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In which John at last reveals why he is obsessed with tuberculosis. Links:
The YouTube Channel:
The Discord:
UPDATE: Henry's fundraiser has wrapped up after achieving all its goals AND THEN SOME. Thanks to all who donated! Please follow Henry's future on his YouTube channel!

Important correction: Dr Girum explained to me that Henry was among the first to receive befaquiline but not the first. He was the first to receive a different med that allowed him to safely take bedaquiline. I’m sorry for the error.

Thanks so, so much to Henry for his openness and generosity and friendship, and to Dr. Girum Tefera and his colleagues at Lakka for working so relentlessly in difficult circumstances to advocate for and treat people living with TB. Thanks also to everyone at Partners in Health for introducing to me to Henry and to their incredibly important work with TB survivors.

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Good morning, Hank, it's Tuesday.

So people often ask me why I'm obsessed with tuberculosis, and this is why. In 2019, I visited the Lakka Tuberculosis Hospital in Sierra Leone and met this boy, Henry, who shares a name with my son and seemed about the same age. Henry immediately began walking me around the hospital, showing me the grounds, and introducing me to various staff members and I thought he must be like a child of a nurse or something, but when I spoke later to one of the doctors, he told me, "Henry is a patient and one we're very concerned about." It turns out that Henry was not nine years old like my son, he was 16. It's just that his body had been ravaged by tuberculosis. So after I found out Henry was a patient, I asked him how he was feeling.

Henry: “Okay now.” 

But that turned out to be false hope. Henry had been a great student before getting sick. He dreamt of attending university and his mother, Isatu, worked incredibly hard to pay for his school fees. She ran a small business selling scented oils and perfumes at a local market. But by the time I met Henry, he was completely out of school and had been a full-time patient at Lakka for more than two months receiving these injections to treat his multi-drug resistant tuberculosis. The injection treatment is super toxic. It causes permanent hearing loss in up to 20% of patients. It can also cause liver and kidney failure, but it was the only option available to Henry. Now, there was a better and less toxic treatment protocol involving the drug bedaquiline that had been available for years in the United States and other rich countries, but it was deemed too expensive by global health authorities, and so, people like Henry couldn't access it. In fact, even the injections were relatively new in Sierra Leone at the time as Dr. Girum Tefera explained to me.

Dr. Girum Tefera: "Before PIH, if you have MDR-TB before 2017, it's just you are waiting for the time of your death."

And so the injections were an improvement, but unfortunately, they were not working for Henry. He began losing weight, the swelling from the TB invading his lymph nodes erupted into open wounds, and he was hemorrhaging so
much blood that he required blood transfusions. His mother, Isatu, had to pay the equivalent of thousands of dollars to support Henry's treatment, finding blood for blood transfusions and other supplies that he needed. And in the process, she lost her business and her apartment.

But right, about Dr. Tefera. He'd arrived in Sierra Leone a few months after I first met Henry from his home country of Ethiopia, and he also initially thought that Henry must either be like a staff member or a child of one because he was just so good at encouraging the other patients and he was so friendly and always helping everyone. But when he saw Henry's lab work, he became very very concerned because the injectables had clearly failed. He later told me, "When I saw that we have no option, that's when I thought we're going to lose this young kid." And Henry knew how sick he was and he also knew what it meant because he'd seen his best friend at Lakka die of multi-drug resistant tuberculosis after the injectables failed. But as Dr. Tefera told me, "In the field of TB, you have to keep trying."

So he called his colleagues at Partners in Health and the Sierra Leonean Ministry of Health and he was like, "Look, some of the drugs we need are in Liberia, some are in Lesotho. Is there any way that we can get them here together to help save this kid? Yes, it's only one kid, but, like, tell that to his mother and maybe this one kid can be the first of many."

I came home from that trip just obsessed with tuberculosis, a disease that, despite usually being curable, still kills over 1.5 million people per year, more than are killed by malaria and HIV combined. And I spent the next few years trying to learn about the disease and along the way, I often thought of and prayed for Henry, but I never had the courage to ask my friends at Partners in Health what had happened to him. But finally, when Sarah and I returned to Lakka in 2023, I asked one of the nurses there, "Do you remember a patient named Henry?" And she said, "Henry? Of course! He's here today, he wanted to visit to see you."

"Oh it's so good to see you!" [Greetings and remarks] "Alright!"

Henry became the first person in Sierra Leone to receive the bedaquiline-based cocktail and he improved extremely quickly. Dr. Tefera told me that it was like magic. Within three weeks, he went from what would have been his deathbed to walking and talking and laughing, and eventually he was cured. And after more than two years at Lakka, he was finally able to go home.

Henry: "Now, I'm back to pursue my dreams, to achieve it. I'm so happy to be alive again."

John: "Is that what it feels to be alive again?"

Henry: "Yeah."

Henry went back to school and thanks to support from Partners in Health, he's attending the University of Sierra Leone, studying Human Resources Management. He dreams of working in business and of traveling the world. Oh, and he's just started a YouTube channel and a Discord server. On YouTube, he makes videos showing daily life in Freetown. He also does interviews with people in the community and makes great vlogs. And he's really excited to connect with our community on YouTube and Discord and elsewhere. He currently only has four subscribers on YouTube, and if I know Nerdfighteria, I think we can bump that up.

But as is often the case with TB survivors, Henry's life remains really really challenging. I mean their family lost both their business and their home. I speak to Henry regularly and I told him that our community may be able to help out with that. Isatu really wants to restart her business, this time selling food like macaroni and sugar and cereal. But in order to do that she needs to be able to buy large quantities of those goods and then rent space in a market, which is expensive. So I've started a GoFundMe in the hopes of funding that dream and helping Henry lift his mother out of poverty.

Henry is here with us because of extraordinary efforts made by himself, by his family, by charities, by his caregivers, and by his government. He gets to be here he gets to have a YouTube channel and hopefully connect with lots of you and help you glimpse what his life is like. He gets to figure out Discord and take tests and hang out with his friends and try to help his mom. But none of that should require extraordinary effort. Henry never should have become so sick that his mother lost her life savings. He should never have missed years of school and he should never have been denied access to bedaquiline simply because of where he was born. And unfortunately, all of that is still happening millions of times over to kids around the world, and that's why I'm obsessed with tuberculosis. And I know it's worth the fight because of Henry, because he's here with us.

Hank, you'll find links to Henry's YouTube and Discord and fundraiser in the doobly-doo below. I will see you on Friday.