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Living in the Shadow of Death: Tuberculosis and the Social Experience of Illness in American History 

by Sheila M. Rothman
John Hopkins University Press
ISBN: 0801851866



 

Subtitles matter: in the introduction to Living in the Shadow of Death: Tuberculosis and the Social Experience of Illness in American History [emphasis mine], Sheila Rothman states that because their experiences were so different from her white, relatively well-off subjects: “I have not included the narratives of illnesses of miners, of African Americans or Native Americans even though large numbers of them suffered from the illnesses.” It’s an especially noteworthy declaration because an underlying theme of the book–which covers a period from the early 19th century to the advent of streptomycin-based treatment in the 20th–is the disconnect between voices needing to be heard and those kept silent. 

We see this in the early chapters about Deborah Fiske, who maintained two entirely separate sets of letters: The first, full of resolve and discipline, was for the public and her family. The secret second set, preserved but not meant for publication, contains her private doubts and frustrations. Similarly, discussions of duality and coded language fill the book. Consider “passing,” a word often associated with race and sexual preference, applied to hiding one’s affliction. After all, regardless of one’s ability to pay rent, discovery as a “lunger” could lead to homelessness. (The consequences for exposed “cousining,” i.e., sleeping with another sanatorium patient, were more varied.)

American also refers to the intersection of lore and history. Rothman discusses New England evangelicals who headed south not only for the curative climate but to promote slavery’s abolition and educating illiterate whites. And she would have been justified titling later sections “Go West, Young Tubercular” with its descriptions of exercise via horseback or working the orchards in the nascent Southern California citrus industry. 

As the treatment model changed from travel and outdoor exercise to sanatorium confinement, silence was often mandated. (Rothman explicitly notes how different American sanatoriums–even those catering to the rich–were from portrayals in Thomas Mann’s The Magic Mountain: thereanyone physically capable would gossip, lecture, or argue at length–at least in between cigarettes.) Patients could however express themselves in in-house newsletters with the titles such as “Spunk,” “Pep,” and “The Optimist.” One wonders how the public attitude toward TB would have changed–if at all–had such publications had modern electronic distribution. 

Living in the Shadow of Death is a 30-year-old book and that makes it more valuable to the contemporary reader: there was no COVID, no widespread use of antivirals for HIV patients, none of the recent progress (and backsliding) regarding race and gender informing Rothman’s writing. This reinforces how little–beyond the science–has changed. Consider the paternalistic attitudes involved in strict reliance on and the language of “directly observed therapy (DOT),” as Stop TB USA’s own Jonathan Stillo has written about (https://www.tandfonline.com/doi/full/10.1080/00187259.2023.2286173).

And as Rothman’s book makes clear how important science, legislation, and public will are in combatting TB, there’s an additional message: patients’ voices matter. 

- David Moskowitz, Stop TB USA Media Work Group Chair
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May 2024


GREETINGS FROM THE CHAIR
​
We are still buzzing with excitement from seeing so many of you in Baltimore (*hear emoji*)…and now for the #FollowUp work to #EndTB! The first step is to join our advocacy training May 2nd, 7pm Eastern. We will be practicing how to have a powerful meeting with decision makers. Second, the conference presentation by Dr Brenda Waning, (Chief, Global Drug Facility, Stop TB Partnership) galvanized several TB clinicians who are interested in working on getting access to pediatric formulations of TB medicines not currently available in the US. If you want to join a Work Group on that topic, let us know and we will facilitate! Third, we are also starting a Government Relations Work Group, so stay tuned (or email us at leadership@stoptbusa.org) for more details! 


- Cynthia A. Tschampl, PhD​

TB REPORTS & RESOURCES

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Find more TB resources on our website page ‘TB Resources’!​

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DC UPDATE
Thank you to everyone who supported the TB Survivors’ Hill Day on April 15 th! This was the first of two TB Hill Days, where TB survivors and other experts will be making in-person visits with their Members of Congress. 

Continue to ask your Members of Representatives and Senators to co-sponsor the End TB Now Act, H.1776/S.288!! Here’s a helpful fact sheet and a press release about the End TB Now Act.

Additional calls to action include:

  1. Please write or speak to the Chair and Ranking member of Appropriations in favor of a minimum of $225 million for CDC’s fiscal year 2025 TB programs as TB cases increased 16% in 2023 and will continue to rise as the full impact of COVID-19 comes to bear.
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  2. Please write a letter to CMS Administrator Brooks-LaSure in support of a National Coverage Determination of LTBI screening and testing.


Call the Capitol Switchboard at 1-202-224-3121 and ask for your senator/representative or give your state if you do not know their name. When you are connected to an office, ask for the Health Legislative Assistant. If you leave a voicemail message, include your name, phone number, and email so that they can respond. If you would like a sample script, email us at leadership@stoptbusa.org.

[Bonus points if you write us at leadership@stoptbusa.org and tell us how your call went!!]



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Stop TB USA
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PO Box 260288, Atlanta, GA 31126 USA

ANNOUNCEMENTS

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Opportunities:

programs.
-FDA updated its Drug Shortage Reportto include isoniazid (INH)on 05/23/23.View the report here.2023-2024 TEA Mini-Grant Program RFP and Information Session Open Now!Applications dueJune 16th, 2023.
-CDC recently published a“Dear Colleague Letter”addressing reported drug shortage challenges for U.S. TB
programs.
-FDA updated its Drug Shortage Reportto include isoniazid (INH)on 05/23/23.View the report here.2023-2024 TEA Mini-Grant Program RFP and Information Session Open Now!Applications dueJune 16th, 2023.
-CDC recently published a“Dear Colleague Letter”addressing reported drug shortage challenges for U.S. TB
programs.
-FDA updated its Drug Shortage Reportto include isoniazid (INH)on 05/23/23.View the report here.2023-2024 TEA Mini-Grant Program RFP and Information Session Open Now!Applications dueJune 16th, 2023.
-CDC recently published a“Dear Colleague Letter”addressing reported drug shortage challenges for U.S. TB
programs.
-FDA updated its Drug Shortage Reportto include isoniazid (INH)on 05/23/23.View the report here.

2023-2024 TEA Mini-Grant Program RFP and Information Session Open Now!Applications dueJune 16th, 2023.
-CDC recently published a“Dear Colleague Letter”addressing reported drug shortage challenges for U.S. TB
programs.
-FDA updated its Drug Shortage Reportto include isoniazid (INH)on 05/23/23.View the report here.2023-2024 TEA Mini-Grant Program RFP and Information Session Open Now!Applications dueJune 16th, 2023.
-CDC recently published a“Dear Colleague Letter”addressing reported drug shortage challenges for U.S. TB
programs.
-FDA updated its Drug Shortage Reportto include isoniazid (INH)on 05/23/23.View the report here.