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Henry

2023-08-15 · story · John, Henry Reider · 7:01 · watch on YouTube

Topic: Global development · mode: Personal essay · tags: heavy topic, fundraising ask, civic or action cta, guest or collab, on location, self correction

John explains his tuberculosis obsession through Henry, a 16-year-old multidrug-resistant TB patient he met at Lakka in 2019 who was saved by a bedaquiline-based cocktail; after their 2023 reunion John asks viewers to follow Henry's YouTube and fund his mother's business, arguing survival should not require extraordinary efforts.

What is said

The parts of the video and what is said in each (★ — how much it matters to the video).

00:00:00 — Why John is obsessed with TB: meeting Henry at Lakka in 2019, his failing injectable treatment, his mother's losses and Dr. Tefera's effort to gather drugs

  • ★★★ John says people often ask him why he is obsessed with tuberculosis, and this video is why. — 00:00:00 · tuberculosis
  • ★★★ In 2019 John visited the Lakka TB hospital in Sierra Leone and met Henry, who shares his son's name and seemed his son's age; Henry showed him around, and John assumed he was a nurse's child. — 00:00:00 · Sierra Leone, Henry Green
  • ★★ A doctor told John that Henry was a patient they were very concerned about: Henry was 16, not nine like John's son; tuberculosis had ravaged his body. — 00:00:29 · tuberculosis, Henry Green
  • ★★ Before getting sick Henry was a great student who dreamt of university; his mother Isatu worked hard to pay his school fees with a small market business selling scented oils and perfumes. — 00:00:29 · Henry Green
  • ★★ When John met him, Henry was out of school and had been a full-time patient at Lakka for over two months, receiving injections for multidrug-resistant TB. — 00:00:58 · Henry Green
  • ★★★ John says the injectable TB treatment is very toxic: it causes permanent hearing loss in up to 20% of patients and also causes liver and kidney failure. — 00:00:58
  • ★★★ John says a better, less toxic treatment protocol built on bedaquiline had been available for years in the United States and other rich countries. — 00:00:58 · United States
  • ★★★ John says global health authorities deemed the bedaquiline protocol too expensive, so people like Henry could not get it. — 00:01:27 · health equity, Henry Green
  • ★ John says, per Dr. Tefera, even the injections were relatively new in Sierra Leone at the time. — 00:01:27 · Sierra Leone
  • ★★★ The injections were not working for Henry: he lost weight, TB-swollen lymph nodes became open wounds, and he bled so much he needed blood transfusions. — 00:01:27 · Henry Green
  • ★★ Girum Tefera (quoted): Dr. Tefera says that before Partners In Health came, a person in Sierra Leone with MDR-TB was just waiting for the time of their death. — 00:01:40 · Partners In Health, Sierra Leone
  • ★★★ Henry's mother Isatu paid the equivalent of thousands of dollars for his treatment, finding blood and supplies, and lost her business and apartment in the process. — 00:01:56 · Henry Green
  • ★★ Dr. Tefera came to Sierra Leone from Ethiopia a few months after John met Henry, and he too first took Henry for staff, since Henry kept encouraging and helping other patients. — 00:01:56 · Sierra Leone, Henry Green
  • ★★★ Henry's lab work showed the injectables had failed; Dr. Tefera later told John that, seeing no options, he thought they would lose the boy. — 00:02:26 · Henry Green
  • ★★ Henry knew how sick he was and what it meant: he had seen his best friend at Lakka die of multidrug-resistant TB after the injectables failed. — 00:02:26 · Henry Green
  • ★★★ Saying that in TB you have to keep trying, Dr. Tefera asked Partners In Health and the Sierra Leonean Ministry of Health to bring needed drugs from Liberia and Lesotho to save Henry. — 00:02:26 · Partners In Health, Henry Green, Sierra Leone

00:03:14 — John's TB obsession, the 2023 reunion with Henry and his cure with a bedaquiline-based cocktail

  • ★★ John says it was only one kid, but tell that to his mother, and maybe this one kid could be the first of many. — 00:03:14
  • ★★★ John came home from that trip obsessed with tuberculosis and spent the next few years learning about it, often thinking of and praying for Henry but never daring to ask what happened to him. — 00:03:14 · tuberculosis, Henry Green
  • ★★★ John says tuberculosis, though usually curable, still kills over 1.5 million people a year, more than malaria and HIV combined. — 00:03:14 · tuberculosis, malaria
  • ★★★ When John and Sarah returned to Lakka in 2023, John asked a nurse about Henry; she said he was there that day, wanting to see John, and they reunited. — 00:03:43 · Sarah Urist Green, Henry Green
  • ★★★ John says Henry was the first in Sierra Leone to get the bedaquiline-based cocktail; he recovered 'like magic', walking and laughing within three weeks, was cured and went home after over two years at Lakka. — 00:04:15 · Henry Green, Sierra Leone

00:04:42 — Henry today: university, dreams, new YouTube channel and Discord

  • ★★ Henry Reider: Henry says he is back to pursue his dreams and is so happy to be alive again. — 00:04:42 · Henry Green
  • ★★★ Henry returned to school and, with Partners In Health's support, studies human resources management at the University of Sierra Leone; he dreams of working in business and travelling. — 00:04:42 · Partners In Health, Henry Green, Sierra Leone
  • ★★ John says Henry has just started a YouTube channel and a Discord server, making videos of daily life in Freetown, community interviews and vlogs, and is excited to connect with the community. — 00:04:42 · YouTube, Henry Green

00:05:18 — Henry's four subscribers, his family's losses and Isatu's plan to restart her business

  • ★★ John notes Henry has only four subscribers on YouTube and thinks Nerdfighteria can bump that up. — 00:05:18 · Nerdfighteria, YouTube, Henry Green
  • ★★ As is common for TB survivors, Henry's life remains very hard: his family lost both their business and their home. — 00:05:18 · Henry Green
  • ★★ Isatu wants to restart her business selling food such as macaroni, sugar and cereal, which needs bulk purchases and costly market space. — 00:05:18

00:05:47 — The GoFundMe, and why Henry's survival should not have required extraordinary efforts

  • ★★★ John has started a GoFundMe to fund Isatu's business and help Henry lift his mother out of poverty. — 00:05:47 · Henry Green
  • ★★★ John says Henry is alive thanks to extraordinary efforts by himself, his family, charities, caregivers and government; he gets to have a YouTube channel, take tests and help his mom. — 00:05:47 · Henry Green, YouTube
  • ★★★ John says none of that should require extraordinary efforts: Henry should never have become so sick, cost his mother her savings, missed years of school, or been denied bedaquiline because of where he was born. — 00:06:16 · health equity, Henry Green
  • ★★★ John says all of that is still happening millions of times over to children around the world. — 00:06:16 · tuberculosis
  • ★★★ John says this is why he is obsessed with tuberculosis: the fight is worth it because of Henry, because he is here. — 00:06:46 · tuberculosis, Henry Green

In the description and comments

  • ★★ The description corrects the video: Dr. Girum says Henry was among the first to receive bedaquiline, not the first, but was the first to get a different drug that let him take bedaquiline safely. — video description · Henry Green
  • ★★ The description's update says Henry's fundraiser has closed after reaching all its goals and more, thanks donors and asks viewers to follow Henry's YouTube channel. — video description · Henry Green, YouTube
  • ★ The description thanks Henry, Dr. Girum Tefera and his Lakka colleagues, and Partners In Health for introducing John to Henry. — video description · Partners In Health, Henry Green

Threads in this video

Where the stories that moved here went next

Mentioned

Central: Bedaquiline · Henry Reider · tuberculosis

Also: People: Girum Tefera · Henry Green · Isatu · Sarah Urist Green

Organizations: Discord · GoFundMe · Lakka TB Hospital · Ministry of Health and Sanitation (Sierra Leone) · Partners In Health · University of Sierra Leone · YouTube

Concepts: health equity · HIV/AIDS · malaria · multidrug-resistant tuberculosis

Places: Ethiopia · Freetown · Lesotho · Liberia · Sierra Leone · United States

Also centred on Bedaquiline: Barely Contained Rage: An Open Letter to Johnson & Johnson · The Good News Video · Talking Tuberculosis, GeneXpert, J&J, and more with MY HEROES · An Incredible Update

Also centred on Henry Reider: ITS ALL HAPPENING · Poverty Is Expensive

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