. She was able to take two months of her prescribed medications—but once the novel coronavirus started spreading, her treatment center closed, and she stopped her treatment. “She started deteriorating quickly and became bedridden,” Dr. Casalme says. Luckily, this patient’s father was able to get her to a clinic that offered VOT, and the technology was a game-changer. “This man could be rest assured knowing his daughter would not only be taking her medications at home, but that she would be seen daily by a healthcare worker who’d be monitoring how she was doing,” she says. “She started improving quickly.”
How the grant is helping to further her work: Much of the funding will be used to provide the tools necessary for patients in need to continue treatment at home, including access to supporting technology, like mobile phones and free data, says Dr. Casalme.
“The more people we can reach the better, especially during the pandemic, when vulnerable DR-TB patients have a higher risk of getting COVID-19 whenever they step out of their house to go to the clinic,” she says. “Adherence to this app helps lessen the transmission of TB in the community, while also helping us reach our end goal of eradicating TB.”