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Library of Congress Cataloging-in-Publication Data
Names: Kaufman, Sean G., author.
Title: Prepare and protect : safer behaviors in laboratories and clinical containment settings / Sean G. Kaufman, Safer Behaviors, Woodstock, Georgia.
Description: Washington, DC : ASM Press ; Hoboken, NJ : Wiley, [2020] | Series: ASM books | Includes index.
Identifiers: LCCN 2019051486 (print) | LCCN 2019051487 (ebook) | ISBN 9781683670148 (hardback) | ISBN 9781683670179 (adobe pdf)
Subjects: LCSH: Biological laboratories–United States–Safety measures. | Medical laboratories–United States–Safety measures. | Laboratory infections–United States–Prevention.
Classification: LCC QH323.2 .K38 2020 (print) | LCC QH323.2 (ebook) | DDC 570.72–dc23
LC record available at https://lccn.loc.gov/2019051486
LC ebook record available at https://lccn.loc.gov/2019051487
Cover images: (front) Colorized scanning electron micrograph of filamentous Ebola virus particles (blue) budding from a chronically infected VERO E6 cell (yelllow-green). Image captured and color-enhanced at the NIAID Integrated Research Facility in Ft. Detrick, Maryland. Credit: NIAID. (back) Courtesy Bethany Bandera https://www.bethanybandera.com/
Cover design by Susan Brown Schmidler
This book is dedicated to those serving on the front lines
of infectious disease—the infectious disease pioneers. May you remain
safe as you serve others with your courage and determination in
fighting against infectious diseases.
Sometimes you meet the right person at exactly the right time. Maybe you didn’t even know in that moment how significant their impact might be; maybe you didn’t realize how much you needed what they had to teach you. In late July of 2014, I met Sean Kaufman.
Since 2002, our facility has had a team of nurses, laboratorians, and physicians who are available to staff an inpatient hospital room in case a CDC worker were to be inadvertently exposed, either in the lab or in the field, to an infectious agent. We anticipated caring for, if necessary, an essentially well person while we observed them for the signs and symptoms of whatever contagious thing they might have been exposed to. We followed globally when there was an outbreak that would make the news: Marburg virus or dengue fever or Crimean-Congo hemorrhagic fever, or any other exotic-sounding, scary disease, whenever there was a possibility that a CDC worker might get a needlestick or be scratched by a bat or monkey or break a vial of blood. Our team waited, quietly and patiently, for these occasions that did not come. The CDC has an amazing safety record! We collected our on-call pay ($3.50/hour), for weeks and months and years on end, with barely a whiff of trouble.
And then, in 2014, we got the call. We knew an Ebola outbreak was raging along the western edge of Africa. We had read about the World Health Organization (WHO), Doctors Without Borders (MSF), and other relief organizations struggling to contain the outbreak and care for patients in makeshift hospitals across three countries. But our call was not from the CDC, it was from the State Department. Would we be willing to care for an American doctor from Liberia ill with Ebola virus disease? Were we ready? Could we be ready in a few short days?
And that’s when I met Sean Kaufman. He jumped into a unit he did not know, into a team of people from across our health care system whom he did not know, to help review a strategy for safety to care for one of the world’s deadliest diseases. And like a firefighter who enters a smoke-filled room to lead you to safety with a flashlight and a steady, guiding hand, Sean came in and helped us make sure that we could be safe doing a job we had been trained for, but had never had to put into practice.
Because it is not practice alone that makes perfect. It is a watchful eye, it is a demonstration of competency, it’s believing in each other as teammates, as family, and in a commitment to the safety of each person on that team, in that family. From Sean we were reminded of the importance of donning and doffing our personal protective equipment in a precise manner. He helped reinforce that our own behavior in that PPE, our attention to detail, our willingness to be accountable and hold others accountable, was what could keep us safe. And only by being safe ourselves could we keep our facility and our community, our friends and family, safe as well.
If you ever need to be led to safety, I hope you meet Sean Kaufman. I am grateful I did. I am grateful for the lessons that still resonate in my approach to patient care. Sean helped to instill in our team both the confidence to care for these precious patients and the weighty responsibility that comes with being on a team where there can be no mistakes, no weak links in the chain. He instilled in me a deeply and still held conviction that I cannot do this alone. That my safety is in the hands of my coworkers, and theirs in mine. To trust them, to believe in the processes and protocols, the practice and the perseverance of each member of this family.
Sometimes, you just meet the right person at the right time. Thank you, my friend.
Florence Nightingale said, “The first requirement of a hospital is that it should do the sick no harm.” This statement served as the backbone of infection control for health care settings. I don’t believe any scientist (of the right mind) has ever come to work with the goal of killing themselves or those with whom they work. Historically, there are several examples of scientists doing things to protect themselves when working in biological laboratories. However, it is my opinion the profession of biosafety formally started within the United States in 1941 when Secretary of War Henry Stimson stated, “Because of the dangers that might confront this country from potential enemies employing what may be broadly described as biological warfare, it seems advisable that investigations be initiated to survey the present situation and the future possibilities.” In 1942, George Merck established the War Reserve Services under the stated premise, “There is but one logical course to pursue, namely, to study the possibilities of such warfare from every angle, make every preparation for reducing its effectiveness, and thereby reduce the likelihood of its use.”
As I have traveled the world, I have witnessed vast differences between biosafety levels from country to country. Those countries that at one time or another had offensive and defensive biological weapons research programs are much further along in biosafety than those that did not have such programs. Principles, practices, and strategies aimed at keeping scientists alive while developing biological weapons were developed, to protect the scientists and proprietary information gained during these scientific experiments.
Like many others, I stand on the shoulders of giants. This is because many of my mentors were ones who took lessons learned in the age of biological weapons and generalized them to the world. The publication of the first edition of the Biosafety in Microbiological and Biomedical Laboratories (BMBL) in 1984 was foundational for formalizing the practice of biosafety and generalizing it to the outside world. The 6th edition of the BMBL will be published soon.
As a behaviorist, I often run into something called the Semmelweis Reflex, a metaphor for the reflex-like tendency to reject new evidence or new knowledge because it contradicts established norms, beliefs, or paradigms. Dr. Ignaz Semmelweis made a remarkable observation about the impact of a doctor’s contaminated hands infecting women during childbirth. His hand-washing proposal was contrary to the beliefs and practices at the time. Dr. Semmelweis’s ideas were rejected and ridiculed. He died alone in a mental institution, only to be acknowledged many years later for a discovery we still teach today—wash your hands with soap and water! Please consider reading this book with an open mind, as much of it may be contrary to what exists today.
Working with infectious diseases in clinical and laboratory environments has inherent risks. The World Health Organization defines inherent risk as risk associated with laboratory activities or procedures that are conducted in the absence of mitigation measures or controls. I believe both the professions of biosafety and infection control have done an outstanding job controlling inherent risks with engineering, personal protective equipment, and standard operating procedures. However, there is a risk that remains after these carefully measured controls are put into place—defined as residual risk.
I believe it is within residual risk that human risk factors exist. These inter- and intrapersonal skills—how a person interacts with the infectious disease, others they work with, and themselves—pose a risk which is not traditionally covered in health care or laboratory settings today. Further, there is the concept of “culture,” which is the blend of the people, the agent, and the environment. We are just beginning to understand the challenges in developing and sustaining a culture of safety within an organization.
Although it is true that I have never officially served as a biosafety officer, I offer this book with the hope of promoting biosafety and addressing serious challenges. Today, biosafety professionals serve organizations, minimizing risks associated with handling biological agents in laboratory settings. I believe my role in biosafety is a unique one and very different from the activities of a biosafety professional.
While biosafety professionals work in the trenches (and trust me—this is very important work), I am using my gifts to inject excitement into safety, primarily around infectious diseases. I teach safer behaviors, and though I may not be able to provide a comprehensive essay on microbiology, I can discuss safer behavioral practices and explain human risk factors that are absolutely critical in the application of biosafety.
I have spent the last 15 years of my life in biosafety: motivating, inspiring, changing, and increasing awareness in biosafety. I am a promoter of biosafety, and since the 2014 Ebola outbreak, I am also a promoter of a term I coined, clinical containment. This book can be used to teach components of biosafety as well as to introduce the concept of biosafety to the health care industry. Health care staff must learn new ways of practicing infection control because what they are doing still has weaknesses. More illnesses can be prevented by combining the professions of biosafety and infection control with simple containment strategies.
Safety is not boring, because it centers on human behavior. In terms of safety, understanding human behavior is as important as understanding microbiology. It is my hope that this book will find its way into the hands of scientists, nurses, doctors, and health care and biosafety professionals. I hope this book increases your awareness and understanding of how behavior serves as the bridge between safety plans and safer outcomes.
I must acknowledge how thankful I am for the blessings I have received in this life. It started with being born to a mother and father who sacrificed a great deal to provide a life with so many memories. A brother who has always been there. Three beautiful children, and my wife Jacqueline, who has been my rock. I give all credit and praise to God—always have and always will.
I was born in San Diego, California. My father, a United States Marine Corps Officer (retired), is nothing more than a big teddy bear. My mother, short in stature, embodies a pit bull-like personality. She is extremely loving and capable of doing anything; as a family we learned to never get in her way. I also have a younger brother who was my best friend growing up. My father once said to me, “Son, for every action there is a reaction. If you don’t like the reaction, change your action until you get the reaction you want. Then, go forward, as you have life figured out.”
I was never the best student. Focused on my strength in sports, I was able to get into a school both my grandmother and father had attended— San Diego State University. When I first entered the University, I believed I wanted to be an elementary school teacher. I coasted through my first semester and then joined a fraternity. From that point on, school was never about academia, it was about where the next party was.
I will never forget the day I opened the mailbox and received the letter letting me know that I had been academically disqualified as an incoming junior. I truly did not know what to do. My parents were going to kill me. So, dressed in an old suit jacket, I drove myself across campus to the office of the director responsible for dismissing me from school. Once there, I ran right past the secretary and directly to Dr. Cathie Atkins, whom I refer to as one of the first angels of my life. I said to Dr. Atkins, “I just got this letter, and I need a second chance. Please!” After waiving her secretary Gloria off, Dr. Atkins looked at me and said, “What makes you think you deserve a second chance?” I looked at her and said, “I messed up. Lost my way. Please, I need your help.”
She requested that I work with her all summer and told me that my second chance would be considered as I did so. I said that I had a job and other obligations. She demanded I resign from the job and the fraternity, which I did immediately. By the end of the summer, she called me into her office and changed my career path forever. “Sean, I notice you are not doing well in most of your classes, but you have straight As in all of your public health courses. I have enrolled you in a semester of public health courses, and we will see what you make of this second chance.”
I never looked back, getting straight As and an occasional B for the rest of my undergraduate career. I brought Dr. Atkins flowers at the end of every subsequent semester, along with my report card, to say thank you for the second chance.
The last summer of my undergraduate career, I was summoned to her office. On hearing that I didn’t know what my plans were after graduation, she asked if I had considered going to graduate school for public health. I responded with hesitation because of my past academic performance. She smiled and told me that the last 60 credits are the only ones considered. She suggested I take the GRE and work for Dr. Mel Hovell, who would eventually become the chair of my thesis committee.
I could go on about everything Dr. Atkins did for me but I think the greatest gift was one she gave to my father. She had nominated me for the growth and achievement award, which meant that I got to sit on stage with her during the graduation ceremony. My family was in attendance and began looking around for me among the throngs of students in the graduate seating area, but they could not find me. Dr. Atkins then stepped up to the microphone and said, “I remember the day I first met Sean Kaufman. He rushed into my office, past my secretary, and said he needed a second chance. I asked him why I should give him one and was surprised by his answer. Most of the time students blame teachers or something else but Sean didn’t. He blamed himself; at that very moment I knew he deserved a second chance.” From my seat on the stage, I saw my father cry, which in turn made me cry. I will never forget that day and will never be able to thank Dr. Atkins enough for everything she did. She is the reason I entered the School of Public Health and earned my MPH, and is part of why I am where I am today and writing this book.
There are many more qualified individuals than myself who are hard at work, right on the frontlines of this topic, and yet here I am sitting behind the computer with an opportunity to share the knowledge I have gained during my years working in this field.
I first fell in love with the field of infectious diseases through HIV. It is hard to even describe the stigma surrounding HIV, and very few people could understand my fascination with this virus; my parents thought I was either gay or sick with the disease. The fact that a virus could enter your body, recreate your RNA to include itself in your DNA, reproduce without your body knowing, and destroy your immune system blew my mind. What magnified my fascination was the hysteria surrounding HIV at the time; the virus was not yet well understood and, having no cure, was considered a death sentence.
My professional public health career started with HIV testing. I facilitated pretest sessions with patients, explaining what the test was and what the results meant and answering any questions. I would order the test, and the patient would make an appointment with me to get their results. It was a privilege to work with these patients, and also a great responsibility because when a result came back positive, the tone with which I delivered the news could have a powerful effect on the patient.
During this period of my career, I spent time with those who had lost loved ones, were losing loved ones, and would one day lose themselves to this virus. Even now, the memory of all those who gave their time and used their lives to raise awareness and change behaviors, with the hopes of preventing future HIV-related deaths, fills me with emotion.
The only reason I can think of that someone working in public health would ever move from San Diego, California, to Atlanta, Georgia, is to work at the Centers for Disease Control and Prevention (CDC). Following my move, I remember being in awe; some nights I could not even sleep because of how excited I was to be working at this pinnacle of public health. Things started slow there. The first protease inhibitors (medication) were approved in 1995, making HIV in the United States more of a chronic condition rather than an acute one. Furthermore, with a drug that controlled viral loads of HIV, the need for behaviorists decreased. I quickly transitioned to waterborne disease, where I worked with Dr. Michael Beach.
Dr. Beach is one of the most enthusiastic men I know. He loves parasites! During my stint in the Division of Parasitic Diseases, we developed the Healthy Swimming project. What fascinated me most during my time in this position was the behaviors I witnessed. If I were to have you and 20 people bathe together in a tub and then ask you to take the water that you bathed in and swish it around in your mouth, would you do it? Yet millions of people will jump into a swimming pool or lake and do exactly that! They swish with water that has touched perianal surfaces, that contains various bodily fluids and excretions, among numerous other things that could cause very serious illnesses.
It was a fun job, but things changed significantly following September 11, 2001. When the September 11th terrorist attacks occurred, I requested and was granted an opportunity to work within the emergency communications center. It was not long before I was deployed to Trenton, New Jersey, to work with postal employees who were exposed to Bacillus anthracis spores, the causative agent of anthrax, during what is now referred to as the 2001 anthrax attacks (or Amerithrax). I saw firsthand with both HIV and anthrax that behaviors around infectious disease outbreaks tended to be very similar, regardless of differences in the agents themselves. I met Suzanne Miro and worked with Jonathan King (who was a fellow at that time and is now a PhD working at the World Health Organization) and Paul Abamonte, and together we had a chance to meet Norma Wallace and her son, a survivor of inhalational anthrax who was featured in People magazine. When I returned to CDC, my career had changed.
Subsequently, I responded to outbreaks of West Nile Virus in Louisiana and severe acute respiratory syndrome (SARS) within the quarantine station at Los Angeles International Airport. I also trained with the Federal Emergency Management Agency at Mount Weather and in Anniston, Alabama. It was there that I met David Miller and Harvey Holmes, who would introduce me to David Bressler and Besty Weirich. Bressler and Weirich gave me my first introduction to biological laboratories and an understanding of what role these play during a bioterrorism event.
The next major influence on my life was a meeting that my colleague and friend Ellen Whitney set up with Dr. Ruth Berkelman. Ruth is an amazing woman; without her support, I would not be where I am today. After talking with Ruth for only a short time she said, “It is not a matter of if, it is a matter of when you will come work with me.” I turned in my resignation notice at CDC and started working at Emory University in January of 2004.
Very soon after I started at Emory, Ruth entered my office and told me they had just received money to build a mock biosafety level 4 laboratory (BSL4). I thought it was great they had received their funding, but I wondered why they were building a mock lab and, more so, why she was talking to me about it. She kindly reminded me that I had a background in behavior and infectious diseases. She explained that the need for high-containment laboratory biodefense research was on the rise, but there was no capable workforce in place. We could use this mock lab to prepare and train exactly such a workforce.
During this project I met and worked with Lee Alderman, Henry Mathews, Rich Henkel, David Bressler, Betsy Weirich, and Peter Jahrling, all of whom had profound impacts on my biosafety career development. I jumped right in and started training groups in this mock BSL4. As we did more and more trainings, the need for and reputation of our program grew. This was also in no small part due to Ruth Berkelman’s support. She never wavered in her commitment to the project!
The Emory University Science and Safety Training Program, as it would come to be called, took me around the world, delivering biosafety training programs on almost every continent and working with thousands of individuals. After 10 years, the training center grant had run out and the building that housed our laboratory was supposedly to be demolished (though it still stands today). At the time, Patty Olinger was the Director of Environmental Health Services at Emory. Patty offered me a part-time job working at the university, allowing me to retain my health insurance and continue serving as the CEO and Founding Partner of Safer Behaviors.
On July 31, 2014, I visited the Emory University isolation unit to determine whether they were ready to treat an Ebola-infected patient. I will write about this later in the book (see chapter 13), but suffice it to say that while the staff at Emory Healthcare had the heart and courage required, the unit was far from prepared. I sent an email to Dr. David Stephens discussing my concerns. He was receptive and—as Patty secured resources for Emory Healthcare while I set up the isolation unit—secured gear from the closed training center and trained the health care providers. After the training was complete, I was truly honored to be asked to stay with the unit while they treated Kent Brantly and Nancy Writebol, the first two Ebola patients ever treated in the United States.
When the Ebola virus was no longer detected in the blood of Kent and Nancy, I resigned from Emory University. Later, as I was consulting in Belgium and learning from Médecins Sans Frontières, I watched on television the nurses and doctors I had worked with say goodbye to Kent Brantly. It brought tears to my eyes and remains a highpoint of my life.
I continue to consult and provide biosafety training to many around the world. In fact, I have opened a small training center of my own based on the training center at Emory. Here, I will continue to train small groups of professionals for as long as I can.
One of the lessons my mentors Lee Alderman and Henry Mathews taught me serves as the backbone of all I do, not only in biosafety but in everything I do professionally. We serve, with you and by you, increasing your ability to practice safer behaviors for yourself, increasing your capacity rather than a dependency—today and in the years to come. Let’s do safety together. I am here to serve, and if you want to discuss anything in this book, please call me directly at 404.849.3966.
Pi.o.neer (noun)
One that begins or helps develop something new and prepares a way for others to follow: one of the first to settle in a territory : an early settler
—Merriam-Webster Unabridged
(http://unabridged.merriam-webster.com)
In this book, you will meet Beth Griffin, a young woman working with non-human primates at Yerkes National Primate Research Center in Atlanta, Georgia; Linda Reese, described as the “lab mom,” verifying a dangerous sample at the Michigan Department of Health Laboratory; and Maybelline (last name unknown), a maternal delivery nurse in Liberia during the 2014 Ebola outbreak, praying as she struggles to live. These women were infectious disease pioneers who died doing their jobs.
You will also learn about Henry Mathews, a scientist at the Centers for Disease Control and Prevention (CDC), who became sick with hepatitis B while working on samples from Africa during the early days of the HIV crisis; Joshua Gurtler, a United States Department of Agriculture (USDA) scientist, who became sick with Escherichia coli O157:H7 while working to make food safer for the public; and Nina Pham, a Texas nurse treating an Ebola patient, who also became sick with Ebola. These individuals, now living with conditions that impact the rest of their lives, are infectious disease pioneers, too.
If you work in a clinical laboratory, research laboratory, ambulance, emergency room, intensive care unit, or isolation room, then you, too, are among the ranks of the infectious disease pioneers. You are on the frontline of emerging and reemerging infections, working directly with infectious pathogens and infected patients for the common good.
The pathogens are invisible. There are newly emerging and re-emerging pathogens that are changing and mutating constantly. Although we understand a great deal about pathogens and pathogenesis, there is even more that we do not know. Infectious disease pioneers are not only some of the first to encounter an unknown pathogen, they (you) may also have the earliest exposures and be among the first patients.
I think that this kind of work is heroic. Many don’t think of laboratory workers when the word “hero” is mentioned. Typically, that word conjures images of firefighters running toward flames to save lives, police officers providing security of mind and body, and members of the military standing guard. The value and heroism of these individuals are correctly recognized by society for the way in which they put their lives on the line for others. But what happens when these heroes get sick?
Imagine this scenario: One of these heroes wakes up at 2:00 a.m. with a high fever. She is greeted at the emergency room by a nurse who screens her, asks her questions, and guides her to a room. A doctor then visits her and orders blood to be drawn for testing. A clinical microbiologist, either in the hospital or at a nearby lab, receives the sample (along with thousands of other patient samples) to perform the ordered tests, and guides the nurses and doctors in their patient care. More than 24 hours later, everyone involved with the patient learns that she is infected with the severe acute respiratory syndrome virus (SARS). All these nurses, doctors, and laboratorians have unknowingly encountered a very dangerous pathogen just by doing their jobs. They are infectious disease pioneers.
There are more heroes connected to this ecosystem. How do the clinical laboratorians know what tests to perform, how to interpret them, and what recommendations should be made to the health care staff? Identifying solutions to infectious diseases is the important role of research scientists working in research laboratories. They spend hours designing, performing, repeating, and analyzing experiments and encountering risks for the common good. Whether researching the elements of specific pathogens that threaten human, animal, and plant health, studying existing preventive measures and treatment protocols, or searching for new vaccines and medications, a research scientist is also an infectious disease pioneer.
Public health laboratory staff are infectious disease pioneers as well. As soon as health care workers and epidemiologists become aware of an outbreak, public health laboratory staff work to identify the culprit. Public health laboratories identify and distinguish community threats, determine whether they are natural or a form of bioterrorism, and monitor for emerging as well as existing public health threats. Public health laboratory staff are responsible for detecting and alerting other agencies and the public when something is wrong and when increased attention and assistance are needed.
I wrote this book to serve primarily those working in clinical, research, and public health laboratories, because these are the people I train globally. However, as I will discuss later, my time at Emory University Healthcare’s Ebola isolation unit gave me a unique perspective. I saw firsthand how beneficial the application of the biosafety principles and practices used in clinical and research labs could be for the treatment of sick patients by clinical care providers. With more than 1 million health care-associated illnesses and more than 100,000 deaths from these in the United States annually (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6245375/), it is clear why clinical care providers must add another component to their infection control practices.
Infectious disease pioneers from all of these arenas work together to improve and protect the lives of people around the world. Each contribution, whether in the clinic or in the clinical, research, or public health laboratory, is needed to complete the puzzle of global health. You may not find yourself on the front page of the newspapers (unless you make a mistake), but you certainly deserve to be there!
This book provides guidance for the everyday laboratorian as well as suggestions and guidelines for those in leadership and administrative roles. Most chapters feature a personal story from an infectious disease pioneer or someone close to them. Some stories are explorations or reflections of various career paths that infectious disease workers have taken, whereas others serve as cautionary tales that highlight the very serious risks these pioneers may face. In addition to providing education on safety considerations for those on the frontlines of the infectious disease battle, the book introduces some of the infectious disease pioneers I have had the privilege to know and work with over the years.
The Loss of Beth Griffin by Caryl Griffin
In 1997, Beth Griffin was an artistic, intelligent, and compassionate young woman who worked as a research assistant at the Yerkes Primate Research Center studying hormonal influences on macaque behavior. Her exposure occurred while working within an outdoor compound containing 100 rhesus macaques. Beth was performing physicals on each of the monkeys during an annual roundup. During this process, the monkeys were brought out six at a time in a transport cage and then transferred one at a time to a squeeze cage where they were anesthetized to be examined safely.
The last monkey to be examined that day was frightened and refused to enter the squeeze cage. As Beth leaned toward the cage, attempting to coax the frightened monkey, the monkey jumped and flicked material with his tail from the bottom of the cage into Beth’s unprotected eye. It was not common practice at the time to wear goggles.
She removed brown material from her eye with a damp paper towel, and when she asked about washing her eye (she had not yet been trained in eye-wash station use, and this was also not common practice at the time), she was instructed to continue the examination of the monkey because “We all get splashes in the eye.” Forty-five minutes later, she rinsed her eye under the faucet in the ladies room with the help of the housekeeper. She was told that no incident report was necessary.
From the time of exposure, Beth was worried about the possibility of contracting the herpes B virus, which is endemic in macaques. Ten days later, on a Saturday, matter began oozing out of her exposed eye. Over the next six days, Beth made persistent, repeated attempts to get help. She first went to her internist, who referred Beth to the emergency room. There, she was diagnosed with pinkeye (conjunctivitis) and told that there was no need for testing for the herpes B virus.
On Monday, the Primate Center’s occupational health nurse required Beth to complete an incident report that stated, “No follow-up necessary.” That day, Beth called the hospital’s infectious disease department directly, asking for evaluation, but was told, “A physician must make the referral.” She again called her internist, who referred her to ophthalmology instead of infectious disease. The ophthalmologist diagnosed cat scratch fever and treated her with doxycycline, without testing for herpes B virus.
The next day her symptoms worsened, with a pounding headache, and for the fourth time she called her internist, who referred her to the doctor on call, who referred her to the ophthalmologist the next day. Overnight, she developed photosensitivity, a shooting, pounding headache, and nausea and vomiting.
On her follow-up visit, the ophthalmologist called the infectious disease physician, who immediately admitted Beth to the hospital, where herpes B virus testing was performed and treatment with intravenous acyclovir was begun. Three days later, a central line was inserted, and she was placed on ganciclovir as well as total parenteral nutrition.
Two weeks later, her symptoms improved, and she was discharged with a central line. But overnight, her neck pain, which had begun two days before discharge, increased, and by morning she was unable to move her legs. She was rushed to the emergency room and admitted to the intensive care unit with ascending disseminated myelitis. By early evening, she was intubated, and by morning she was paralyzed to the level of her C2 vertebra. It was thought by her physicians that the herpes B virus infection was resolved. She was treated for postviral autoimmune disease, was given massive doses of intravenous steroids, and received five days of plasmapheresis. On full life support, she died two weeks later.
Since Beth’s death, our family has worked to prevent similar tragedies while supporting responsible scientific research. We established a nonprofit organization, the Elizabeth R. Griffin Foundation, in her name to continue this effort. In 2018, the Foundation became the Elizabeth R. Griffin Program at Georgetown University’s Center for Global Health Science and Security, building on the Foundation’s legacy promoting safety in research and clinical laboratories worldwide.