This document contains spoilers
Phantom Plague takes a deep dive into the systems and collective choices that have allowed epidemics to thrive in a world that is able to cure them, but chooses not to. It is a riveting story of doctors, scientists, survivors and victims grappling with the horrors of plague and fighting tooth and nail to overcome the barriers that stand in the way of the thriving global health care system that remains within our grasp, yet eludes us.
"This book contains intense, graphic, and distressing descriptions of the following topics. Please read at your own discretion. There is nothing wrong with needing to take a moment away, or skipping this book entirely to preserve your safety. That being said, we found it to be a compelling and vivid description of the history of TB treatment, and it's failures"
Topics:
Death
Disease
Violence
Racism
Sexism
Homophobia
Poverty
Plague
Racism
What is a piece of art, science or philosophy that speaks to you that was inspired by tuberculosis? What is something that you have learned about the story of tuberculosis that is surprising?
Corpses
Blood
Anti-immigrant
Anti-semmitism
Colonialism
Sex
Plague
Buried alive
Disease as supernatural
Inequality
Mass Hysteria??
Plague
Much of western superstitions about vampires comes from historical beliefs about tuberculosis. What other beliefs and superstitions can be traced back to TB in your culture?
Violent Death
Childbirth Death
Thoughts of Suicide
Prostitution
Infanticide
Gore
Confinement
Science-Denialism
Guilt and Pride
Scientific Advancement
Doctor Semmelweis had clear, provable results, but people did not listen to him. Are there things he could have done to improve the reception of his ideas? What lessons can we learn about dealing with science denialism and poor adoption of proven public health measures?
Sexism
Racial inequality
Tobacco
Descriptions of bodily fluids (spit) and germs
Outdated racial terminology (used in appropriate historical context)
Violence
The burden of responsibility for disease transmission
Public Health
Power structures of disease control and impact
Pg. 52
Three public health efforts led to a drop in deaths
Pg 53
A variety of measures were taken to persuade men not to spit. Neither public shaming, fines, arrest, or informational campaigns made a difference. What made a difference was providing a safe and convenient alternative. Often, it is tempting to demand that the groups in power simply stop their harmful behaviors, but what other solutions may we need to try instead?
War
Colonialism
Genocide
Scientific Advancement
Doyle was often a problematic figure in medical history, but some of his ideas were important, and his writing brought knowledge of emerging medical discoveries to the public. How can we reckon with people who bring both good and bad ideas to the discussion of public health?
Graphic depictions of poverty
Racial Inequality
Residential Segregation
Casteism
Homelessness
Outdated racial terminology (used in appropriate historical context)
Dalit (as a reclaimed term)
Miscarriage
Isolation
Governance
Public Policy
Oppression and illness
Industrialization
“Many employers fire TB patients for being routinely late to or absent from work just because they are taking their medicine on time.”109 TB treatment is described as being just as hard on a person’s body as chemotherapy is for a cancer patient. What can be done to reduce the barriers that prevent people from accessing the treatment that is available to them?
“Old people move in and only come back down as dead bodies.” 114 So many aspects of the housing solutions offered to the poor in Mumbai fail to take into account the real needs of residents. They are not being met with compassion or respect. How might a more respectful and compassionate approach to housing make a difference for the public health and individual health outcomes?
Racism
Classism,
Casteism,
Quality of care vs. Quality of experience
Perception vs. Reality
Mohan’s daughter Piya received a donated course of Delamanid and called it “the greatest gift I have ever received” 117 But he was unable to get another course to finish his daughter’s treatment. Luckily, she survived. Why is Krishnann so skeptical of donated medicines? What strings are attached that may cause future problems?
The Black Death, or bubonic plague, of the fourteenth century is considered the greatest of all plagues. After the dust settled, it was responsible for fifty million deaths around the world. TB, conservatively, kills that many people every three decades” 122 Why does TB fail to get the level of attention that other diseases attract? How can we bring the level of attention to tuberculosis that other diseases receive?
“Almost 75 percent of patients buy expensive drugs in the private market rather than go to a government hospital, where the drugs are free.
“Indian patients choose expensive, faulty private sector care largely because of social snobbery. India’s government-run hospitals cater to poor patients--most of them from the lower caste and lower class. Anyone with viable options, which is to say money, almost always prefers somewhere else.
“The government hospitals are overworked, understaffed, and underfunded, and the doctors are often exhausted, brusque, and tough talking as a result. They do not advertise compassion, but they are medically sound, not having an incentive to over- or undertreat patients.”
Why does compassion matter? What aspects of care, other than sound medical practice, may influence a patient’s decision to seek or continue treatment?
Racism
Child death
Dying alone
Healthcare as a human right
Grief
Finding purpose
Shreya knew it might be too late for her, but she urged her family to go to court and fight. She wanted her suffering to have meaning. What could we do to remove the necessity of suffering from the quest for effective health care?
Krishnan argues that trust for authority and not knowing one’s rights can make them vulnerable to unjust treatment. How could trust in authority negatively impact someone’s health?
Some doctors withhold medicine because they dont trust their patients to take them and worry that the drugs will be ruined for everyone. We also know that a variety of barriers can exist that make getting to the clinic to take medicine more difficult. How do we solve both of these problems at once?
Much of the information about J&J’s Bedaquiline patent is now out of date because of advocacy within the TB community. What other difficult problems in this book may be solvable through advocacy?
Homophobic Slur “F”
Homophobic language and threats
Sex
Genitalia (condoms)
Religious Bigotry (towards LGBTQ individuals.)
Advocacy
Courage
Injustice
Perseverance
Power structures
People have a way of trying to make victims of disease into a different class of people in their mind. They try to dissociate themselves from the sick. Why is this thought process tempting to people and what can we do to help people to see themselves as more personally connected with those who are sick?
Because the AIDS victims (in the US) were mostly gay men, people in the US mostly ignored the problem or blamed the sick for their situation. It wasn’t until individuals who were more generally accepted by the community at large revealed that they were sick that people paid attention. How can we, as members of the community, use our voices to draw attention to the needs of minority communities?
ACT UP embarked on a variety of elaborate protests to draw attention to the problem of AIDS and demand change. What methods were most effective and why?
Homophobia
Racism
Civil Disobedience
Capitalism
Science Denialism
Many people argue that the free market will bring down prices and increase availability of medicine more efficiently than government interference. How has the free market failed to do these things? What moral complications exist when applying free markets to life-saving medicines.
How would a better public understanding of the price of manufacturing drugs change the outcomes for patients?
In chapter 9, we see governments deliberately choose to ignore facts about what it takes to cure HIV. What motivation might governments have to act in this way, and how can that motivation be changed?
How does misinformation prevent access to health care?
Krishnan argues that patents have the opposite of the desired effect- that they discourage innovation. How do we see this to be true in this chapter?
How can governments ensure that pharmaceutical companies continue to profit and be motivated to innovate without creating artificial scarcity or discouraging innovation?
Is there space for profit in health care? If not, how do we ensure that the work gets done at the scale that it needs to be done?
Dr. Mugyenyi made the courageous decision to refuse his government’s offer to allow Cipla’s HIV medicines through customs, citing the fact that HIV is a life-long illness and what he needed was a promise of continued access. The lawyers found loopholes to do what they already knew was right. How did his courage change the future of his country?
Segregation
Racism
Dehumanization
Bigoted, racist language
Famine
Colonialism
Capitalism
Power structures
Ethnocentrism
Racism
As independence movements spread, new countries maintained colonial-era copyright laws because they were vulnerable and had to maintain relations with the colonizers. How has that unequal relationship between countries continued? How do we see its effects today?
Advocacy
Education
Colonialism
How does who is at the negotiating table change the decisions that are made? How might the decisions about international patent law have been different if low-income countries were given more of a seat at the table? What about if doctors or patients had been involved in the discussion?
How does involving TB/HIV patients in advocacy and education change patient outcomes long term? How might it influence public health policy?
Science Denialism
Authority
The Indian government pressured Dr. Udwadia to retract his paper, though they must have known this was a bad idea. What motivates governments to engage in science denialism? How can we more effectively prevent it?
Many voices can cast confusion on public health. In this chapter, we even see voices that are generally considered trustworthy, like doctors, governments, and the WHO giving bad advice. How do we identify and elevate the most trustworthy voices?
Opportunity to promote MBM-Page 226-227
STIs
Condoms/Genitalia
Gore
Racism
Eugenics
Unethical human experimentation
Racism
Eugenics
Structural Racism
What similarities exist between the Tuskegee Syphilis experiment and the modern “clinical deserts that Krishnan describes?
What has TB learned from us and what have we failed to learn from it?