Jeff Pearlman

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Dr. Celine Gounder

#302
The HIV/infectious diseases specialist fears neither Ebola, AIDS nor her own mortality. But humanity's collective loss of empathy? That keeps her up nights. POSTED March 29, 2017

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Back in the day, when I was a journalism youngin, I served as the seventh or eighth man on Sports Illustrated‘s basketball team.

We played down on the courts at Chelsea Piers in New York City, and the games were a genuine ball. We were fast, we were deep, we were combative. We weren’t the Golden State Warriors, but for a collection of scribes, we did quite well.

Anyhow, while the team was strong, we only had a cheering section of one. Her name was Celine Gounder, and she was the girlfriend/future bride of Grant Wahl, our excellent soccer writer/solid small forward. Were I on the bench, I’d often look over at Celine at marvel at the merging of commitment and boredom. It looked like there was nowhere else she less wanted to be, yet as the other girlfriends (mine included) stayed home, she stood out as a loyalist.

I bring this up because some two decades later, Celine’s steadfastness remains on display as she travels the world in her work as an HIV/infectious disease specialist and internist. In 2015 she spent two months volunteering as an Ebola aid worker in Guinea. Between 1998 and 2012, she studied TB and HIV in South Africa, Lesotho, Malawi, Ethiopia and Brazil. In other words, she’s doing good and doing good and doing good where good is often in short supply.

In today’s magical 302nd Quaz, Celine talks everything from enduring the grossest of sights and smells to enduring the grossest of American presidents to enduring infectious diseases up close. You can help fund her documentary, “Dying to Talk,” here, follow her on Twitter here and visit her website here.

Dr. Celine Gounder, you’ve come a long way from basketball boredom.

You’re the Quaz …

JEFF PEARLMAN: Celine, I’m going to start with an unorthodox one. So you’re a practicing HIV/infectious diseases specialist and internist, among other things. Which means, I have no doubt, you’ve seen stuff that would make most of us pass out. And I’ve always wondered this—are doctors born with the ability to not be grossed out by blood, by guts, by nails in skulls and half-decayed flesh? Or do you develop a hardness over time? How has it gone for you?

CELINE GOUNDER: I think there are different ways in which doctors, nurses and other health care workers become jaded over time, some necessary and some dangerous to ourselves and our patients. Blood, flesh-eating bacteria or putrid sores don’t gross me out. Smells sometimes still get to me, but in my line of work, I’m often wearing a mask, gown and gloves. But I really don’t like vectors of disease, especially bats and rats. When my husband and I visited the Botanic Gardens in Sydney, Australia, I had to run for cover, gagging at the bats overhead.

Being desensitized to blood, guts and gore isn’t dangerous, but losing our empathy is. The rigors of medical training push people to their mental, physical and psychological limits. Just over the course of four years of medical school, students’ ability to empathize with their patients takes a big hit. At least half of physicians in the U.S. report burnout—exhaustion, cynicism and ineffectiveness—and burned out doctors provide worse care.

In the U.S., health is not a human right, it’s a privilege. At the same time, altruism is a core value of the medical (or education or social work) professions. But our health system treats patients like widgets and health care providers like plumbers or electricians on a moneymaking assembly line. Moreover, the way we value health care providers is not proportional to the quality (or even the quantity) of our service, but to the way society values our patients, and I can tell you, they aren’t all valued equally. Our professional values are at odds with the system, and that’s intensely demoralizing.

There’s no question I’ve experienced these same feelings of burnout. My way of coping is to fight the good fight when I’m on the job caring for patients, but to provide direct clinical care only part-time. I need time in between to reflect, recharge and bear witness—but that comes at a very real cost too.

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J.P.: In 2015 you spent two months volunteering as an Ebola aid worker in Guinea. Most people (myself included, I’m embarrassed to say) would want nothing to do with Ebola. The name alone evokes panic, fear, dread, all of our bases mortal impulses. So what made you go? What did you learn? And what is your documentary “Dying to Talk” about?

C.G.: I grew up and became a doctor in the age of HIV, another disease that also conjured panic, fear and dread. But infectious diseases like HIV, tuberculosis, leprosy and Ebola have also inspired tremendous human kindness, love, sacrifice, courage, perseverance and beauty. Like Ebola, it’s a disease that kills the most vulnerable, the poor, the stigmatized and the marginalized. I became an infectious disease specialist because it was a way for me to fight social inequity using the tools of medicine and public health. So when Ebola exploded in West Africa, I couldn’t imagine sitting on the sidelines.

In some ways, epidemics are all the same, and yet they are as unique as the cultures of the people affected. They make us more fearful of the sick—the “other”—lepers who are to blame for their illness. In Guinea, people near the coast blamed the spread of Ebola on “primitive” forest peoples for eating “bush meat.” Americans spoke fearfully and hatefully of “dirty” Africans. In the 1980s, government officials cracked homophobic jokes about HIV.

Politics inevitably frames the way we view epidemics and respond. In Guinea, the Ebola epidemic arrived on the eve of the country’s second democratic presidential election, and in the U.S., during our midterm elections. Guinea is a country where politics and government service are seen as routes to self-advancement, not public service. Early messages about the Ebola epidemic in Guinea could easily be confused with propaganda. Politicians arrived wearing the yellow scarves and logos of the ruling party. Faced with a ruling party that appeared to use Ebola as an excuse for political campaigning, the opposition party spread rumors about the origins of Ebola, sowing confusion and distrust. Guineans flaunted presidential declarations of public health emergency and instructions on how to prevent disease transmission. Meanwhile, back in the U. S., politicians like President-elect Donald Trump called for travel bans, and Governors Chris Christie and Andrew Cuomo, mandatory three-week quarantines for travelers returning from West Africa.

In the shadow of infectious diseases emerge parallel epidemics of mistrust, rumors and conspiracy theories, especially when people feel voiceless and powerless. Many Guineans spoke of “Ebola business”— their way of expressing frustration at the lack of transparency around Ebola control activities, especially management of the massive infusion of funds into the country. Government officials were accused of manufacturing Ebola to keep their hold on power or to line their own pockets. Expats were seen as Ebola mercenaries who weren’t of and with the people and who could leave at any moment. Meanwhile communities failed to see those funds trickle down to their level and have a tangible impact on the ground. Excluded from decision-making and perceived profiteering, the public was cynical about the true motives behind the Ebola response. Similarly during the early years of the HIV epidemic, gay men questioned the true motives behind bathhouse closures. Others spread rumors that the CIA invented HIV to kill homosexuals and Africans. With the arrival of the Zika epidemic, we’ve heard conspiracy theories that vaccines, pesticides or genetically modified mosquitoes spread the virus, and that the Gates Foundation or Monsanto invented Zika.

In early 2015, I spent two months volunteering as an Ebola aid worker in Guinea, but in my free time, I interviewed survivors, anthropologists, religious leaders, doctors, nurses, local journalists, youth and women leaders and average citizens living in the community to understand how the crisis was affecting them. I’m currently making the documentary “Dying to Talk” about the West African Ebola epidemic because I think it’s more important now than ever that we learn the lessons of Ebola and other outbreaks. We’ll see more diseases like HIV, Ebola, MERS and Zika emerge (or reemerge) and spread faster than ever before. There’s no turning the clock back on globalization. It’s in our enlightened self-interest to listen, understand and care about the rest of humanity in order to protect ourselves.

It’s been both fun and frustrating to make a film. I’m learning by trial and error as I go. Other than financing, my major challenge is to figure out how best to shape the narrative. Many in the film industry have advised me to include myself in the film to serve as an empathic bridge of sorts, and they tell me I need to include some celebrities (anyone know Angelina Jolie or Jon Stewart?). I’m really proud that all my reporting on the ground was with Africans, almost all Guineans, in contrast to much of the Western-centric media coverage of the Ebola epidemic—what former New York Times journalist Howard French called “Africa without Africans.” I’m hesitant to include myself (I’m in the trailer), because I’m not the story and because I know there will be those who think it’s self-serving. But I’m willing to be in it if that’s what it takes to get the message out there.

J.P.: Random question—but you’re a curious, well-educated, accomplished American. We recently had a president elected basically because he’s “going to make America great again!” How do you not bang your head against a wall and think, “Jesus Christ, we are such a stupid species”?

C.G.: Like so many others, I’ve been giving this a lot of thought … there are three books I’ve found especially helpful in thinking this through: “Wired for Culture” by Mark Pagel, “American Nations: A History of the Eleven Rival Regional Cultures” by Colin Woodard and “Strangers in Their Own Land” by Arlie Russell. I’ve also added those cited here to my reading list.

I think humans are first and foremost emotional, social animals. We’re not all that rational. We function in groups, and groups are governed by culture. Our loyalty to our culture is strong because it’s an important survival skill. When we say that people are voting against their own interests, we’re framing their voting behavior at the individual level, not in terms of the cultures to which they belong.

Secondly, I think we all—across the political spectrum—have a lot of soul searching to do. The way we work and live is undergoing a massive revolution a lot more quickly than we realize; this is going to be even more disruptive than the shift from agrarian to industrial economies. It’s not just coal miners and factory workers who are going to lose their jobs (for a little background reading, see herehereherehere and here). It’s also accountantsfinancial analystscomputer programmerslawyers and doctors like me. Many Americans—especially the earliest casualties of this economic disruption—voted for Trump because they were voting for a change. They understand intuitively that neither political party has plans to address what’s to come. While I vehemently disagree with that vote, I think we’ve got to start coming up with solutions to help the vast majority of us who’ll eventually lose our jobs to automation.

J.P.: Does death scare you? I’m not talking about the deaths of others—I mean your death. You’ve seen it up close. Does the potential eternal nothingness keep you up at nights? And how does being a doctor impact your view?

C.G.: No, I’m not afraid of my own death. To me, death is the end of fear. What is important to me is doing the most with my life, and what scares me is failing to do that. I also fear a painful, protracted death, which has, unfortunately, become the norm. So I’m doing what I can now to avoid disability and disease later. I eat healthy. I work out with a personal trainer. I’m big on squats, deadlifts and core strength. Your ability to sit down cross-legged and then get up again without using your arms is an easy test of your flexibility, strength and risk of dying. I can’t tell you how many of my patients can’t sit up in bed without a boost from me or their hospital bed. Many Americans suffer from chronic neck and back pain due at least in part to poor posture and core strength. Cardiovascular exercise is important too. Our gym just closed, so my husband and I are now looking for a new place for HIIT classes in the city. Any recommendations?

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J.P.: Greatest moment of your career? Lowest?

C.G.: The lowest point in my career is what some might have called the greatest.

After I finished my medical and public health training (twelve years on top offour years of college), I stayed on at Johns Hopkins for a couple more years. I was well positioned to stay at Johns Hopkins as an academic researcher, but was becoming increasingly dissatisfied and disillusioned. I also didn’t like that in academia we were forced to work in silos, structured around a more senior mentor and his (or occasionally her) NIH grants. In my experience, the NIH grant system promotes “safe” research, not innovation. I wanted to be in a place where I could be creative, have fun working with others and feel like I was helping people. Academia didn’t feel like the right fit.

I looked for jobs in public health both in the USA and abroad. Meanwhile, I was starting to burn out on travel overseas—I was flying to sub-Saharan Africa every six to eight weeks for a couple weeks at a stretch—and spending a lot of time away from my husband Grant, who also travels a lot for his job. We both thought we’d ultimately like to move back to NYC one day. He’d lived there after college and I lived there part-time with him in the late 1990s until we moved to Seattle together. So I focused my efforts on finding a job in NYC, and specifically at the NYC Department of Health.

I eventually landed a job as Assistant Commissioner, leading the NYC Department of Health’s Bureau of Tuberculosis Control—the current CDC Director Tom Frieden’s job in the early 1990s. But the place had changed a lot in the twenty years since. In the early 1990s, NYC was experiencing a spike in TB cases among the homeless and HIV-infected patients and funding was plentiful (thanks to Reagan Administration era cuts in public health infrastructure). It took about a billion dollars to control that TB outbreak.

I arrived in the job post-recession, post-sequestration. While I understood we’d be facing budget cuts, I didn’t realize what little control I’d have over who would be cut. I spent my first three months on the job meeting with as many of my staff of 250 as possible. I spent time with them in the clinics and the communities we served. And I put together a layoff plan in collaboration with HR and the Office of Labor Relations, only to realize that I was really powerless to target those cuts. Here’s an example to illustrate how I was trying to target the layoffs: I polled the staff to find out what languages they spoke. TB cases in the USA, especially in NYC, are largely among the foreign-born, in contrast to the early 1990s, when many of the cases were still among U.S.-born persons. It’s important to have field workers who make home visits who can speak to the TB patients. But there’s also a divide among the staff: older employees are largely African American or white while younger employees are largely foreign-born or white. And this is where the union-driven system of favoring seniority over skills and job performance becomes a real problem.

I felt physically ill going to the office. After much soul searching—and my boss’s generous and kind support—I decided to resign. From that experience, I learned that being the boss or having a big title don’t necessarily translate into impact. I found the job stifling. I couldn’t apply my scientific expertise or be creative. I believe that good leaders are good mentors to others and should measure their productivity through the accomplishments of their mentees. I didn’t feel like I could reward good work in a meaningful way. I could only scold bad performers. I also realized that this early in my career I wasn’t quite ready to give up the feeling of more tangible accomplishment. I didn’t like spending most of my day at a desk in the office or in meetings. I had become used to the more flexible life of an academic. You might have to work a lot, but you at least had the freedom to dictate when, where and how you did it.

My greatest accomplishment? I’m working on it … stay tuned.

Celine, husband Grant Wahl, two furry things and a baby.

Celine, husband Grant Wahl, two furry things and a baby.

J.P.: A few years ago I wrote a book about the 1980s Lakers—and, obviously, a big character was Magic Johnson. As you surely remember, when he contracted HIV there was this national irrational fear. Will he bleed on another player? What about sharing water? Surely he’ll die as a 90-pound skeleton. On and on. Now, however, people seem to shrug off HIV. Ho-hum. I wonder, in your eyes, if our general modern take on the disease is fitting with where we are, treatment-wise? Or have we grown too lax?

C.G.: If I were forced to choose between having HIV or diabetes, I’d choose HIV. We now have many effective, well-tolerated one-pill, once-a-day treatment options for HIV. If you have HIV, start treatment early after infection and take your medications everyday as prescribed, you can live a nearly normal healthy life. But I still wouldn’t wish HIV on anyone. While we don’t see many HIV-infected people dying from exotic infections (e.g. bird tuberculosis) anymore, we do know that if you have HIV, you’re at higher risk for cancer, cardiovascular disease, kidney and liver disease and dementia. Moreover, HIV is an expensive disease to treat and is still very stigmatized.

J.P.: Big, annoying question that fascinates me—how do these things unfold for you? What I mean is—OK, you’re Dr. Gounder, and you decide you want to study TB in Ethiopia. How does it happen? From decision to being on the ground? Do you come up with the idea, then pursue? Do you see some fellowship or such and think, “I’m going for this?” And when you arrive, is it, “Hey, she’s here!” Or “OK, figure it out on your own …”?

C.G.: First and foremost, where I work has been dictated by the need. It wouldn’t make much sense to go to Norway to set up malaria programs.

Much of this work is also about relationships and funding streams. Relationships are usually in the form of research collaborations or contracts for a specific scope of work. You’ve got funding for research and for programs, and there’s some overlap. There’s funding from the in-country governments, which rarely funds expats; government agencies (e.g. the U. S. Agency for International Development, the U. S. Centers for Disease Control and Prevention, the U. S. President’s Emergency Plan for AIDS Relief, the U. S. National Institutes of Health, and their foreign analogues like the UK’s Department for International Development); multilateral organizations (e.g. the World Health OrganizationUNICEF); foundations (e.g. the Gates Foundation); and religious charities. Non-governmental organizations (e.g. Partners in HealthInternational Rescue CommitteeSave the Children) are typically funded by some combination of all these types of funding.

My relationships were largely shaped by my academic connections. A colleague from Johns Hopkins was leading TSEHAI’s efforts to scale up HIV-related care in Ethiopia. Tuberculosis is the most common cause of death among people with HIV in the world. I reached out to my colleague in Ethiopia to see if I could help her incorporate TB-related activities in their work. I worked with other colleagues in South Africa, Lesotho and Malawi to do the same. These projects were supported by a combination of funding from the Gates Foundation, NIH and USAID.

Volunteering for the Ebola epidemic was a bit different. I started applying to volunteer as an Ebola aid worker in the summer of 2014, first with Doctors without Borders (Médecins Sans Frontières, MSF), and later with the World Health Organization, Partners in Health, Save the Children, AmeriCares, the Red Cross, the International Rescue Committee and the International Medical Corps. MSF initially told me that they were only accepting volunteers who’d worked with them previously or who had experience with viral hemorrhagic fevers (an exceedingly small group of people at that time). I asked if I could get the appropriate training whether they’d take me. They said sure. I then reached out to several biosafety level 4 labs throughout the USA and asked if they would be willing to train me as they do their staff. A couple said yes, if I could fly myself out there. One of those labs then got back to me to say that the CDC had also reached out to them to organize a training course of their own. I then signed up for the CDC course. I went back to MSF to ask about volunteering. By this time the epidemic was completely out of control, but they simply didn’t have the beds or capacity to take on more volunteers. As Dr. Armand Sprecher with MSF told me, “there’s no point in hiring more pilots and flight attendants if you don’t have planes to fly.” So I looked elsewhere.

The application process with each of these groups was chaotic. They were inundated with applications from interested people, but didn’t have the ability to sift through them. People volunteered for all sorts of reasons. Many didn’t have the right skill set, so it was important to vet the applicants. I eventually heard back from Partners in Health. I passed the two interviews and vetting process and was offered a placement in Sierra Leone. Then over the holidays in December 2014, I received a call informing me that they were withdrawing the offer due to my media ties. I went back to applying and eventually landed another placement with International Medical Corps, this time in Guinea.

J.P.: You’re married to Grant Wahl, Sports Illustrated’s excellent (and always on the road) soccer writer. You, too, are always on the road. How do you guys make it work? What’s the longest you’ve gone without seeing one another?

C.G.: Good question. We try our best, but there’s no perfect solution.

We talk every day. We’re very much involved in the lives of each other’s families. When we’re in the same place, we enjoy each other’s company and shared interests. We also understand our limits. We realize there’s only so much we can take on, individually and as a couple. I don’t believe you can have it all, do everything well and be happy, at least not in our society. Grant and I don’t have kids because we don’t have the time or energy a child deserves and the time and energy it takes to maintain and nurture our marriage. I’d rather a husband and no kids than kids and no husband. Our two toy poodles, Coco and Zizou, are about as much as we can handle, and those two little furballs are our bundles of love and joy. As I write this, they’re snuggled up between me and Grant’s mom.

But these are very personal decisions. My mom was an amazing stay-at-home mom. My sister had a baby a year and a half ago and took almost a year off work afterwards to be with her daughter before going back to work part-time. My mom and my sister each made the right decisions for themselves and their families, as Grant and I have for ours.

That said, I also don’t travel as much as I used to. I left Johns Hopkins in 2012 in part because I’d burned out on all the traveling I was doing for work. Grant and I tried to align our trips as much as we could, but it still took a toll on us and our marriage.

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QUAZ EXPRESS WITH CELINE GOUNDER:

• Rank in order (favorite to least): Tim Howard, the Bureau of Tuberculosis Control at the New York City Department of Health and Mental Hygiene, George Patton, handbags, Taco Bell, Adele, John Travolta, ESPN: The Magazine, Al Gore, Ben and Jerry’s: Al GoreBureau of Tuberculosis Control at the New York City Department of Health and Mental HygieneGeorge Patton, handbags, Adele, John TravoltaTim HowardESPN: The Magazine (I love the Body Issue), Ben and Jerry’sTaco Bell.

• Someone sneezes at the table next to you without covering up. Your reaction is?: To give them a look of disgust. Especially since I know what a sneeze really looks like. But don’t cover your mouth and nose with your hands when you cough or sneeze. Use a tissue or the crook of your elbow.

• One question you would ask Desmond Tutu were he here right now?: How can the United States undertake its own truth and reconciliation process to help our country heal from its history of violence against blacks and Native Americans?

• What’s the grossest thing you’ve ever seen?: I find smells to be far more off-putting than anything I’ve ever seen. Smells trigger an especially primal part of the brain.

• Ever thought you were about to die in a plane crash? If so, what do you recall?: Never. But I was asked to check on two sick passengers when flying back from Guinea after two months of volunteering during the Ebola epidemic. It crossed my mind that either passenger could have had Ebola.

• I have to think your last name is butchered quite a bit. What are the common misspellings?: Grounder

• Five favorite places to eat in New York City?: If I had to eat one cuisine for the rest of my life, it would be a toss up between sushi and French food. But since my mom is an excellent French cook and I’m a half-decent one, I tend to prefer going out for sushi. Our two current go-to spots are: Sushi Seki in Chelsea and Sugarfish in the Flatiron District. (We also love Kura, but it’s tiny, so you can’t just walk in; but the jewel box size and hushed whispers over soft jazz and exquisite fish make for a divine experience. We also love Sushi Nakazawa, but not only do you need a reservation well in advance, it’s also a big splurge.)

We enjoy going to BXL Zoute in Chelsea, Morandi in the West Village and LPQ in Central Park with our dogs when the weather is nice. Zizou likes eating bits of salad off my plate.

• Three memories from your first date?: With my husband Grant? 1. A black Argentine leather jacket; 2. Orangina; 3. Black and white cookies

• In exactly 22 words, make a medical argument for eating your own toenails …:

Hair and nails

Are made of keratin

Kid malnourished?

Got marasmus or kwashiorkor?

Eating nails might reduce hair loss

But won’t save lives

• As you surely know, at the end of “A Walk to Remember,” Jamie walks down the aisle for her wedding to Landon. She has leukemia, is days away from dying, but looks great and does everything without help. Is that even possible?: I haven’t seen it. I suppose she could have died suddenly if she had a leukemia-related complication like a blood clot.

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Once again, Jeff Pearlman has produced an exhaustively researched, elegantly written book that re-creates one of the most colorful and memorable teams of the modern era. No basketball fan's bookshelf will be complete without it.

— Seth Davis, author of Wooden: A Coach's Life