This week we present two stories from our back catalog of people having to handle previous epidemics.
Part 1: As a pediatrician in the 1980s, Ken Haller comes across a disturbing X-ray.
Ken is a Professor of Pediatrics at the Saint Louis University School of Medicine and Cardinal Glennon Children’s Hospital. He serves on the boards of the Arts & Education Council of Greater St. Louis, the Saint Louis University Library Associates, and the Gateway Media Literacy Project. He has also served on the board of the Missouri Foundation for Health and as President of the St. Louis Pediatric Society; the Missouri Chapter of the American Academy of Pediatrics; PROMO, Missouri’s statewide LGBTQ civil rights organization; the Gateway Men’s Chorus, St. Louis’s gay men’s chorus: and GLMA, the national organization of LGBT health care professionals. He is a frequent spokesperson in local and national media on the health care needs of children and adolescents. Ken is also an accomplished actor, produced playwright, and acclaimed cabaret performer. In 2015 he was named Best St. Louis Cabaret Performer by the St. Louis Post-Dispatch, and he has taken his one-person shows to New York, Chicago, Denver, and San Francisco. His special interests include cultural competency, health literacy, the relationship of medicine to the arts, the effects of media on children, and the special health needs of LGBT youth. His personal mission is Healing.
Part 2: On her first day working in the White House under President Obama, microbiologist Jo Handelsman receives some bad news.
Dr. Jo Handelsman is currently the Director of the Wisconsin Institute for Discovery at the University of Wisconsin-Madison, as well as a Vilas Research Professor and Howard Hughes Medical Institute Professor. Previously, she served President Obama for three years as the Associate Director for Science in the White House Office of Science and Technology Policy (OSTP). She received her Ph.D. at the University of Wisconsin-Madison in Molecular Biology and has served on the faculties of UW-Madison and Yale University. Dr. Handelsman has authored over 200 papers, 30 editorials and 5 books. She is responsible for groundbreaking studies in microbiology and gender in science.
Episode Transcript
Part 1: Ken Haller
In the summer of 1981, I was beginning my pediatrics residency at Lenox Hill Hospital on Manhattan’s Upper East Side. The year before, I'd done a rotating internship at Nassau Hospital in Mineola, Long Island, about ten miles from where I grew up in a town called Hicksville. Yeah. I know.
It had always been my dream growing up in those post-war tract house suburbs, that someday I would live in New York City, especially after I was old enough to be able to buy tickets to the Long Island Railroad and go in by myself and see the skyscrapers and the parks and the museums and the Broadway shows.
It wasn’t until that year, though, that it really happened. What was really best about it was that I was moving in with Bob Corsico, my boyfriend, my partner, my lover. It was the ’80s.
And a funny thing, even though Bob and I met and became friends and fell in love in Omaha, Nebraska, when we were both students in Creighton University, Bob grew up in Syosset, Long Island, about two miles from where I grew up. It’s kind of like we were always meant to be together, like kismet.
The thing is when we both graduated from our respective programs, we moved east together. That first year, I lived in hospital apartments in Mineola and he lived at his parents’ house, got a job in the city and would commute in each day on the train. So finally, after a year, we were going to live the dream and live in New York City.
For those of you who may not have been adults in the 1980s, or even on the planet, for gay men to move in together in those days was kind of a big deal. I mean, just three years before that, Anita Bryant and her Save Our Children coalition had succeeded in overturning a gay rights ordinance in Miami, Florida, by expounding on how horrible homosexuals were with children. So it wasn’t something that you did lightly, especially if one of you was going to be going into a training program to become a doctor who takes care of kids. But love would find a way.
Now, Lenox Hill Hospital started out many, many years ago as the German dispensary in 1857 to serve the growing German community in New York’s east side. So basically, it really was a community hospital. It had a very small pediatrics program, only four residents in each of the three years. That meant that each of us spent a little bit of time at other hospitals, larger institutions, to get sub-specialty training that we just couldn’t get at Lenox Hill.
Which is why, in August of 1981, I found myself at Memorial Sloan-Kettering, then, as now, one of the premier cancer hospitals in the United States, to do my pediatric hematology-oncology rotation. I was taking care of kids from all over the world with cancer and leukemia. Memorial was the place where the mysterious cases were sent and, for many, including kids, it was sometimes the hospital of last resort.
Ken Haller shares his story with the Story Collider audience at the Community Room, UMSL at Grand Center in St. Louis, MO in May 2017.
Each morning, our team -- the attending physician, the residents, the interns like myself and the medical students -- would go down to the radiology department and go over the x-rays that had been done the day before with the radiologist. We had just finished up when he said, “Wait a minute. I know you guys are peds, but I wanna show you this one film that’s really interesting.” That’s when he sort of rifled through the x-rays that are on his desk, picked one up, and slapped it up on the back of the view box.
“Take a look at this. What do you think?”
We all stood in silence as we regarded this strange film. In my head, I started to go through the checklist that I learned as a third-year medical student about how to read a chest x-ray. Okay, by the size and soft tissue it appears to be a thin adult, probably male since no breast shadows were evident. Good quality film. No rotation. Heart size, normal. Normal shape. Lungs… something about the lungs.
For the most part, they were almost black fields indicating that the x-rays had gone clear through the mostly air of the lungs to expose the film behind, interrupted at regular intervals by the gentle white arcs of the ribs bordering and encircling the chest. But in the black, where there should be nothing: more white. Something. Some things blocking the x-rays, floating in space and looking like giant cotton balls.
Fluffy infiltrates is a term that radiologists sometimes use for lesions such as these. I thought I could rattle off a few things that might cause this, but it would help to know more about the patient. I knew my place so the resident was the one who asked the question.
“What’s the history?”
“Twenty-seven-year-old, previously healthy white male.”
And I thought, That makes no sense. This is the sort of thing that’s usually seen in a fungal pneumonia in really old people.
“Yeah,” the radiologist said, “he's been coughing for a few months. Anyone wanna guess what this is?”
The attending said, “Fungal pneumonia.” I thought, Cool. Nailed that one.
“Nope,” the radiologist said, clearly pleased at having stumped a clinician. “Anyone else wanna take a guess?”
Silence.
The radiologist looked over the crowd, and with a sly smile, he said, “Pneumocystis carinii pneumonia.”
His audience did not disappoint. This revelation actually brought a gasp from the attending. For myself, I thought, That’s impossible. Pneumocystis was thought to be a protozoan and a very rare cause of disease in otherwise healthy human beings. In fact, my only previous experience with it had come the year before when I was doing a month of internal medicine at Nassau Hospital. I saw this woman in her late eighties who was diagnosed with it just before her death. For it to be present in someone this young and this healthy was inconceivable.
The attending was mirroring my thoughts. “How do you know that’s it?”
Ken Haller shares his story with the Story Collider audience at the Community Room, UMSL at Grand Center in St. Louis, MO in May 2017.
“Pulmonary did a biopsy, but shouldn’t your next question be, what’s a pneumonia doing at Memorial?” We looked at each other. Yeah, it should. Why, indeed, would an infectious pneumonia be admitted to a cancer hospital?
Again, the radiologist scanned the crowd and said, “Because he was originally referred here for Kaposi’s Sarcoma.”
Again, his audience was thunderstruck. Kaposi’s Sarcoma is a form of skin cancer that often looks like a bluish-purple bruise. In fact, most people think it is a bluish-purple bruise until they realize after weeks or sometimes months that it hasn’t gone away. That’s when they go to the doctor to have it checked out and they get the bad news.
But again, it was only seen in very old, sick people whose immune systems were not working. What was going on with this twenty-seven-year-old?
“Yeah, so the guy comes in. They find out he's been coughing and they get this chest x-ray. He's been losing weight. They find out it’s pneumocystis and they're stumped. So they talk to other docs around town. They find out that he's not the only one with this stuff going on -- like five, six cases like this, pretty much like it, right here in New York. And you know what they all have in common? They're all homosexual.”
I don't know if I broke into a sweat. I imagined that my face flushed and I’m pretty sure that my heart started pounding like one of the jackhammers out on York Avenue. I stared at the x-ray for something. What?
“Wait a minute,” the attendee said. “I think I read something about this in Morbidity and Mortality Weekly Report. These clusters of homosexuals coming down with these weird diseases. Here, San Francisco, Atlanta.”
“This is one of them,” the radiologist said, as if he were presenting a rare white tiger.
Pneumocystis carinii, Kaposi’s Sarcoma, fluffy infiltrates -- words I'd heard, things I'd seen, but, in the pit of my stomach, I knew I would see them over and over and over again in hospitals, in clinics, in bars, in friends. Something bad was happening, and this guy, this twenty-seven-year-old, he could be me. Someday, I wondered, would I be him?
I don't remember that much more of the conversation that followed as people started talking about what they’d heard and hadn’t heard, what they knew and didn’t know about these clusters of cases. Someone said something about sexual spread. Someone else, something about a term she’d heard before called Gay Lung Disease. Someone else made a wisecrack about faggots. I stood silent staring at patterns of shadow and light.
Once I got back to the inpatient floor, I had a lot of sick kids to take care of and it really didn’t give me time to think much about this guy with this thing with no name. It wasn’t until much later as I finished my work and I was walking slowly the fifteen blocks back to my apartment at Second Avenue near 80th in the dark, still, hot August evening that I started to feel the unease of the morning return.
I got home late that night. Bob was there. He’d already eaten, as usual. “Long day, huh?”
I said, “Yeah.”
He fixed me a plate, as usual. “Yeah, long day,” I said as I looked up at him, almost examining him.
That night I held Bob in bed as we slept and I listened to his breathing, his strong, healthy breathing and I wondered about the future. I wanted this moment to last forever. I didn’t know then that this twenty-seven-year-old guy I would never meet would be one of the first gay men diagnosed with something that would briefly be called GRID, for Gay-Related Immune Deficiency, and later would become known to the world as Acquired Immune Deficiency Syndrome, or AIDS, and that a virus that would be dubbed Human Immunodeficiency Virus had already spread to many of my friends and that many of them would die in the coming years.
I didn’t know then that Bob and I would split up three years later, but that we would become very best friends very soon after that, and we would remain best friends until he died at the age of thirty-six on Thanksgiving weekend 1994.
I didn’t know then that Bob would come to me in a dream in 1997, a dream which I know to be a real visitation against all reason and all science because it was briefly interrupted by a phone call which I did not answer, but which I found out later was from Bob’s mother, who was calling and said she felt compelled to call at that moment just to ask how I was.
I did not know then that, in that dream, Bob would comfort me and tell me that he was at peace, that death was nothing to fear, that he would always be with me and he would always love me. Kismet.
I didn’t know then that this day would mark the split between before and after in my life, and that I would be one of the survivors to tell the story of my people on the time of plague.
I didn’t know any of this as I held my lover on that sultry night in August as he slept peacefully in my arms, or earlier that day as I stood frozen in the dark, staring at the chest x-ray of a nameless, doomed twenty-seven-year-old gay man.
What I did know, as I finally fell into a troubled sleep that life, as I knew it, had changed forever.
Thank you.
Part 2: Jo Handelsman
I wanted to tell you about the winter of 2000… I'll start my story in the winter during a three-foot snowstorm in Connecticut. It was right after Barack Obama had been elected for the second time. In fact, right after inauguration.
I couldn’t get out of my driveway so I was working at home in my study and the phone rang. It was John Holdren, the key science advisor for President Obama and he very calmly said, “The President and I would like you to come to Washington, serve in the White House as a science advisor and direct the Science Division of the Office of Science and Technology Policy. Now, don’t say no. Read the president’s Science Agenda.”
Well, I said no anyway very quickly.
I said, “Thanks so much, John. Wonderful offer, but I’m afraid I have the best job in the world.” You see, I was a professor at Yale at the time. And I had these wonderful students. I had a lab full of researchers and I owed them a lot. I owed them my support and my advice and my guidance. I said I can’t just walk out on them.
So we cordially hung up and I was watching the snow fall and my husband, who was also snowed in came into my study and he asked what the call was about. So I told him.
And he said, “So you're going to do it, right?”
And I said, “You're kidding, right?”
And I looked at him and I couldn’t believe it because this is my husband who knows me so well and knows how I love my science, I love being in the lab and I love my students, and I have a sense of responsibility. Anyway, why would he think that I would want to hang out with boring, bureaucratic scientists in the government?
He shook his head and he walked out of my study and he said, “When your president calls, you listen.” And I knew he wasn’t kidding.
So I felt like my patriotism had just been questioned and I know I had to take this offer a little more seriously, so I thought more about it. One thing really lasted from what my husband said. He said, “When your president calls…” This was my president. This was President Barack Obama who not only was brilliant and sweet and funny and I thought a great leader but he loved science. He was every scientist’s president so how could I just say no so quickly.
So I went down to Washington and I met with John Holdren and I asked him, “Why me? Out of all the thousands of scientists you could have in this country, why would you want me? I know nothing about policy and I know even less about politics.”
He said, “Don’t worry about that. Leave all that to us. We’ll teach you that. I want ideas. The president needs ideas in science.”
And he proceeded to describe a job where I could set my own agenda. I could work on any aspects of science that I wanted and I could teach the president about those aspects of science. That started sounding pretty cool so I had to think seriously.
I went back home to Connecticut, I thought some more and eventually I accepted the position. But then even after I accepted it, I withdrew twice because the White House Ethics Office gave me a hard time, first, about publishing papers.
Jo Handelsman shares her story with the Story Collider audience at Caveat during our 8th Anniversary show in May 2018. Photo by Carly Hoogendyk.
They said, “You cannot publish papers. That’s a conflict of interest. Can you just see the headline in the Washington Post, Science advisor to the president publishes in the Journal of Bacteriology.” I couldn’t quite figure out why this was a problem, but we worked that one out.
Then they said I couldn’t visit my students. I said, “Well, you're asking me to actually create a conflict of interest.” Eventually I said, “Well, I just can’t do this job. I would not compromise.” But eventually they compromised.
So it was very satisfying. I countered my nemesis in that case. And I went to Washington and it took a long time for the senate to finally confirm me not because they didn’t like me but because they didn’t vote. They eventually did. I was confirmed. And I went to work and I got sworn in.
In my first morning after I was sworn in, 45 minutes later, I was sitting at my big desk in this gigantic Victorian office with these high ceilings and the desk, for the first time in my life, was completely clear. This enormous, mahogany, shiny desk had nothing on it.
So I immediately started musing about all the things I could do. Should I start with my agenda on science education or should I try to save America’s soils or should I work on precision medicine?
Just as I was thinking about this, my staff member Mei-Jou knocked on the door said, “How do you like your job so far?”
“Well, first 45 minutes have been pretty okay.”
She said, “Well, I hope you still like it when I’m done with you.”
She came in and closed the door and Mei then told me about the Ebola epidemic that was mounting in Africa. And she told me about this epidemic that was characterized by people dying in blood on the streets and healthcare workers dying from doing their jobs because they caught Ebola from their patients. She described it as a growing epidemic that was threatening the world and needed the United States to take leadership.
All of a sudden, my job had gotten a lot harder and a lot scarier. I pushed my own agenda off. I knew I was delaying it but I postponed it to work on this much more urgent and very scary issue.
I knew nothing about public health when I started. I was a microbiologist for decades but I didn’t do the kind of microbiology that was needed to solve the Ebola crisis. So my first thing to do was to pull together people who actually knew something and so I asked members of 26 federal agencies to come to a meeting at the White House and talk about their plans for Ebola.
When I walked into the room and found that every single person I had invited at all of these agencies had shown up, and these were leaders of CDC and USDA and NIH and all branches of the military, I knew I had acquired a super power and it resided in the line, “Hi. I’m calling from the White House.” That’s all it took to get these people to a meeting.
Well, my task force pulled together. They had lots of plans for how to screen at airports and keep the epidemic out of the United States, when we should be moving into Liberia with help and support, and many, many other issues that I could never have handled.
After we got started then I started hearing things as much through the news as I did through my email at work, things like President Obama announced that the military was moving into Liberia. The army was taking over the logistical part of Ebola. And I thought, “What does the army know about infectious disease? I’m the microbiologist.”
But sure enough, I learned exactly what the army knows about infectious disease a couple of months later. We were at a meeting in the Situation Room, which by the way doesn’t look anything like what you see on television, and we were having a conversation over video link with the general that was running the Ebola operation in Liberia.
There he was, this big guy in his camouflage fatigues kind of all sprawled out looking very relaxed and told us in exquisite detail all of the great things that the army had done to launch the Ebola response. Mainly, it was setting up the Ebola Response Units that allowed people to be treated. They didn’t have any place for people to be treated and they set up these units across all of Liberia.
So I started asking a lot of questions thinking, “I’m going to stump this guy,” and found that, no, he was extremely knowledgeable and could answer all of my questions.
I suddenly became really impressed and was so grateful to the men and women of the army who had taken that first step. They were the first boots on the ground in Liberia and they had no idea what they were facing. They didn’t know if they were going to get Ebola, if they were going to be exposed, and there were very few healthcare workers to treat them if they did.
But they did an incredible job with military precision, you might say, of setting up these treatment units and preparing for the rest of the Ebola response.
As I walked back to my office, I sort of lost track of the general’s very calming and reassuring voice and the stark reality started hitting me again. We may have all those beds but what are we going to do if we don’t have the trained personnel and we don’t have the supplies? We knew that many of these treatment units didn’t have even running water. A quarter of them didn’t have any running water and most of them didn’t even have gloves and masks, the basic equipment that healthcare workers needed to treat Ebola patients. So there was a long way to go.
What was needed was an act of congress, and we all know how hard that is. We didn’t have the money to buy and there was no allocation to buy the supplies or train the personnel. So there was a request in front of congress and we were waiting for them to approve it. Every day we would hear about the horrors of Ebola and we would see the really grotesque pictures of people dying and the tragedy that was going on. Every day, the consequences of the stalling of congress would be felt in lives lost.
But they kept stalling because they felt no real pressure. They dragged their feet saying that it wasn’t important to Americans because this was happening in a country far away that probably most Americans couldn’t find on a map.
So that was a pretty discouraging aspect. Here was this crisis of human suffering and congress had the ability to do what needed to be done and they wouldn’t do it, which was blocking our ability to do what we needed to do. So there was a lot of despair during that time.
I remember I would walk home every night late from the White House to my dark, lonely apartment and on the way I would think about all the things that I hadn’t been able to do, all the things that we couldn’t fix. And I felt so inadequate. I looked at these pictures everyday and there was one day I remember in particular this picture of a Liberian woman on her knees reaching out toward a stretcher which had a corpse on it that was being carried away by masked healthcare workers. It was so tragic and so painful and these came at us everyday all the time. And everyone felt like a reproach for what I couldn’t do.
I started to feel like an imposter, like I didn’t really know my job because I couldn’t fix this. And I started thinking, well, if I knew more of I had had more experience or I was just better at this job, I would be able to do it.
So one night after one of these long walks home, I came into my apartment and the phone was ringing. It was my husband and I sat there talking to him in the dark for about an hour and I told him how I was feeling, that I was just not good at this. That maybe I shouldn’t be doing this job because I wasn’t being able to solve this Ebola crisis and even make it better.
And he very wisely said, “You're not supposed to solve it by yourself. This is a group activity so be part of the group.”
All of a sudden, there was real safety in numbers. There was a real sense of being part of something larger. We had already seen what our friends in the military could do that we never would have been able to do from the White House alone, and that started reassuring me.
Sure enough, soon after that, the political machine in the White House started working very hard on congress and finally, congress passed the bill that funded the Ebola initiative. So even the politicians had our backs.
Jo Handelsman shares her story with the Story Collider audience at Caveat during our 8th Anniversary show in May 2018. Photo by Carly Hoogendyk.
So I learned a really important lesson there about working as part of a big machine. That big machine really pulled together to get a job done.
Well, it didn’t look so rosy right away. I wish it happened faster but it didn’t. And we still got these reports of deaths and these horrible spreads of the infection to new areas. There was one day where we got a report of 113 deaths in a single day and the numbers were mounting and it was quite discouraging.
Around November, I pulled together my big task force and asked for reports. All of a sudden there was this ray of light. I started thinking maybe there's actually hope here. Because I found out that we had 4,000 trained healthcare workers in Liberia that hadn’t been trained a few months earlier. We had more bed than patients in these Ebola treatment units that the army had set up. And now we had ten labs fully equipped with modern equipment and state-of-the-art techniques for detecting the Ebola virus to do diagnosis. There had only been one when we started. So we suddenly had the tools to begin to handle this epidemic.
And the president of Liberia, President Sirleaf issued her Ebola Must Go campaign that took the country by storm and led to all sorts of innovations, including things like giving cellphones to tribal leaders so that when there were outbreaks in the rural areas, they could call them in and get healthcare workers to come to them.
By December, we were down to ten cases per day. And then down to a trickle and we started to think maybe Liberia could become Ebola-free.
We waited through the beginning of 2015, we waited and I counted the days because it takes 42 days to become Ebola-free with no diagnoses of new cases. We thought we were going to make it and then in March, a woman got sick in Monrovia, the capital of Liberia and she died a week later. So we had to start the count again.
We had several false starts. Finally, in September, September 3, 2015, Liberia was declared Ebola-free.
And it was quite a moment but we couldn’t celebrate because we knew that this virus was so unpredictable that it would pop up again someplace, sometime and we didn’t want to be premature in our celebration. But that was the beginning of the end of the Ebola crisis. Even the other countries where it had spread to began to see a diminution of cases.
So I learned an enormous amount from that process. I learned to appreciate what this government could do. I was so proud to be part of our public health system even though I was this tiny little part, I was a cog in this gigantic thing. This thing that we call government is this unruly and kind of floppy thing that nobody seems to truly understand. I certainly couldn’t comprehend but it somehow gets really hard jobs done. And the people who do those jobs are not boring, dull, bureaucratic scientists. They became my heroes.
I learned a lot also about humanitarian issues and just being human. One of the people that taught me the most about being human was Barack Obama. He always brought the human side to events and one of the things that he always taught us was, “Don’t lose your humanity,” and, “Part of being human is having a sense of humor”.
So at the height of the Ebola crisis when cases were coming in all the time and we were all distracted by how deathly, literally, this epidemic was, I went to visit the president one day delivering a group of scientists who had gotten awards and he was greeting them. We went to the Oval Office and I waited until these scientists trickled out.
I lingered behind and I placed the president right in front of me so that the secret service couldn’t see through him. He was big enough to block because I knew I was going to do something that was illegal and the secret service would probably tackle me if they saw. I was going to give something to the president, which you're not supposed to do.
I pulled out of my pocket a little fluffy, stuffed microorganism. It was a streptococcus, a beautiful, little, red furry thing, and it was the flesh-eating bacterium.
The president was quite enthralled. He loved the flesh-eating bacterium. We had a very serious conversation and he wanted to know all about the lifestyle of the flesh-eating bacterium and what it would eat and actually how to keep it at bay.
He said at one point, “I’m going to keep my eye on this guy.”
When we were done, I started walking out thinking, “Did I just disgrace myself by giving a toy to the President of the United States, the leader of the free world?”
Then I heard his voice behind me and I turned around and he said, “I need one of these for Ebola.”
And I said, “Coming up, Mr. President.”
That night at dinner, I had his chef place a stuffed Ebola virus on his plate and I heard that the president had a very good dinner that night.