Podcasts > NPR's Book of the Day > In 'Everything Is Tuberculosis,' John Green turns his attention to a deadly disease

In 'Everything Is Tuberculosis,' John Green turns his attention to a deadly disease

By NPR (podcasts@npr.org)

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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In 'Everything Is Tuberculosis,' John Green turns his attention to a deadly disease

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In 'Everything Is Tuberculosis,' John Green turns his attention to a deadly disease

1-Page Summary

The History and Cultural Impact of Tuberculosis

Tuberculosis Once Considered "Flattering" in the 1800s

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.

Devastating Effects of Tuberculosis on Individuals and Populations

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.

Inequitable Access to Tuberculosis Treatment and Prevention

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.

John Green's Experiences and Advocacy Work

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

Additional Materials

Actionables

  • You can deepen your understanding of tuberculosis's historical context by reading novels and watching films set in the 1800s that portray characters with the disease. This will give you a sense of how tuberculosis was romanticized and how it affected societal perceptions, without needing any specialized knowledge in history or medicine.
  • Start a book club or discussion group focused on global health issues, using novels like John Green's works as a starting point. This encourages conversations about the moral implications of healthcare access and can lead to collective action, such as writing to pharmaceutical companies or supporting organizations that advocate for affordable medication.
  • Volunteer with or donate to local food banks and nutrition programs, recognizing the link between malnutrition and tuberculosis outcomes. By contributing to efforts that combat malnutrition, you're indirectly supporting the fight against tuberculosis and other diseases that are exacerbated by poor nutrition.

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In 'Everything Is Tuberculosis,' John Green turns his attention to a deadly disease

The History and Cultural Impact of Tuberculosis

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.

Tuberculosis: Historical Prevalence and Cultural Impact

Tuberculosis Once Seen As a "Flattering Malady"

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.

Population Movements for Curative Air in the American West

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.

Tuberculosis Influenced Cultural Artifacts Like Cowboy Hats Due to Attire Adaptation

...

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The History and Cultural Impact of Tuberculosis

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Counterarguments

  • While tuberculosis may have been romanticized by some as a "flattering malady," this perspective overlooks the severe suffering and high mortality rates caused by the disease, which affected individuals across all social classes.
  • The belief in the curative properties of the air in the American West was based on medical theories of the time, but it should be noted that this was not a scientifically proven treatment and many people continued to suffer from tuberculosis despite relocation.
  • The connection between tuberculosis and the creation of the cowboy hat by John B. Stetson is ...

Actionables

  • Explore the therapeutic effects of nature by planning a trip to a location known for its clean air and serene environment, much like the 19th-century individuals who traveled for the 'curative air.' This could be a mountain retreat or a coastal getaway where you can experience the restorative benefits of fresh air and tranquility.
  • Create a personal accessory or piece of clothing that serves a functional purpose inspired by your own health journey or lifestyle needs, similar to how the cowboy hat was born out of a necessity for protection. For example, if you spend a lot of time outdoors, you might design a multi-functional scarf that can be used for warmth, sun protection, or as a makeshift mask.
  • Reflect on how historical perceptions can influence modern views ...

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In 'Everything Is Tuberculosis,' John Green turns his attention to a deadly disease

Devastating Effects of Tuberculosis on Individuals and Populations

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.

Tuberculosis Debilitates, Causing Sufferers to Waste Away and Struggle to Breathe

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.

Breathing "Through a Straw" Is Distressing For Patients

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.

Tuberculosis Stunts Growth: Young Patient Henry Malnourished, Appears Younger due to Disease

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 ...

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Devastating Effects of Tuberculosis on Individuals and Populations

Additional Materials

Counterarguments

  • Tuberculosis treatment and prevention have improved significantly, and many countries have successfully reduced TB incidence rates through effective public health strategies.
  • The high death toll from tuberculosis is not solely due to a lack of access to treatment but also due to factors such as co-infection with HIV, drug resistance, and social determinants of health that complicate disease management and eradication.
  • While tuberculosis can stunt growth in young individuals, this is not an inevitable outcome, and with proper nutrition and treatment, many young patients can recover and catch up in growth.
  • The metaphor of breathing through a straw may not accurately represent the experience of all TB patients, as symptoms can vary widely in severity and nature.
  • The statement that the death toll from tuberculosis is a "great mark of shame in human history" could be seen as a simplification that does not fully acknowledge the complex socio-economic and healthcare challenges faced by different regions in addressing TB. ...

Actionables

  • You can raise awareness by sharing personal stories on social media to humanize the impact of tuberculosis. Create a series of posts that detail the experiences of individuals with tuberculosis, focusing on the challenges they face, such as the difficulty in breathing and the effects on young people's growth. Use hashtags to connect with broader health awareness campaigns and encourage others to share their stories or information about tuberculosis.
  • Volunteer your time with local health organizations that focus on tuberculosis. Offer to help with administrative tasks, community outreach, or support services for affected individuals. This direct involvement can provide practical assistance to those in need and contribute to the efforts to make treatments more accessible, especially in impoverished communities.
  • Educate you ...

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In 'Everything Is Tuberculosis,' John Green turns his attention to a deadly disease

Inequitable Access to Tuberculosis Treatment and Prevention

Tuberculosis Impacts Poor Countries More Due To Limited Medicine Access

New Tuberculosis Drugs Priced Out of Reach for Low-resource Settings

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.

Malnutrition and Food Insecurity Worsen Tuberculosis Impacts

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.

Advocacy Improves Tuberculosis Treatment Access, yet Inequities Remain

Young Indian Activist Shreya Sues For Access to Vital Tuberculosis Drug, Highlighting Patient-Led Efforts in Treatment Disparities

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 ...

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Inequitable Access to Tuberculosis Treatment and Prevention

Additional Materials

Counterarguments

  • The high cost of new TB drugs may be due to the significant investment in research and development, which pharmaceutical companies need to recoup to fund future innovations.
  • While malnutrition and food insecurity do exacerbate TB, improving access to food alone may not be sufficient without addressing the root causes of poverty and lack of healthcare infrastructure.
  • Legal actions like Shreya's lawsuit can lead to increased access to drugs, but they may also have unintended consequences, such as pressuring governments or companies to make decisions that could impact the sustainability of drug supply or development.
  • Patient-led initiatives are important, but they may lack the resources and expertise n ...

Actionables

  • You can support TB treatment access by purchasing and wearing awareness merchandise from organizations like TB Fighters, where proceeds go toward advocacy and patient support. By wearing a bracelet or t-shirt, you not only contribute financially but also spark conversations and spread awareness about the need for affordable TB treatments.
  • Start a virtual book club focused on novels and memoirs that deal with TB and its social implications, using the discussions to educate and engage your social circle about the disease. This can be a subtle way to inform and inspire others to take action, such as writing to legislators or supporting relevant non-profits.
  • Volunteer your time ...

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In 'Everything Is Tuberculosis,' John Green turns his attention to a deadly disease

John Green's Experiences and Advocacy Work on Tuberculosis

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.

Green's Personal Connection to Tuberculosis, Inspired by Losing a Great-Uncle and Meeting a Young Patient Named Henry In Sierra Leone

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 Thought of Tuberculosis as an "Old-timey" Disease Until Meeting Henry

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.

Green Advocates for Better Tuberculosis Treatment Access With Partners in Health

John Green's work with Partners in Health is dedicated to improving access to tuberculosis treatments.

Green and Fans Pressured Pharma to Lower TB Drug and Diagnostic Prices for Wider Availability

Green, supported by ...

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John Green's Experiences and Advocacy Work on Tuberculosis

Additional Materials

Actionables

  • You can deepen your understanding of global health issues by reading personal stories from those affected. By seeking out memoirs, blogs, or social media accounts of individuals dealing with diseases like tuberculosis, you'll gain a more nuanced perspective of the challenges they face, similar to how a personal encounter shifted someone's view of the disease.
  • Start a book club focused on novels and non-fiction that explore global health topics. This can foster a community of informed individuals who are aware of the complexities of diseases and the importance of access to treatment. Books like "Mountains Beyond Mountains" by Tracy Kidder about Dr. Paul Farmer's work with Partners in Health can be a starting point.
  • Encourage ethical consumerism by researching and supporting co ...

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