Newsletter- October 2021

Welcome to the October 2021 chapter newsletter.

In the age of Romulus, October was the eighth month of the year. Though deposed by those sweaty usurpers July and August (themselves spurred on by the prophet January and purifier February), October kept its auspicious appellation of eighth—signifying an awakening, a time of transition, the dawn of a new day.

In October, leaves crunch underfoot like an old year shedding its skin. On our shoulders through the checker work of trees the sun flings spangles, dancing coins. The moon and the mighty Mississippi maintain their potency over effluent and refluent waters.

Let us know what you think, and remember, you can also read it on the chapter website. You can find previous newsletters on the website as well.

In this issue:

CHAPTER NEWS

FEATURES

CHAPTER NEWS

Seeking Candidates for Programming Chair

The AMWA North Central chapter is looking for a new Programming Chair. Please consider volunteering!

AMWA North Central is a volunteer-based organization. If members don’t take an active role, the chapter will cease to function, and members will lose access to programming, news, and networking opportunities. Consider taking your turn to lead (or join) a committee or serve as a chapter officer.

Please submit your interest or nominations for any of the positions to bod (at) list.amwanorthcentral (dot) org

Programming Committee Chair: The Program Committee Chair is responsible for organizing in-person and virtual AMWA events throughout the year, including identifying topics of interest and recruiting speakers. This is an important role in AMWA and is valuable for both member engagement and education.

In addition to keeping our group viable, volunteering with AMWA is a great way to network with your fellow members. It’s also a good way to fortify your C.V. with an extra line showing how you give back to your profession! If you can volunteer a few hours a month to help, contact bod (at) list.amwanorthcentral (dot) org

Register for the AMWA 2021 Medical Writing & Communication Conference

Registration is still open for the AMWA 2021 Medical Writing & Communication Conference, held virtually from October 27-29, 2021.

To register, visit the registration page https://www.amwa.org/event/2021annualconf

AMWA’s virtual platform will deliver accessible and outstanding professional development experiences for medical writers around the globe.  The conference program includes recorded education sessions, plenary sessions, as well as live roundtable discussions and live pre-conference AMWA Workshops (for an additional fee). Registrants will have access to the recorded content including education sessions through December.


FEATURES

Chapter Advisory Council Report by LeAnn Stee, North Central Chapter Representative

Mission of the Chapter Advisory Council (CAC): The CAC serves to maintain a connection between chapter leaders and the AMWA Board of Directors by advising the AMWA board on the organization’s strategic direction as it affects the chapters and acting as a sounding board about issues that have an impact on chapters and the national organization.

Third Quarterly Meeting

The AMWA CAC held its third quarterly meeting of 2021 on August 19, 2021. The meeting was held virtually with GoToMeeting software. Twelve chapters were represented.

Kim Korwek, chair, opened the meeting with a review of the mission of the CAC.

  1. AMWA 2021 Medical Writing and Communication Conference: Sharon Ruckdeschel, director of membership and systems for AMWA
    1. The 2021 conference will be held October 27 through 29, and some pre-conference workshops will be offered October 25 and 26. The virtual platform used for the 2020 conference will be used again. The theme for this year’s conference is Spotlight on Medical Communication: Disruption, Innovation, and Resilience. As of August 19, 520 people have registered for the conference. Roundtables are filling up quickly, and registration for the workshops is going well.
  2. Updates from the AMWA Board of Directors: Kim Korwel
    1. 2021 Golden Apple Award: The 2021 Golden Apple Award recipient is Aaron Berstein, PhD. The Awards Committee recognized Dr. Bernstein’s long-term commitment to leading workshops for AMWA (31 since 1988), his high evaluation scores from participants, his ability to keep a relatively dry subject interesting, and his ability to keep his material timely and relevant by continually updating the content.
    2. AMWA Journal: The summer issue (Vol 36, No.2) has been published. It was the first issue developed under the leadership of Michael G. Baker, PhD, the new editor-in-chief. The journal welcomes submissions on various topics related to medical communication. Please review the Instructions for Contributors at www.amwa.org/contribute or contact journaleditor@amwa.org to discuss ideas. Initial steps are being taken to transition the journal from a print publication (PDF) to a digital publishing platform.
    3. Diversity and Inclusion Needs Assessment: The AMWA Board of Directors is discussing the diversity and inclusion needs of the organization. The Board is focusing on the following areas: 1) representation among board members, 2) diversity in opinions, experiences, and backgrounds to inform decisions, and 3) possible need for a working group to assess needs and provide recommendations. Discussion of this topic is ongoing. Members are encouraged to bring ideas, issues, and concerns to the Board. Feedback is welcome.
  3. Fall Chapter Compliance Update: Sharon Ruckdeschel
    1. Every fall, each chapter provides an activity report, a financial report, and any supporting documents to AMWA. AMWA uses these reports to create a Chapter Trends Report that is distributed to CAC representatives. AMWA also uses these reports to conduct a chapter compliance review to ensure that chapters are meeting the AMWA Chapter License Affiliation Agreement. The review is under way, and each chapter will be contacted when it is complete. Chapter leaders are encouraged to review their bylaws and to have new leaders review them to understand chapter structure and state regulations.
  4. Discussion Item: Chapter Officer Recruitment and Qualifications
    1. The CAC representatives had a lengthy discussion about what strategies chapters use for recruiting officers, how to assess qualifications of potential officers, and processes and best practices for vetting potential officers. Chapter members are encouraged to review the “Roadmap to AMWA Chapter Success” and other chapter tools on the AMWA website.
  5. Future CAC Teleconferences
    1. The date for the next meeting is to be decided.

Summary of September 16th Virtual Happy Hour by Adam Fix

On September 16th at 6 PM, five of us met via Zoom for a virtual happy hour and game night. We played online trivia as well as a game Natalie recommended called Codewords. Basically, the group divides into a red and blue team, each of which chooses a, umm, cluemaster? Codemaster? Secret keeper? I forget what it was called. Anyway, a board is displayed with 20 or so words in little color-coded boxes. However, only the cluemaster can see the colors. It’s their job to give one-word hints as to which words they need to pick. For example, if the word “Fundamental” is in a red box, the red cluemaster will give a clue like “Basic” or “Essential” and the teammates will try to guess the correct word on the board. But watch out! If your teammates pick a word of the wrong color, the other team gets points. So, in the game of Codewords, restraint is key. Skipping your turn is often better than accidentally picking the other team’s word. All in all, Codewords is a delightful game well-suited to a virtual happy hour environment. Fun times were had by all.

Book Club Notes: Bad Blood: The Tuskegee Syphilis Experiment

By Paul W. Mamula, PhD

Our virtual book club on September 27, 2021, featured Bad Blood: The Tuskegee Syphilis Experiment by James H. Jones. Bad Blood received the Arthur J. Viseltear Award from the American Public Health Association for important contributions to the history of public health and was also selected by the New York Times Book Review as one of the 12 “Best Books” of 1981. Bad Blood also inspired a play, a PBS Nova special, and a motion picture. Dr. Jones is now a distinguished Alumni Professor of History at the University of Arkansas.

The Book and 1993 Reissue

Bad Blood is a compact 242 pages and presents a meticulous account of the infamous Tuskegee Syphilis “study” from its origins through the firestorm arising from its disclosure. The Tuskegee study became the landmark case that shaped our current biomedical regulatory framework. The book includes interviews from participants and study staff while striking a balance between being informative without being dense. The book has 16 pages of photographs, including those of principal investigators, several of the participants, and others that illustrate rural Southern poverty. Bad Blood was reissued in 1993 with an additional chapter that addressed the AIDS epidemic and minority communities’ hesitancy for treatment that can be partly attributed to the study.

The Tuskegee Syphilis study began as an outgrowth of a local disease survey, and in 1932 physicians wanted to “study” the disease’s long-term effects among Blacks, stating, “We may never have this opportunity again.” The Tuskegee Institute became the host institution partly to mitigate local physicians’ perceptions of the US Public Health Service meddling in their affairs. The study, however, had no ethical, medical, or scientific merit. The long-term effects of syphilis had been known for decades—a Norwegian study in 1929 revealed the deleterious effects of untreated disease—and the disease manifests no racial differences in symptoms, complications, or progression, contrary to the prevailing racist Southern mindset. One of the researchers cited Joseph Earl Moore, MD, who said, “Syphilis in the negro is in many respects almost a different disease from syphilis in the white” (2nd edition, p. 100). Furthermore, the study did not test any new drugs or test the efficacy of older therapies among the original study population—399 men with syphilis and 201 who were syphilis-free

The study has been compared to the Nazi experiments of the Holocaust because the men were not informed that they had syphilis and were not treated. Some were initially given an incomplete (noncurative) course of neoarsphenamine and mercury, the then-current treatment, but most were not treated at all. Participants had routine blood sampling and spinal taps but received only observational care throughout the study. The nontreatment is scandalous, particularly because effective therapies such as penicillin became available in the 1940s! Consequently, many participants experienced serious complications or died prematurely.

Incredibly, physicians continued to justify the study until 1972, when Jean Heller’s expose in the Washington Star was published on July 25th of that year. Heller had spoken with Peter Buxtun, a disease contract tracer whose previous complaints about the study had gone unheeded. Her story provoked a Congressional investigation; the book describes the eventual outcomes of the disclosure. The scandal led to the National Research Act in 1974 and the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in 1979.1 The surviving men and some relatives were eventually compensated, just before a class action suit went to trial in 1974.2 President Clinton offered a formal Presidential apology in 1997.3

Medicine, Race Relations, and Relevance

The book does an excellent job of providing the social context and of describing the workings of study personnel, their social attitudes, and the continued justification that kept the study going for so long. Comments by Black nurse Eunice Rivers, who shepherded the men through the study, were particularly interesting. The point person for follow-up appointments for blood draws and physical exams, Rivers came to know many participants and their families. She also reflected on the state of race and professional relations, stating later that she always did as her training dictated. She said, “as a nurse being trained when I was being trained we were taught that we never diagnosed; we never prescribed; we followed the doctor’s instructions!” (2nd ed, p. 163).

Black nurses had difficulty securing employment even in good times then, and the study provided Rivers with steady work, while allowing her to do what she could for the men without contradicting the physicians. While participants did see physicians and other medical personnel, the lack of treatment was shockingly callous. One physician remarked, “These men go from cradle to grave without seeing a physician.”

Mary Knatterud noted that “for a 1981 book, Bad Blood felt current, not least because Sears magnate Julius Rosenwald—recruited by Booker T. Washington to help fund the syphilis study and alluded to many times (pp. 52, 55, 80-81, 86, 90)—was also just mentioned in the September 20, 2021, New Yorker (p. 20) in connection with his work funding schools for Black children starting in 1912.” Moreover, Knatterud added, “Another book club I belong to just finished discussing Invisible Man by Ralph Ellison, who was a music major at Tuskegee Institute from 1933 to 1936, just after the decades-long syphilis study began.”

Editorial Quibbles and Additional Impressions

Knatterud said, “I was dismayed at the numerous typos and misspellings in Bad Blood, everything from dysentary (p. 18) to hoodworm (p. 44) to divise (p. 218).” She emphasized that she “learned a lot from Jones’s journalistic even-handedness, especially the fact that the classism of male doctors, Black as well as white, was key to the perpetuation of the study.” Knatterud pointed out this illustrative exchange (p. 80):

Another patient sharply criticized the bedside manner, not to say competence, of the ‘government doctor’ who treated him. ‘He lay our arm down like he guttin’ a hog,’ the man complained. ‘I told him he hurt me….He told me ‘I’m the doctor.’ I told him all right but this my arm.’

In the News Again

Bad Blood makes an incredible read now; however, some of its issues recur and have resurfaced in other articles. The relationship between physicians and their patients, the state of race relations, and professional attitudes toward therapies have also resurfaced with the COVID-19 pandemic. When I read the book, I found articles addressing conduct of medical studies,1 treatment of study participants,1,4 and health effects5 related to the Tuskegee study. In a recent interview in an article that puts the study in the context of recent controversies,4 Peter Buxtun, the whistleblower, addressed the evolving role of whistleblowers and what eventually prompts complaints. The Tuskegee study has also been cited as a cause of the hesitancy to seek care and of the distrust in medical personnel–factors that helped produce persistent health disparities between Blacks and whites.4,5 This distrust has provoked a reexamination of how patients and study participants are treated.4 While readers can consult the CDC website2,3 for its take on the study, this book presents a concise telling of a sordid chapter in US research history. It is a very worthwhile read.

Our Next Book

Our next book club gathering (over Zoom) will be on January 24, 2022. We will discuss The End of October by Lawrence Wright. The book was published in March 2020 and is a prescient fictional story of a worldwide respiratory pandemic. Wright interviewed the makers of the current mRNA vaccines for a story in The New Yorker, so the book has an eerily nonfiction tone. Please join us for a lively discussion.

References

  1. Resnik DB. Treat Human Subjects with More Humanity. American Scientist 2021 Jul-Aug;109(4):232-237
  2. Centers for Disease Control and Prevention. The U.S. Public Health Service Syphilis Study at Tuskegee.  Tuskegee Study and Health Benefit Program – CDC – NCHHSTP
  3. Centers for Disease Control and Prevention. The U.S. Public Health Service Syphilis Study at Tuskegee. The Tuskegee Timeline. Tuskegee Study – Timeline – CDC – NCHHSTP [Accessed Oct 1, 2021]
  4. Edwards MA, Yang C, Roy S. Who Dares to Speak Up? American Scientist 2021 Jul-Aug;109(4):238-242
  5. Newkirk VR 2nd. A Generation of Bad Blood. The Atlantic June 16, 2016