Everything Is Tuberculosis
This document contains spoilers
Overall themes 1
Introduction: Gregory and Stokes 2
Chapter 1: Lakka 2
Chapter 2: Cowboys and Assassins 3
Chapter 3: Look at our railroads 3
Chapter 4: That wealth never warded off 4
Chapter 5: Whipped away 4
Chapter 6: Tiger got to hunt 5
Chapter 7: The flattering malady 5
Chapter 8: The bacillus 6
Chapter 9: Not a person 6
Chapter 10: A study in tuberculin 6
Chapter 11: Trepidation and hope 7
Chapter 12: The cure 7
Chapter 13: Where the cure is not 8
Chapter 14: Marco. Polo. 8
Chapter 15: Dr. Girum 8
Chapter 16: Henry 9
Chapter 17: “Beat me later” 9
Chapter 18: Superbug 10
Chapter 19: Vicious cycles 10
Chapter 20: Hail Mary 10
Chapter 21: Like magic 11
Chapter 22: Virtuous cycles 11
Chapter 23: The cause and the cure 11
Postscript 12
Overall themes
Content warnings
Health-care injustice
Description of tuberculosis’ affect on the body
Discussion prompts
- One recurring theme is care as an act of resistance, which we see in Isatu’s defiance of stigma and Dr. Tefera’s persistence in getting Henry bedaquiline. Where have you seen care as an act of resistance in your life?
- “Sometimes, when people tell you that you’re in their prayers, it sounds like lip service. But not when Isatu says it.” What examples have you seen, within or outside the book, of “lip service” contributing to the persistence of TB?
- “Ultimately, we are the cause. We must also be the cure.” How do the closing lines of the book make you feel about the fight against TB? Hopeful? Pessimistic? Motivated?
Introduction: Gregory and Stokes March 18-23
Summary
James Watt tries to save his son. John’s great-uncle Stokes dies of TB.
Content warnings
Death of children
Discussion prompts
- John talks about his relative Stokes, who had TB. Has anybody in your family had TB? How are their stories similar or different to Stokes's story and Henry's story?
- James Watt went to great lengths to try to develop technology to save his son. How do you think personal experience with TB and distance from TB might have impacted how we think about TB today?
Chapter 1: Lakka March 18-23
Summary
John meets Henry Reider at Lakka Government Hospital.
Content warnings
Maternal mortality
Extreme hunger
Discussion prompts
- Henry's mother Isatu continued to fight for him, despite the stigma around TB. How do you imagine you would respond if your family member had TB? What can we do to support people with TB who aren't our family members?
Chapter 2: Cowboys and Assassins March 18-23
Summary
John Stetson goes west. New Mexico becomes a state. Three teenagers with tuberculosis assassinate Archduke Franz Ferdinand.
Content warnings
Attempted suicide
Gruesome imagery
Discussion prompts
- Through the nineteenth and early twentieth century, many who had TB in the US fled West in hope of a “travel cure”—if they could afford it. Even without a cure, how might increased access to resources increase the likelihood of surviving TB? What do you think might help people living with TB today in addition to medicines?
Chapter 3: Look at our railroads March 24-31
Summary
British colonialism devastates Sierra Leone. Isatu survives the civil war.
Content warnings
Colonization, racism, and related violence—historical context
Impoverishment and oppression
Discussions of civil war–related atrocities
Discussion prompts
- Chapter three opens by explaining that even though Sierra Leone is “rich” in terms of natural resources, this is not reflected in the quality and access to health care and other services for many of its citizens. What are some other ways that inequity and violence might contribute to the continued impact of TB?
- Isatu describes her childhood as happy despite growing up in a poor community. What are some ways people living with TB might be seen as “just” affected by the disease? How might a deeper, more complex understanding lead to better outcomes?
Chapter 4: That wealth never warded off March 24-31
Summary
Perceptions of tuberculosis transform from antiquity to today.
Content warnings
Gruesome imagery
Death of a child
Discussion prompts
- Tuberculosis usually does not progress to active disease. When it does, it is often taking advantage of a weakened immune system. How might this facet of TB’s attack strategy lead to it having an increased impact on impoverished communities? What other factors do you think might contribute?
Chapter 5: Whipped away March 24-31
Summary
Henry’s father takes him out of treatment. Favor dies of a tumor. Henry is diagnosed with MDR-TB.
Content Warnings
Malnutrition
Death of a child/sibling
Gruesome imagery
Discussion Prompts
- How does Favor’s battle with her tumor contrast with Hank’s cancer treatment? How did human-built systems create those differences in care?
- In Christian Europe, lepers were cast out of society while simultaneously thought to be destined for heaven. How might a similar view of illnesses today affect how we approach and treat them? What could be done to fight against those examples of stigma?
Chapter 6: Tiger got to hunt April 1-6
Summary
Europeans romanticize TB as a disease of artists. Dumas deadpans. Keats and Shiki write poetry.
Content warnings
Description of death from TB due to oxygen deprivation
Discussion prompts
- All I can think of
Is that I am lying
In a house in the snow
- What other examples do we see in the book of people with TB lying in a house in the snow?
- Write a haiku about a moment when you experienced illness or disability.
- What other diseases or disabilities do we stigmatize to assure ourselves that we won't get the disease?
- How can we combat stigmatization like this?
Chapter 7: The flattering malady April 1-6
Summary
Victorians romanticize the appearance of TB. White doctors thought only white people could have TB.
Content warnings
Discussions of feminine beauty standards, particularly around body type
Idealization of extreme weight loss
Institutional racism in beauty standards
Institutional racism in medicine and health care
Discussion prompts
- Alas! Consumption is her name
- How do you think romanticization of the female consumptive would have influenced the quality of care they received?
Chapter 8: The bacillus April 1-6
Summary
Robert Koch discovered Mycobacterium tuberculosis.
Content warnings
Bacteria descriptions
Discussion prompts
Chapter 9: Not a person April 7-13
Summary
White doctors argue that Black, Chinese, and Irish people were racially susceptible to TB. Indigenous people are forcibly displaced to sanatoriums. Stigma hurts everybody. Henry writes a poem about Isatu.
Content warnings
Discussions of racialized medicine
Medical injustice and lack of care leading to death
Racism
Death of children
Stigmatization
Mild swearing
Discussion prompts
- How do you respond to Henry’s poem about Isatu?
- Can you relate to being stigmatized for an illness? Have you ever stigmatized somebody for an illness?
Chapter 10: A study in tuberculin April 7-13
Summary
Robert Koch sells a fake cure. Arthur Conan Doyle exposes the scam.
Content warnings
Graphic description of pathogens infecting a host
Mentions of war
Mild swearing
Discussion prompts
- How does the competition between Koch and Pasteur mirror the current state of tuberculosis research? How does it differ?
Chapter 11: Trepidation and hope April 7-13
Summary
Public hygiene campaigns and sanatoria decrease TB rates while dehumanizing people with TB. Gale Perkins survives Lakeside Sanatorium.
Content warnings
Death of a child
Discussion prompts
- What do you think of Angie’s father’s decision to write Angie letters as Pauline?
Chapter 12: The cure April 14-20
Summary
Alan Hart uses X-rays to diagnose TB. Pasteurization and the BCG vaccine lower case rates. Antibiotics including the RIPE protocol provide a cure.
Content warnings
Transphobia
Medical racism
Discussion prompts
- How did you feel when you first learned that there is no TB vaccine available for adults?
Chapter 13: Where the cure is not April 14-20
Summary
DOTS imposes strict surveillance and judgment on patients and worsens outcomes.
Content warnings
Mentions of mental illness and substance abuse
Discussion prompts
- Can you relate to not being able to take your medication?
- Why do you think it can be so hard to take medication?
- What would be a better word than “noncompliance”?
- How is this word dehumanizing?
Chapter 14: Marco. Polo. April 14-20
Summary
A 50 year research gap and J&J’s patents keep bedaquiline away from Henry Reider and Shreya Tripathi.
Content warnings
Discussion prompts
- How can we do a better job of hearing “Marco” and saying “Polo”?
- And what can we do to help others hear “Marco”?
- If you could design a better system to incentivize TB research, what would it look like?
Chapter 15: Dr. Girum April 21-27
Summary
Active case finding is essential. Danaher price gouges everybody for GeneXpert tests.
Content warnings
Discussion prompts
- How do you feel about the studies measuring the economic payoff of investing in TB?
Chapter 16: Henry April 21-27
Summary
Henry’s friend Thompson dies. Henry’s health declines.
Content warnings
- Severe depression
- Isolation
Discussion prompts
- Can you relate in any way to the isolation that Henry was experiencing?
- How can we mitigate this isolation during treatment?
Chapter 17: “Beat me later” April 21-27
Summary
Henry’s father tries to take him out of treatment. Dr. Girum stands up to him.
Content warnings
Discussion prompts
- “His feet had always been in shoes already molded to someone else’s gait.”
- This line is literal, but how else does it reflect Henry’s situation in that moment?
- What do you think of Henry’s father’s response to the treatments not working?
- Have you experienced anything similar (family members not trusting the healthcare system)?
- Has there been a lack of trust in healthcare in your country? What has been its cause?
Chapter 18: Superbug April 28-May 4
Summary
Cost arguments keep effective treatment away from patients.
Content warnings
Discussion prompts
- What are other ways we can get people to care about tuberculosis?
Chapter 19: Vicious cycles April 28-May 4
Summary
Racist dehumanization keeps HIV medicine away from people in Africa.
Content warnings
Racism
Discussion prompts
- Can you think of other examples from recent years where powerful people have made racist statements about disease in low- to middle-income countries?
Chapter 20: Hail Mary April 28-May 4
Summary
Henry writes “Golden Axe.” Henry starts taking bedaquiline.
Content warnings
Discussion prompts
- What does Henry’s poem “Golden Axe” mean? How do you interpret it? What might the Golden Axe stand for?
Chapter 21: Like magic May 5-11
Summary
Henry recovers and goes home. Henry and Isatu face poverty.
Content warnings
Graphic descriptions of symptoms
Discussion prompts
- How can we fix the lack of trust in medicine that Henry’s dad had?
- If you could design a system that would prevent families from being financially devastated by illness, what would it look like?
Chapter 22: Virtuous cycles May 5-11
Summary
WHO argues that “MDR-TB is too expensive to treat in poor countries.” PIH starts treating MDR-TB in Peru. Phumeza Tisile and Nandita Venkatesan sue J&J over bedaquiline. Henry and Isatu gain the money to start a business and go to college. Henry becomes an activist and YouTuber.
Content warnings
Discussion prompts
Chapter 23: The cause and the cure May 5-11
Summary
We are the cause, and we must be the cure.
Content warnings
Mild description of a wound
Discussion prompts
- What steps can we take to choose a different world, not only for TB patients, but others too?
Postscript
Summary
John reflects on the journey he’s taken into the TB world.
Content warnings
Discussion prompts
- How can each one of us use our own megaphones, no matter how big or small, to make change and amplify the “Marco?”