In this episode of NPR's Book of the Day, John Green brings tuberculosis—a disease once viewed as a "flattering malady" signaling wealth and intellect—to the forefront of discussion. Drawing from his experiences advocating for increased global access to tuberculosis treatments, Green sheds light on the devastating impacts of this deadly respiratory illness on individuals and populations worldwide.
Green explores how tuberculosis has shaped cultural movements, influenced fashion trends, and continues to claim millions of lives due to inequitable access to costly medications and preventative care. While detailing his advocacy efforts to reduce drug prices, Green emphasizes the moral imperative of ensuring life-saving tuberculosis treatments reach the impoverished nations most affected by this curable disease.
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Tuberculosis, or consumption, was seen as a "flattering malady," John Green notes, as its resulting paleness conveyed intellectual sensitivity and higher social class. The disease influenced population movements, with Americans seeking relief in the West's curative air. Tuberculosis even shaped fashion - the cowboy hat was invented by a milliner seeking a climate-appropriate style while curing his own case.
Tuberculosis brings agonizing respiratory distress, as sufferers struggle to breathe. Green describes the experience of breathing "through a straw" as distressing and depleting for patients. The disease also stunts growth - Green was struck seeing a 17-year-old who appeared 9 due to malnutrition and illness. Despite being curable since the 1950s, tuberculosis has claimed over 150 million lives worldwide - a mark of shame, Green says.
New TB drugs are too costly for the impoverished countries most impacted, Green explains. Malnutrition also worsens outcomes by hindering treatment's effectiveness. However, advocates like young Indian activist Shreya have sued for drug access, and organizations like TB Fighters pressure pharma companies to slash prices, increasing global availability.
Green was inspired by meeting young patient Henry in Sierra Leone, realizing tuberculosis' modern toll despite thinking of it as "old-timey." Green and fans successfully pushed for over 50% price drops on a key TB drug from Johnson & Johnson. He stresses global health's interconnectedness and the moral duty to ensure equitable, life-saving care access worldwide.
1-Page Summary
Tuberculosis, a disease with a rich and impactful history, has left an indelible mark on culture and society, influencing everything from population movements to fashion.
In the 1800s, tuberculosis, also known as consumption, was not just feared for its deadly impact but also carried a peculiar cultural cachet. It was referred to as the "flattering malady," because it was considered a sign of someone's sensitive and intellectual nature. The disease often resulted in a pale and slender appearance, which at the time was associated with a delicate, artistic temperament and a higher social class.
The pervasive threat of tuberculosis dramatically influenced population movements within the United States. During this period, New Mexico and other states in the West saw an influx of settlers. It was widely believed that the clean mountain or desert air could offer a respite for those afflicted by the disease, prompting individuals to relocate in the hopes of finding a cure or at least experiencing an alleviation of symptoms.
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The History and Cultural Impact of Tuberculosis
Tuberculosis (TB) is not just a disease but a scourge that has deeply affected individuals and populations for centuries. Even after becoming curable in the mid-20th century, TB continues to claim lives and cause heart-wrenching suffering.
For those afflicted with tuberculosis, the physical experience can be agonizing. Sufferers often face extreme difficulty in drawing breath, a sensation described akin to trying to breathe through a narrow straw or into a pillow, which is distressing and energy-depleting. This struggle to breathe represents just one of the many debilitating effects of the disease on a person's body and quality of life.
The metaphor of breathing through a straw aptly captures the sense of suffocation and exertion that TB patients endure. The inability to take a full, cleansing breath impacts not just the physical health but also the emotional well-being of patients, making everyday activities and rest a challenge.
The ravages of tuberculosis are not limited to respiratory difficulties. For young people like Henry from Sierra Leone, TB can severely stunt growth due to the compounded impact of malnutrition and illness. John Green observed that although Henry was 17 years old, his physical appearance was that of a nine-year-old—the same age as Green's son—showcasing a stark visu ...
Devastating Effects of Tuberculosis on Individuals and Populations
The global struggle against tuberculosis (TB) is marred by a stark dichotomy in treatment accessibility. People in impoverished countries suffer more due to the high cost of new TB drugs, which are often priced out of reach for those in low-resource settings. This disparity in access results in preventable suffering and death in populations that need these medications the most.
Compounding the adversity faced by those fighting TB in poor countries is the issue of malnutrition and food insecurity. As TB survivors like Henry have unfortunately experienced, many of the medications required for treatment must be taken with food to be effective. However, global health authorities often overlook the necessity of food in the TB treatment regimen, not treating it as medicine. Malnutrition, therefore, exacerbates the condition, hindering recovery and health restoration for those without sufficient access to food.
In an inspiring demonstration of advocacy, a young Indian activist named Shreya took bold action against inequitable access by suing the Indian government for access to a vital TB drug known as Bedaquiline. John Green talks about this critical case, detailing Shreya's heartbreaking fight, which she won, thus paving the way for the drug to become accessible to tens of thousands, if not hundreds of thousands, of others despite being too late for her own damaged lun ...
Inequitable Access to Tuberculosis Treatment and Prevention
John Green, known for his work as an author, has a personal connection to tuberculosis which has inspired a significant advocacy effort in partnership with organizations like Partners in Health.
John Green’s great-uncle, Stokes Goodrich, died of tuberculosis at the age of 29, a fact that influenced Green's perception of the disease. It was not until Green encountered a young patient named Henry at a tuberculosis hospital in Sierra Leone, who had been living with multidrug-resistant tuberculosis, that he fully grasped the contemporary reality and inequity associated with the disease.
Green once thought of tuberculosis as an “old-timey” disease, associating it with historical figures or characters from British literature. His experience meeting Henry, who was deeply impacted by not being able to take a full breath to calm his fears when he was sick, changed Green’s understanding. Henry continued to inspire others at the hospital with his resilience and determination despite being ill and facing resource challenges.
John Green's work with Partners in Health is dedicated to improving access to tuberculosis treatments.
Green, supported by ...
John Green's Experiences and Advocacy Work on Tuberculosis
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