Emory MedIcine Magazine Winter 2020

Medicine He survived a fiery motorcycle crash

Then came the hard part

MAN ON FIRE

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WINTER 2020 W H AT ’ S I N S I D E :

READY PHASE ONE 27 CYSTIC FIBROSIS WARRIORS 30 SLEEP DOCTOR 34

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PHOTO BILLY HOWARD

Capturing Spirit AFTER HAVING POLIO AS A CHILD, Saul Mendoza

went on to become a paralympic athlete and won two gold medals, one silver, and three bronze over seven Paralympic Games, including a gold at the 1996 Atlanta Paralympic Games.

In 2000 he was voted Mexico’s Athlete of the Century. His motto: “There are no barriers for success.” The above portrait and other photographs of people living with disabilities by Atlanta photographer Billy Howard are on display at Emory’s School of Medicine, sponsored by the Journal of Humanities in Rehabilitation.

FROM THE DEAN

A Powerful Connection

When I was 1, my family moved from India to Italy. My Vikas P. Sukhatme, md, s c d father had been appointed direcDean, Emory School of Medicine tor of statistics at the Food and Chief Academic Officer, Emory Agriculture Organization there, a Healthcare branch of the United Nations. My mother was trained as a Montessori teacher.

Rome was a great place to grow up— I often served as tour guide for visiting family and friends who wanted to see the Colosseum or throw a coin in Trevi Fountain.

I learned from everyone and anyone: traditional Italian grandmothers, our small community of fellow Indians, and my Notre Dame International School classmates from around the world. . . Asia, the Middle East, the US. I was inculcated at a young age to consider different points of view, cultural perspectives, and religious beliefs.

To read more about my goals and vision for the Emory School of Medicine, see my Q&A (p. 24).

In this as in every issue of Emory Medicine magazine, we showcase ways our faculty, researchers, and medical teams are making others’ lives better.

Inside you will find compelling patient and clinician stories from the Grady Burn Center (p. 14), Winship Cancer Institute’s new clinical trials unit (p. 27), the Emory and Children’s Cystic Fibrosis Center (p. 30), and the Emory Sleep Center (p. 34).

We must remember that our work is always in the service of humanity.

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Emory Medicine Editor Mary Loftus Art Director Peta Westmaas Director of Photography Jack Kearse Contributing Writers Janet Christenbury, Quinn Eastman, Jennifer Johnson, Martha McKenzie, Catherine Williams, Jill Wu, Kimber Williams.

Production Manager Carol Pinto Advertising Manager Jarrett Epps Web Specialist Wendy Darling Interns Courtney Shin 19C, Kofi Stiles Associate VP, Health Science Communications Vince Dollard

Emory Medicine is published twice a year for School of Medicine alumni, faculty, and staff, as well as patients, donors, and other friends. © Emory University

Emory University is an equal opportunity/equal access/affirmative action employer fully committed to achieving a diverse workforce and complies

with all applicable federal and Georgia state laws, regulations, and executive orders regarding nondiscrimination and affirmative action in its programs

and activities. Emory University does not discriminate on the basis of race, color, religion, ethnic or national origin, gender, genetic information, age,

disability, sexual orientation, gender identity, gender expression, or veteran’s status. Inquiries should be directed to the Office of Equity and Inclusion, 201 Dowman Drive, Administration Bldg, Atlanta, GA 30322. Telephone: 404-727-9867 (V) | 404-712-2049 (TDD).

PHOTO STEVE NOWLAND

BEHIND THE STORY: This friendly fellow, Finn (above),

works as a certified therapy dog with students at Emory’s Counseling and Psychological Services office.

Finn is a littermate of Hakon, the first service dog paired with Grady patient Jalen Richardson (p. 14).

View the magazine and bonus content at emorymedicinemagazine.emory.edu.

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The world we’re living in is becoming more and more fractured, but medicine has an incredible power to heal and connect.

The Emory Brain Health Center and Georgia Public Broadcasting (GPB) are partnering on a news magazine hosted by Emory’s Jaye Watson.

To learn more, go to emry.link/brain.

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PHOTO STEVE NOWLAND

FEATURES

Man on Fire 14

A fiery motorcycle crash burned more than 60 percent of National Guardsman

Strangely, he felt almost no pain—many of the superficial nerve endings that laced his dermis had been incinerated.

In fact, an astonishing amount of his skin was simply gone.”

“

Jalen Richardson’s body. His recovery took more than a year of painful skin grafts and rehabilitation, a dedicated Grady Burn Center care team, a skilled Emory surgeon, and devoted service dogs like Shadow (on cover with Richardson).

Ready Phase One 27

Winship Cancer Institute has expanded and improved its space for patients who volunteer for Phase 1 clinical trials—the first time a new treatment or drug is tested in humans.

Cystic Fibrosis Warriors 30

People with cystic fibrosis didn’t used to make it to adulthood. But thanks to new medications and therapies, those with the genetic disease are living decades longer—a feat that still takes a lot of care and self-discipline.

Dinner with a Doctor: Sleep Solutions 34

A group of insomniacs, somnambulists, and incessant snorers had the chance to ask Nancy Collop, director of the Emory Sleep Center, their most pressing questions.

THE BARE BONES Letters 4

Experts Weigh In 4 Briefs 5

AND MORE

Q&A with School of Medicine Dean Vikas Sukhatme 24

Medical Ethics: Rideshare Dilemma 40

When a rideshare driver repeatedly shows up at the ER with signs of alcohol abuse, does the doctor report him?

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Visit us online at emorymedicinemagazine. emory.edu for bonus content. Send letters to the editor to mary.loftus@emory.edu.

“Living life requires more than just breathing.

It requires loving every minute we have on this earth.”

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Experts Weigh In

Letters

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I recently read “The Better to See You With” (Emory Medicine, Spring 2019) by Sidney Perkowitz. The story takes the reader through the history of medical imaging— from X-ray to ultrasound and everywhere in between—while embedding real-world case studies. Tracing the development and refining of these technologies allowed me a broad understanding of the ongoing act of scientific discovery and innovation: trying out new tools, using them in different ways, learning their potential and limitations, and constantly being open to new discoveries. It feels like a set of lessons on a different level, as well: How can we move from darkness THE BE SEE YOTTER TO to a place of sight that allows us to heal?

U WITH What are the different types of looking that different questions require? How can we act with curiosity and openness to understand the variety of lenses through which we view the world?

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Emily Weyrauch Atlanta

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Our family dinner conversations were always interesting, not least because my dad, Arthur P. Richardson, was at the time dean of the Emory School of Medicine.

As I recall, during those years the CDC became located down the road, a pediatric facility was built as well as the Winship Clinic, and the Emory/Grady connection expanded greatly. In light of current news about the overuse of medicines, I remember even when I was a child, my family used medicines very sparingly, and my dad talked about the dangers of abusing such drugs as penicillin—and thus reducing their longterm efficacy. My dad may also have been the first medical administrator to appoint a female administrator, in 1957, Dean of Students Evangeline Papageorge, whom the students loved. My dad was a very self-effacing man—I remember that once I asked him why he didn’t have a designated parking place, and he replied, “If I have one, everyone will want one!”

Wendy Richardson Oxford, Ohio

I can’t begin to tell you how much your magazine means to me. It is always full of wonderful things happening at EUSOM and around the world. It makes me so proud of my connection, having graduated from the School of Medicine in 1975 and residency there in 1979. I am always reminded of Dean Arthur Richardson’s admonishment at our commencement, “Don’t go out there and practice 1975 medicine for the rest of your life.” Your magazine reminds us once again, of how fast knowledge is growing and how fast medical care is evolving. You are keeping us in the fast lane.

Pamela Cowell 75M Puyallup, Washington

We like to hear from you. Send us your comments, questions, suggestions, and castigations.

Address correspondence to Emory Medicine magazine, 1762 Clifton Road, Suite 1000, Atlanta, GA 30322; call 404-727-0161; or email mary.loftus@emory.edu.

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G INS IDE

When people experience trauma, it doesn’t just impact them in terms of their mental health. It can impact their body as well. We’ve seen that the more trauma someone experiences, the more likely they are to have a pain condition.”

Abigail Lott, licensed clinical psychologist, co-director of the Grady Trauma Project and Emory assistant professor of medicine, elemental.medium.com.

“

Measles may be the canary in the coal mine in terms of identifying a bigger problem with under-immunization.

If this continues to worsen it might mean other diseases are making a comeback.”

Walter Orenstein, Emory professor of infectious diseases, Vox.

“

Women still feel more of a need to provide that nurturing home life. Men are helping more than ever but working women still feel the stress of trying to do it all.”

Gina Price Lundberg, clinical director of the Emory Women’s Heart Center, AJC.

BRAIN-MACHINE INTERFACES, DEEP LEARNING, AND NEURAL MODULATION

How biomedical neuroengineering can make our collective future brighter

What is the big question about the brain right now?

CP: How to fix it. My area of research is

neuroengineering, which focuses on repairing the nervous system in cases of injury or disease. We bring in cutting-edge computational techniques and artificial intelligence to better understand the brain, and use these insights to develop new strategies and therapies to repair the brain.

Eva Dyer and Chethan Pandarinath, both assistant professors in Emory and Georgia Tech’s Coulter Department of Biomedical Engineering, were awarded Sloan Research Fellowships for early career scholars. We spoke with them about the future of brain research, why it’s better to study thousands of neurons at a time, and what neurons and birds have in common.

ED: When we study disease models, we would like to learn signatures of brain disease from data. Because brains are so individual, however, they each produce different measurements. I want to build expressive models that capture this variability. Personalization in health care could end up being critical in the study of brain disease.

Where do you see the field of neuroengineering heading?

CP: The brain is incredibly complex, made up of billions of individual neurons that are intricately connected into powerful networks. Yet we’ve mostly been able to study the activity of one or a handful of neurons at a time. Now, we’re getting tools that will enable us to monitor many thousands of neurons simultaneously, as well as read the massive data sets this creates through artificial intelligence techniques known as “deep learning.” This allows us to uncover relationships we’ve never been able to pull out in the past.

ED: Being able to record and interpret the activity of neural populations “in the wild” will likely contribute to major breakthroughs in our understanding of the brain.

How about your own research?

ED: I am excited about the possibility of

leveraging information about the brain’s architecture to build and inspire the design of the next generation of deep learning architectures.

CP: We already have a rich history of using deep brain stimulation for disorders like Parkinson’s disease, and cochlear implants to restore hearing for people who are deaf.

Now we’re seeing emerging applications of closed-loop brain stimulation to treat epilepsy, depression, psychiatric disorders, and memory.

You’ve compared the behavior of neurons in the brain to the flocking of birds. Tell us more.

CP: When you look at a flock of birds, you see these beautiful patterns pop out, and complex, coordinated behaviors, even though there’s not one leader coordinating the flock’s activities and telling them what to do. You just have a bunch of individuals doing their own thing, but through very basic interactions, the group as a whole does something that’s tightly coordinated. Neurons are very similar! You have a bunch of individual neurons that behave in certain ways, but the fact that they’re all wired up together and interacting with each other results in this coordinated, emergent system that is capable of doing really profound things.

—by Courtney Shin 19C

Winter 2020

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need diagnostic imaging or to be seen by a sports medicine expert.

“That synergy will allow us to offer state-ofthe-art imaging equipment and a more robust complement of physicians than would be present at a typical NFL practice facility,” says Scott Boden, professor and chair of the Department of Orthopaedics, Emory School of Medicine.

The clinic will overlook the Falcons’ practice site. “We are proud to be extending our partnership with Emory Healthcare in bringing this incredible facility to the Falcons campus,” says Rich McKay, Atlanta Falcons president and CEO. “Emory is the leader in innovative technology, and this facility will

Atlanta Falcons/Emory Sports Medicine Clinic Set to Open

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mory Healthcare and the Atlanta Falcons have broken ground on a new musculoskeletal and sports medicine clinic at the IBM Performance Fields, home of the Atlanta Falcons. The Emory Orthopaedics & Spine Center at Flowery Branch, set to open in 2020, will provide a new location for patients, while also being an access point for Falcons who may

be a catalyst not only to help propel sports medicine, but for world-class orthopaedics treatment for the residents of Hall County.”

Also being built on the same site is the Emory Sports Performance and Research Center.

The center will explore the science of injury prevention and recovery, particularly in high school and younger athletes. Emory and the Falcons will join together to offer community programs for high school athletes, parents, coaches, and others to learn about prevention tips and warning signs.

“We know that 50 percent of anterior-cruciate ligament or ACL injuries could be prevented if poor movement patterns or imbalance in an athlete are detected in advance of that injury,” adds Boden. “We plan to study high-risk injuries and ways to prevent those injuries before they occur.”—Janet Christenbury

Your Dog’s Personality? Probably due to selective breeding There are lazy dogs and hyper dogs, dogs that herd and dogs that hunt, dogs that fetch and dogs that jump. Many

of these behaviors are associated with one breed or another.

Researchers have found that the behavioral differences are the result of underlying neural differences. “Humans have bred different lineages of domestic dogs for different tasks such as hunting, herding, guarding, or companionship,” says David Gutman, Emory associate professor of medicine and co-author of the study, published in the September 25 issue of the Journal of Neuroscience.

Gutman and Marc Kent at the University of Georgia College of Veterinary Medicine examined the MRI brain scans of 62 purebred dogs from 33 breeds. Analysis showed that brain variations among breeds were broader than could be attributed to chance. “Neuroanatomical variation is plainly visible across breeds,” the study found. “This variation is distributed nonrandomly across the brain. Variation in these networks is not simply the result of variation in total brain size, total body size, or skull shape.” Results indicated strong, recent selection in individual breeds.

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“Together, these results establish that brain anatomy varies significantly in dogs, likely due to human-applied selection for behavior,” Gutman says. For instance, the dog’s brain network involved in navigation was proportionally larger in sight hunting breeds, while the anatomy of the network involved in vision and smell was larger in dogs bred to help the police and military. n

Profit Motive?

Where patients receive dialysis may influence their timeline for kidney transplants Patients with end-stage kidney disease who re-

ceive dialysis at for-profit dialysis centers are less likely to receive a kidney transplant than patients receiving dialysis at nonprofit dialysis centers, according to researchers at Emory and Kaiser Permanente Center for Research and Evaluation in Georgia.

These results, from a study of the records of more than 1.4 million patients at more than 6,500 dialysis centers, were published in the Journal of the American Medical Association.

“Decades ago, research showed that for-profit dialysis facilities had lower kidney transplantation rates,” says Emory transplant surgeon Rachel Patzer, associate professor in the Department of Surgery and senior author. “We wanted to determine if the association between dialysis facility ownership and transplant access has persisted. In addition, no prior studies had examined whether for-profit facilities also had lower rates of living donor and deceased donor transplantation rates.”

Most patients receive dialysis at for-profit facilities. Rates of transplantation were lower at for-profit versus nonprofit centers, the study found. For example, just over 1 percent of patients at for-profit centers and 3.5 percent of patients at nonprofit centers received a kidney from a living donor, while rates of deceased donor transplants were close to 3 percent and 7.6 percent, respectively. Almost 12 percent of patients at for-profit centers were wait-listed for transplantation, compared with nearly 30 percent of patients at nonprofit independent dialysis facilities.

“Not all patients are candidates for transplant,” Patzer says, “But patients should make sure to have these conversations with their medical providers to understand the risks, benefits, and steps needed to pursue kidney transplantation as a treatment option.” n

Discovery Accelerator Last year, Emory received $685.5 million in health sciences research funding awards. Of that, $440.8 million was in federal research funding awards, led by the National Institutes of Health with $359.2 million.

Stalking Silent Killers Diabetes and hypertension quietly and relentlessly kill more people worldwide than HIV, malaria, and TB combined—particularly in low- and middle-income countries.

About one in three adults worldwide has raised blood pressure and one in 10 has diabetes, according to the World Health Organization.

For more than a decade, the Emory Global Diabetes Research Center has been studying and making strides against these diseases in India, an epicenter of the epidemic. The hope is that lessons learned there can be applied around the globe. Through years of research partnering with key Indian health institutions, the center has developed interventions that successfully manage the diseases in people who have them and reduce the risk in people who don’t. “The science we’ve accumulated gives us strong confidence that these interventions can be delivered effectively and at low cost,” says K. M. Venkat Narayan, director of the center, Emory professor of medicine, and Hubert Chair of Global Health at Rollins. “We’d like to take these programs and scale them up.”

The center’s interventions piggyback off of established systems. Community health workers have long been a crucial part of the Indian health care system, providing basic health education and care in remote areas. In previous studies, the center and its partners armed community health workers with smartphones and an app and trained them to screen for diabetes and hypertension. People who tested positive were referred to clinics and people who tested negative but high risk were educated about lifestyle changes.

In the clinics, the center team trains nurses to act as patient advocates. Physicians are given a tablet-based app linked to the database used by community health workers. “We have developed and tested support technologies that track the patient’s health, update electronic medical records, and provide personalized treatment suggestions to prompt both the patient and the physician,” says Narayan. “We could be on the tipping point that transforms the entire world to act against diabetes and hypertension.”—Martha McKenzie

Winter 2020

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Follow the (Purple) Leader Invasive cancer cells are marked by distinctive mutations.

Adam Marcus and colleagues from Winship Cancer Institute have developed ways to track mutations that are specific to “leader” or “follower” cells.

Specifically, they have identified a leader-specific mutation affecting Arp3, a protein complex that plays a key role in cell motility. “This suggests that this mutation could be involved in driving the invasive behavior of leader cells,” says Marcus.

The researchers took the mutated Arp3 protein from leader cells and forced its production in follower cells. In this image, the magenta cells on the outside are the ones with the mutated Arp3 protein, while the green cells are unmodified.

“This is an important step toward elucidating the biology underlying the leader and follower behaviors within a tumor,” says Marcus.

“As we further dissect the mechanisms that drive cancer cells to become leaders or followers, we can better develop strategies to target this rare yet invasive population.”

The research, published in the Journal of Cell Science, was conducted in collaboration with the lab of Paula Vertino, formerly at Winship and now at University of Rochester. Cancer Biology graduate students Elizabeth Zoeller and Brian Pedro led the work, with sophisticated genomics from Ben Barwick. n

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CONFOCAL MICROSCOPY BY BRIAN PEDRO

THE BARE BONES

Gupta, Houry Elected to NAM

Opioids After Surgery: Give Less, Educate More

Sanjay Gupta and Debra Houry were elected by the National Academy of Medicine (NAM) to join its 2019 class. Gupta is associate chief of neurosurgery at Grady Hospital, associate professor of neurosurgery at Emory, and chief medical correspondent for CNN. He was chosen for his efforts in helping the public understand the causes, impact, and management of medical and public health challenges, and bridging the gap of health care knowledge by redefining public discourse.

Houry is adjunct associate professor in emergency medicine at Emory and director of the CDC’s National Center for Injury Control and Prevention.

She was chosen for leading the nation’s largest public health institution focused on the prevention of injuries, including overdose, suicide, and violence, and highlighting the multiple harms associated with the opioid epidemic. n

Giving patients fewer opioid pills after surgery and educating them about baseline pain relief options may help lower the chances of patients developing postoperative narcotic addiction, found researchers at Emory School of Medicine.

The results, based on surveying patients who were undergoing ACL

reconstruction surgery, were published in the Journal of the American Medical Association.

Emory chief of sports medicine and professor of orthopaedics John Xerogeanes, a coauthor of the study, believes there is a significant psychological component to the findings.

“It appears that explaining to patients before the surgery that they should take narcotic pain medicine only if their pain is intolerable makes a difference,” he says. “Then after the procedure, when you recommend they take fewer narcotics, they do.”

The average age of patients in the study was around 20 years. “Minimizing the exposure of adolescents and youth to opiates and left-over pain medication after surgery is a step in the right direction given the current opioid epidemic,” Xerogeanes says.

Based on the findings, the researchers suggest reducing the typical opioid dose for postoperative patients by at least half. “We used to give 50 opiate tablets after surgery,” he says. “Now we only give 20.”

Another step, he says, is to examine alternatives such as non-narcotic medications for postoperative care. n ADVERTISEMENT

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RESEARCH

ROUNDUP

Decline in Heart Health Begins Early for Teen Girls

What happens between the ages of 9 and 19 to hurt girls’ hearts?

More than you would think. Depression, tobacco use, obesity, and lack of exercise can all take a toll on teenage hearts.

Heart health deteriorates as early as adolescence, with black girls experiencing greater rates of decline than white girls, according to preliminary research presented at the American Heart Association’s (AHA) Scientific Sessions 2019.

“About 20 percent of the girls in this study entered young adulthood with low cardiovascuAmong the researchers’ lar health, defined as less than half of the total findings: possible ideal cardiovascular health score of seven key health factors,” says lead study author n H eart health declined between ages 9 and 19, Holly Gooding, assistant professor of pediatrics at Emory and a member of the AHA’s Cardiovasparticularly among black girls and girls cular Disease & Stroke in Women and Special from families with lower education and Populations Committee. “We should work income levels. to ensure all teens have access to and choose healthy foods, stay physically active, and avoid n M enstruating before age 12 was associated smoking.” with reduced heart health.

Obesity and physical inactivity are two of the biggest hurdles facing youth today, with n D epression, which is known to affect diet, nearly 24 million children ages 2 to 19 overphysical activity levels, and tobacco use, was weight or obese, and 15 percent of adolescents not getting enough exercise—a problem that is also associated with reduced heart health. more common among girls than boys. n T een pregnancy was linked to reduced heart Identifying which teen girls may be at greater risk for heart disease as they progress into health. adulthood may help improve heart health outcomes for everyone, researchers said. Using data from the National Growth and Health Study funded by the National Heart, Lung, and Blood Institute, researchers followed roughly 1,200 black girls and 1,100 white girls who were enrolled for a decade.

Girls were placed into one of three categories—ideal, intermediate, or poor—for six of the seven primary American Heart Association cardiovascular health metrics called Life’s Simple 7: diet, exercise (at least 60 minutes per day for teens), abstaining from tobacco, a healthy body mass index, and healthy blood pressure and cholesterol levels.

Researchers also noted when girls began menstruating and accounted for teen pregnancy and depression in the analysis. n

FOOTBALL RISK: Weight gain and high blood pressure in college football players leads to negative changes in their heart’s structure and function that could lead to heart attacks or stroke, according to a study by Emory researchers. Monitoring and early intervention are needed for these otherwise healthy young athletes, they found. Results were published Oct. 16 in JAMA Cardiology.

HEART AND BRAIN: By studying twins,

Emory researchers found that good heart health is associated with good brain health. Because this was observed in both identical and fraternal twins, familial factors such as early environment, socioeconomic status and education, and parenting probably affect later heart and brain health. Results were published Oct. 1 in the Journal of Alzheimer’s Disease.

DEPRESSION RELIEF: Patients suffering

from severe, treatment-resistant depression can experience long-term relief through deep brain stimulation, according to research conducted at Emory.

Stimulation of the subcallosal cingulate provides a robust, sustained antidepressant effect in the most severely depressed patients, researchers found.

Results were published online Oct. 4 in the American Journal of Psychiatry.

TREADMILL TEST: Information gained from signs of cardiac stress in the blood in response to exercise may be more useful in determining a heart patient’s risk of future coronary events than the treadmill test itself, found Emory researchers. Results were published Dec. 4 in JAMA Cardiology.

Winter 2020

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Immune Response: How Max Cooper may have saved your life A half-century ago, immunologist Max Cooper made a historic discovery that forever changed our understanding of the human immune system.

Cooper’s breakthrough—that the body has two separate kinds of lymphocytes, or white blood cells, to defend itself— opened the door to a new world of treatments and vaccines.

For his joint work on this discovery that has helped to save countless lives, Cooper, a professor of pathology and laboratory medicine at Emory’s School of Medicine, is a recipient of the 2019 Albert Lasker Basic Medical Research Award, the most prestigious biomedical research award in the US. Cooper, a member of the Emory Vaccine Center and a Georgia Research Alliance Eminent Scholar, is being honored along with Jacques Miller from the Walter and Eliza Hall Institute of Medical Research. “The 2019 Albert Lasker Basic Medical Research Award honors two scientists for discoveries that have launched the course of modern immunology,” read the Lasker Awards website.

Cooper and Miller identified and defined the function of B and T cells, a monumental achievement that uncovered the organizing principle of the adaptive immune system. The adaptive immune system “remembers” specific invader organisms (known as pathogens) or other abnormal cells in the body that it has encountered previously, and eliminates them.

His landmark discoveries provided a framework for understanding how white blood cells normally combat infection — and how they can undergo abnormal development to cause immune deficiencies, leukemia, lymphomas, and autoimmune diseases.

Cooper’s work also contributed to med—Max Cooper ical knowledge that enabled transplants of bone marrow stem cells to treat blood cell cancers.

“Max’s contributions to the field of immunology are enormous and transformative,” says Rafi Ahmed, director of the Emory Vaccine Center. “He continues to conduct groundbreaking research.” n

“I cannot imagine a field of research that is more exciting or one that offers better opportunity to explore the balance of life on our planet.

Perhaps this view explains why I am hooked for life.”

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Racing the Alzheimer’s Wave Drug development for Alzheimer’s disease is expensive and risky. Still, it is a challenge that must be confronted

due to the rapid aging of the population and the lack of effective therapies and medications.

To that end, the National Institute on Aging is awarding approximately $37 million over five years to a team of international researchers, led by Emory, to help accelerate the development of promising new therapies that will effectively treat or prevent Alzheimer’s. The grant is part of a larger $73 million program to establish the Alzheimer’s Centers for the Discovery of New Medicines, designed to diversify and reinvigorate the Alzheimer’s drug development pipeline.

“Given the widespread aging of the US baby boomer population, and current unsuccessful treatment approaches focused on amyloid and select other therapeutic targets, this substantial investment answers a critical and time-sensitive need,” says Allan Levey, director of the Goizueta Alzheimer’s Disease Research Center at Emory.

The goal? A diverse portfolio of well-characterized new therapeutic and diagnostic targets for Alzheimer’s. n

Mumps Vaccine as a Child?

You May Not Be Protected Immunity against mumps virus appears insufficient in some young adults who were vaccinated in childhood, shows research from Emory Vaccine Center and the CDC.

In the past 15 years, several mumps outbreaks have occurred among college students and sports teams, and in close-knit communities across the US. Two possible contributing factors include waning vaccine-induced immunity and differences between the current strain of mumps and the vaccine strain—part of the standard measles, mumps, and rubella (MMR) childhood vaccine. “Overall, the MMR vaccine has been great, with a 99 percent reduction in measles, mumps, and rubella disease,” says Sri Edupuganti, associate professor of infectious diseases at Emory and medical director of the Hope Clinic. “What we’re seeing now is that a few people were not making a strong immune response to begin with, and the circulating Swollen strain has drifted away from the parotid gland strain in the vaccine.” n

Philanthropy in Action

A Giving Heart

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his “mechanical heart” recognizes Emory’s partnership with the Genuine Parts Company and honors the role its employees’ benefits fund has played in supporting the Carlyle Fraser Heart Center at Emory University Hospital Midtown.

“As a result of their giving, the center has become one of the nation’s top clinics for heart and vascular care,” says Jonathan Lewin, executive vice president for health affairs at Emory.

Each element of the illustration is done with purpose: The blue and yellow are shades of the colors seen in the Genuine Parts logo; the red suggests the human heart; and the initials of three people important to Genuine Parts Company history and the Carlyle Fraser Heart Center are hidden within the illustration.

The “Real. Giving. Heart.” illustration was done by Satyen Tripathi, a medical illustrator for the Department of Surgery at Emory, and conceived and art directed by Anne Boston, a graphic designer in Emory Advancement Communications. The rendering won a 2019 award from the Association of Medical Illustrators. n

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SURVIVING THE UNSURVIVABLE

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After a horrific accident, Jalen Richardson reclaimed his life with the help of the Grady Burn Center, a service dog named Shadow, and his National Guard unit

MAN ON FIRE BY

Kimber Williams

Winter 2020

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B

Sept. 4, 2016 By all predictions,

Atlanta’s long Labor Day weekend was going to be a scorcher, with temperatures soaring toward the 90s and air that hung swampy and still, offering little promise of relief.

To Jalen Richardson, it didn’t matter. He knew how to create his own breeze.

“Two bikes on fire with a rider melted to the asphalt? That doesn’t happen every day.”

—first responder Travis Owens

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Even as he left his shift at UPS that warm Sunday afternoon, Richardson was mentally mapping his ride—a quick cruise downtown to grab a burger at The Varsity before rolling east toward Atlanta’s Edgewood neighborhood.

Pulling on protective gloves, his helmet and a heavy, padded jacket, Richardson knew his first stop would be to meet up with friends at the QuikTrip near Interstate 20 and Panola Road in Lithonia, a popular spot with local riders.

Richardson was 18 when he bought his first motorcycle. It was small, salvaged from a local flea market, but he loved everything about it— the ease, the power, the way a bike could mirror your every move. It was man and machine working as one, a heart-pounding sense of freedom that, short of sprouting wings, was the closest he could come to flying.

The following year, he graduated to a bigger, faster ride. Classified as a super sport bike, the flashy blue-and-white 2003 Suzuki GSX was noted for its sharp, precise handling. Weighing around 350 pounds, it was a powerful machine—sleek, agile, and quick.

It had taken time to find his riding group, a handful of guys in their 20s who cruised around metro Atlanta together two, three times a week.

As they fueled up that evening, a larger pack of bikers rumbled into the gas station. Over casual banter, they decided to tag along with Richardson’s crew. Now more than a dozen bikes strong, the riders merged onto Highway I-20 heading west. Richardson found his place sandwiched comfortably between the two groups, his friends pulling ahead, the others trailing just behind.

No one knows where the Kawasaki EX-250 came from—an outsider, wedging his way into the pack. Traffic was slowing near the Wesley Chapel Road exit when the Kawasaki suddenly darted in just behind Richardson, striking his back tire.

The shuddering impact was abrupt and violent, instantly toppling the heavy Suzuki and Richardson with it. Hitting the asphalt hard, his right hand reflexively squeezed the throttle, sending the engine screaming and wheels spinning even faster. Body and bike skidded down the highway in a fiery shower of sparks.

For Richardson, a Georgia Army National Guardsman in top physical condition, it was a surreal moment, played out simultaneously at high-speed and in slow-motion. Driven by a monster surge of adrenaline, he fought to free the left side of his body, now pinned under the full

SURVIVING THE UNSURVIVABLE

Jalen Richardson (left), a Georgia Army National Guardsman who had been riding since he was 18, stands beside his Suzuki GSX. Travis Owens, Jeff Daniels, and Michael Gales (l-r, below) were among the first responders at the scene of the crash and helped stabilize and transport Richardson to Grady Burn Center.

ss

weight of his bike. He didn’t know his gas tank was punctured or notice the long, oily streak of fuel smeared behind him, a dark, combustible stain on the pavement.

Hearing a boom, his friends turned back to gasp at the resulting explosion—a flaming mushroom cloud that grazed traffic signs 20 feet above the highway.

Somewhere within the inferno was Richardson.

Blown from his bike, he felt himself falling hard against the pavement. There was no awareness of being engulfed by fire, only the roar of a hard, driving wind. Within moments, Richardson was the epicenter of a sudden public clamor, as panicky motorists doused him with bottles of water and Big Gulps, tossing a blanket over his smoldering riding gear.

Hearing low, guttural groans—like an old man trying to get out of bed, he thought—Richardson suddenly realized the sounds were coming from him.

Against the screams of bystanders Richardson tried rising to his hands and knees, unable to comprehend how badly he was hurt. The flames had seared his gasoline-soaked left arm so quickly, so deeply, it was already cutting off

PHOTOS COURTESY OF JALEN RICHARDSON

blood to his muscles, leaving his fingers numb and tingling.

Softened by the industrial-strength heat, the top of his motorcycle helmet was melting, collapsing like a soufflé. Strangely, he felt almost no pain—many of the superficial nerve endings that laced his dermis had been incinerated.

In fact, an astonishing amount of his skin was simply gone.

‘Melted to the asphalt’

The call came to DeKalb Fire Rescue Station 21 shortly after 8 p.m. A collision had left two motorcycles ablaze on Highway I-20 with reports of multiple injuries.

Captain Jeff Daniels and two members of his company—firefighter Michael Gales and driver-operator Travis Owens—were wrapping up a nearby call on Fairington Road when they spotted rising plumes of thick black smoke.

They arrived to find twin fireballs—two motorcycles, still burning. Grabbing hoses, Daniels and Gales quickly extinguished the flames while Owens, an emergency medical technician, assessed injuries. There was a woman who had broken her arm falling from her motorcycle, Richardson, and the rider who had struck him.

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PHOTOS COURTESY OF DEKALB FIRE & RESCUE

As other units arrived, Owens focused on Richardson, who was clearly in the worst shape. Preparing him for transport, he discovered that Richardson’s nylon-andmesh riding jacket had melted and hardened, affixing him like a barnacle to the highway.

Using trauma shears, first responders carefully cut the jacket from the pavement, leaving a sooty crime-scene outline of Richardson’s body.

“I’ve worked a lot of motorcycle wrecks out of Lithonia,” Owens says. “Two bikes on fire with a rider melted to the asphalt?

That doesn’t happen every day.”

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As the body’s largest, most visible organ, skin offers a first line of defense—a protective barrier sealing precious fluids in and keeping harmful microbes out. With all the skin Richardson was missing, Owens knew his condition was critical.

In the ambulance, Richardson’s vitals were hard to assess, there was so much damage. Owens, attempting to administer an IV, couldn’t access veins via his neck or arms. Instead, he drilled into a shin bone, inserting an intraosseous IV to pump fluids directly into Richardson’s bone marrow—a non-collapsible point of entry.

Within minutes, the ambulance was rolling, with Gales—a medically trained first responder—still aboard. “I just wanted to stay with the patient,” Gales recalls.

The Ultimate Trauma Following early evening rounds, Emory surgeon Juvonda Hodge had just left the Grady Memorial Hospital Burn Center, heading home to chill out, when a call came that would send her scrambling back to work.

Paramedics were reporting a 20-year-

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old patient with flame-related burns en route to Grady Hospital’s Marcus Trauma Center, and Hodge was still on call.

She rushed back to the hospital, her thoughts racing ahead. Burns often appear by seasons—space heaters in the winter, fireworks in the summer, campfires in the fall.

From boiling water to trash fires, thermal (direct heat) burns happen year-round and are the most common injuries treated at the center.

Every burn is classified by the degree of injury (how deeply the damage extends) and the percentage of total body surface area (TBSA) affected.

In Richardson’s case, paramedics warned, the damage looked extensive.

Estimating the TBSA helps predict not only a patient’s risks, but how much healthy skin remains—a crucial resource down the road, says Hodge, an Emory assistant professor of surgery, trauma, and surgical/critical care at Emory School of Medicine and assistant medical director at the Grady Burn Center.

Richardson was presenting as a “big burn,” with third-degree burns (damage to all three layers of skin) covering 60 to 70 percent of his body—a TBSA seen in only a small fraction of the 700 new patients admitted to the Grady Burn Center each year.

By the time the ambulance arrived, Hodge and her team were waiting. Cutting away Richardson’s charred clothing revealed a lean, healthy young man who was marveling over his melted helmet, although he would have no memory of that later.

“Tell me what happened,” she urged.

“Can you move your arm? Your hand? Can you feel me?”

After first evaluating Richardson for trauma—amazingly, there were no broken bones, no critical head or organ injuries—her focus immediately shifted to his damaged skin. A sprawling pattern of burns meandered across his body, etched in random streaks and broad swaths.

Much of his torso and back, his face, both arms and his thighs were already an angry, peeling patchwork of pink, tan, and brown.

But it was his left arm that quickly commanded Hodge’s attention. Typically, the deeper the burn, the drier a wound appears. From Richardson’s left bicep to his fingertips, Hodge could see damage into the muscle, his flesh pearly, tight

and hard—literally cooked. When he couldn’t flex his fingers, Hodge grew even more concerned.

Richardson was intubated, given IV fluids, and eased into a medically induced coma to manage his pain. Once stabilized, he was transferred to the burn center’s intensive care unit for cleaning and debridement—the painstaking removal of debris and dead tissue—and a closer assessment of his wounds.

When a deep, full-thickness burn encircles a limb, damaged skin loses elasticity, stiffening like a rigid, leathery cast. So Hodge quickly performed an escharotomy—a series of small incisions resembling little tiger stripes—along his arms and legs to relieve pressure, improve circulation, and allow Richardson’s underlying soft tissues to rehydrate and expand, preventing further damage.

When she stepped out to speak with his family, Hodge chose her words carefully.

Burns are the ultimate trauma, stressing every system of a patient’s body. The road to

Clockwise, from top: Grady Burn Center treats about 3,500 patients a year; Richardson in early recovery; Emory doctors Walter Ingram and Juvonda Hodge (above).

SURVIVING THE UNSURVIVABLE FRONT

recovery is long, painful, and never straight, she told them, a physical and emotional journey navigated in halting, hard-fought stages. From pneumonia to stubborn infections and potential graft rejection, there is no predicting what complications might arise.

“As long as we keep moving forward, I am going to push forward,” she promised. “If there is a point in time I cannot move forward, I will tell you.”

It was hard to hear. Impossible to imagine this athletic young man—once a scrappy wrestler and football player at Southwest DeKalb High School who enjoyed running anywhere, everywhere—suddenly stilled.

Marathon of Endurance

Burn care is a carefully calibrated exercise in rebuilding what is lost— assessing damage, removing dead tissue, and growing or transplanting new skin to replace it.

An excruciating process, it demands time, patience, and fortitude from the patient and the care team. Deep, extensive burns can require months of treatment and rehabilitation; a full recovery can take years. “The pain is severe and sustained, probably one of the worst types of pain we can go through.

And recovery is a marathon, not a sprint,” says Walter Ingram, associate professor of surgery at the Emory School of Medicine and trauma/ surgical critical care at Grady.

Ingram, who left a career as a NASA aerospace engineer to pursue medicine, completed his general surgery residency and a trauma/ burn fellowship at Emory. In 1992, the year his fellowship concluded, he was named medical director of the Grady Burn Center, which has

BACK

Richardson had thirddegree burns covering 60 to 70 percent of his body, as depicted on the Lund and Browder chart (above) used by the Grady Burn Center— a percentage seen in only a small fraction of patients admitted.

ILLUSTRATION BY MICHAEL KONOMOS

nearly doubled in size under his leadership.

He now leads the only comprehensive burn center in Atlanta, one of the largest and most highly rated in the country. The center’s medical staff treats some 3,500 adult and pediatric burn patients each year, and teaches the next generation of healers.

Ingram knows the legacy of burns can last a lifetime. It’s not unusual to treat someone as a child and see them return 20 years later with new health issues—skin grafts stretched from weight gain, scars that contract.

Within that long arc of care, from emergency room visits through years of reconstruction, Ingram finds both focus and fulfillment.

In Richardson, Ingram saw three advantages: he was young, fit, and healthy.

Patches where his skin was missing were cleaned and covered with Integra, a clear biofilm made from cow-tendon collagen, shark cartilage, and silicon that serves as a temporary bandage, guarding against infection and restricting heat and moisture loss. An outer layer shields the wound; an inner layer provides a porous scaffolding to encourage skin cell regeneration.

“Artificial skin offers a template,” Ingram says. “Cells will grow into the template to construct a new dermis, then you can come back and replace it with a thin layer of epidermis.”

Without skin, burn patients lose fluid at astronomical rates. So Richardson was inundated with fluids, continually monitored for small changes that could foreshadow bigger problems.

Hodge also kept a wary eye on Richardson’s left arm. “We try at all costs to save a limb, especially where a loss could be life-altering,” she says.

But dead tissue amplifies the risk of infection. A little over two weeks after the accident, Hodge determined that his forearm was not salvageable. Burned to the bone, there was simply no functional blood supply; it would need to be amputated. With Richardson sedated, she asked his family for consent. When he awoke months later, she would tell him, “We were trying to save your life. We just couldn’t save that part of it.”

Next, the focus turned to skin grafts, removing healthy tissue from a donor site—on Richardson’s own body—to replace missing skin, a progression managed in careful stages over weeks and months. With half of one arm gone and extensive damage, most of the grafts would

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Skin 101

Our largest, heaviest organ, skin serves three critical roles: protection, regulation, and sensation. A burn wound affects each of those functions.

•C onsists of three primary layers: the epidermis, a flexible, protective outer layer–the deepest strata produces pigment, which controls skin color; the dermis, a tough, elastic middle layer that cradles sensory nerve endings, hair follicles and sweat glands and helps regulate body temperature; and the hypodermis, the deepest fatty layer, which helps insulate, cushion, and anchor internal organs.

• S erves as our central sensory organ for touch, pressure, temperature, and pain.

• P lays a key role in metabolism, including the synthesis of vitamin D from sunlight.

•O ffers a waterproof barrier to help restrict loss of fluids.

•C ommunicates with our immune system to actively help fight infection.

• P ossesses the ability to produce and release hormones.

•P rovides protection from harmful UV light.

EPIDERMIS

DERMIS HYPODERMIS

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have to come from his buttocks and legs.

To maximize coverage, small, thin pieces of Richardson’s healthy skin were removed, then meshed—fed like a sheet of paper through a machine that perforated it with tiny, uniform holes. The result? A grid-like pattern that allows a piece of skin to expand, stretching to cover a much larger area.

Once in place, the expanded graft offers a latticework to support new skin growth, sometimes leaving a net-like texture as it heals. Within days, a successful graft develops blood vessels, connecting to surrounding tissue. Using a patient’s own skin lowers the chance of rejection. With a limited supply of healthy skin, Hodge sometimes had to remove grafts, let the donor site heal, and return later for yet another graft.

Essentially, Richardson became his own skin farm. Only the burns on his face and right hand would heal on their own.

Replacing skin can seem like a raw, bloody business, as surgeons create a new wound to heal another. But among the Grady Burn Center team, Hodge’s grafts are admired for their precision and artistry. “She’s so graceful we call her ‘The Ballerina of Burns,’ ” says Nicholas Ringfield, a member of the team of nurses who cared for Richardson. “Burns aren’t pretty, but her suture lines are like brush strokes, just immaculate.”

Slowly, Richardson was pieced back together, sedated throughout the nearly three-month grafting process—about 14 surgeries, all told.

Meanwhile, his care team changed dressings and attended to wound care, monitored vital signs, checked for infection, and addressed his soaring nutritional needs. Growing new skin creates huge metabolic demands, requiring a surge of calories. “People with a big burn don’t leave here fat,” Hodge says. “Without good nutrition, muscle can start breaking down, which can leave them weaker and further compromised, launching a dangerous cycle.”

Through it all, his family waited, wondering what version of Jalen Richardson would return to them.

Facing the Big Unknown The last thing Richardson remembers from the accident was the wail of an approaching ambulance. When he awoke, it was November.

As he was eased out of sedation, Richard-

son absorbed new sensations: tubes and gauze dressings; an inflatable burn recovery bed; waves of naked, aching pain. Engulfed in bandages, he felt more like a mummy than a man.

Told what had happened, he could only listen silently. “With a tube in my throat, I couldn’t talk,” he recalls. “I just had to lay there. It was almost like being a sculpture. People would look at me like I was a painting in a museum.”

It took him two weeks to realize his left arm was missing from the elbow down.

In December, Richardson got his cell phone back. Doctors were planning to remove bandages from one of his legs, and his mother had urged him to document the progress. Turning on his camera phone, he discovered it had been left in selfie mode. Staring back at him was a face he didn’t recognize, a crazy quilt of spattered pigment.

“Pretty much everything was 50 shades of pink and brown,” he says. “It was tough to see. I knew it was going to be hard to live with.”

His once-chiseled 170-pound frame had withered to 113 pounds, his body a tender landscape of healing grafts. Before the accident, Richardson was a wheeled vehicle mechanic with the Georgia Army National Guard, taking health and fitness classes at Clayton State University, and posting workout tips on YouTube.

Now he was too weak to roll onto his side, much less stand and walk.

Healing would take time. His days narrowed to a painful cycle of wound care: removing bandages, cleaning and redressing grafts. “It can bring you down,” he admits. “All you are thinking about is going through this pain every single day with no relief in sight.”

In time, his caregivers began to see sparks of personality. Even while intubated, Richardson would scribble funny quips on paper to coax a smile. Within him, a light seemed to be flickering back on.

Hodge was optimistic. Aside from his arm, Richardson was presenting a textbook recovery.

And though he faced a long rehabilitative road, he was making great progress.

Plans were made to release him shortly before Christmas, a departure typically marked by balloons and cheering. Yet for Hodge, it’s also a bittersweet moment. “You know that you’ve done the best you can do, and that the rest is up

SURVIVING THE UNSURVIVABLE

to them,” she says. “It’s like, ‘I’ve gotten you to the fourth quarter, but you have to finish.’”

“That’s always the big unknown,” she adds.

Burn Center 2.0

After just a few weeks, Richardson

was back.

Physically, he was decompensating—malnourished, still unable to stand. Some of his wounds were breaking down, a few donor sites opening back up. Returning to the hospital felt like a setback, leaving him depressed and disengaged, as if giving up.

His care team diagnosed a “failure to thrive.” Though Richardson insisted he was “eating everybody out of house and home,” his nutritional intake just couldn’t keep pace with his soaring metabolic needs.

Hodge was stunned; Richardson had shown so much promise.

“For a burn surgeon, to go back and close wounds that you created is disheartening,” she admits. “My first thought was ‘What went wrong? What can we do to support him? How are we going to bring him back?’ ” “For patients who are here a long time, it’s hard,” Hodge acknowledges. “Progress is slower, and it’s an emotional journey. It was a matter of ‘How can I help this kid realize he’s strong enough to get through this?’ ” Every patient defines their own recovery, says Ingram, who chose burn care in part because of the lifelong relationships it offers with his patients. Along the healing continuum, it’s not uncommon to see depression and frustration, he says, especially in young people.

So they started over: Repairs and daily wound care; scar management; nutrition; pain control and rehab. “Burn care demands a very labor-intensive, cohesive team approach,” Ingram says.

This time, Richardson was different. He didn’t want his blinds open or the television on. The pain made him feisty. Some days, he refused to shower, didn’t want his sheets changed, resisted therapy. He begged to be sedated again, to sleep through the pain.

It was, he acknowledges, the darkest chapter of his journey.

Wound care that should have taken under an

hour could drag on all day. To Richardson, it felt like reliving the accident all over again. “They see progress, but I was just seeing these big bloody wounds, every day,” he says. “All I could think about was day after day of more wound care. I was giving up on myself.”

Once, while Ringfield was redressing Richardson’s wounds, he was startled to hear a strange voice on speaker phone: “Hello, 911, are you safe?”

Looking up, he realized that Richardson was calling the police.

It was a first, but the nurse understood. “Here’s a 20-year-old, just coming into himself, with all decision-making capacity stripped away,” he says. “With wound care, there can be anguish, depression, and anxiety. We step out of the room and patients are left with their thoughts. Why me? Who will love me? Will I look the same? Will I go back to work? All the KüblerRoss stages of grief are there.”

That’s when Hodge stepped in. Some days, after working a full shift she would stop by to change Richardson’s bandages herself. “Every patient is different, with different needs,” Ringfield reflects. “She brings what I call individualized compassion.”

At 5’11”, Hodge is a formidable presence: strong, capable, and direct. Working with Richardson became a daily battle of wills. But she could be stubborn, too. “God told me to keep pushing,” she says. “Some days I would have to shut the door and say, ‘Jalen, this needs to happen. It’s going to happen…’ ” Richardson came to see it as tough love, a firm push forward. “She would come in and give me that look,” he laughs. “She would not let me give up on myself.”

In time, he was calling her “Mama Hodge.”

It took him two weeks to realize his left arm was missing from the elbow down.

Canine Connection

For weeks, Richardson seemed at a plateau—not getting worse, but not improving. Until one day, a dog waddled into his room.

Peaches was a low-slung Basset hound with droopy ears and a two-toned face, among the first certified therapy dogs to visit patients in the burn center through a program that promotes the therapeutic benefits of animals.

Richardson (top) took selfies charting his skin-grafting progress and recovery.

Shadow, his current service dog, (above) is his constant companion, running with him and going to select National Guard deployments. s s PHOTOS COURTESY OF JALEN RICHARDSON

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“She was a mood booster, always genuinely excited to see me,” he says. “You can’t fake that. A dog doesn’t fake emotions.”

Soon, Peaches was joined by others: Honey Duke, a yellow mixed-breed retriever, and Mocha, a chocolate lab. It was the first time Richardson’s nurses had seen him smile in months.

He began to request them, welcoming the distraction.

His care team noticed: If visiting dogs could do that, how would he progress with his own service dog? That’s when they consulted Kimberly Brenowitz, founder of Animals Deserve Better/Paws for Life, a Marietta-based nonprofit that rescues and

Visits from therapy dogs like Peaches (above right) were mood boosters. “She was always genuinely excited to see me,” Richardson says.

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trains service, assistance, and therapy dogs.

On her first visit, Brenowitz arrived with a therapy dog to discover that Richardson hadn’t walked in seven months. “The only place the dog could actually greet him was the big toe of his right foot—everything else was covered in gauze,” she says. “At the time, they didn’t know if he would walk again.”

With his permission, she began searching for a big, sturdy dog that could pull for him, maybe help pick things up. One day, she showed him a photo of a young Native American Indian Dog, a breed noted for strength and intelligence. “It was love at first sight,” she says.

With support from the Semper Fi Fund, a nonprofit that aids American service members and their families, Brenowitz began training Hakon. (His littermate, Finn, is a therapy dog with Emory’s Counseling and Psychological Services program.)

Initially, Hodge was cautious. Dogs bring responsibility, and with all Richardson had been through, she didn’t want to set him up for failure.

Still, it was worth a try. “Sometimes, you just want to feel normal,” Hodge says. “A dog offers unconditional acceptance.”

A Long Road Back

In time, Richardson and Hakon became inseparable, partners in recovery. While healing, skin grafts can contract, restricting movement. At first, Richardson couldn’t even straighten his torso to sit in a wheelchair, so that became a goal. Next, he began extending his legs in physical therapy, reaching to touch Hakon’s soft, shaggy coat with his toes—small, slow movements that left him sore and exhausted.

Sometimes, the dog would sniff the bandages where Richardson’s forearm had been. “When I was in pain, it was like he could sense it and would be closer to me,” he says.

His therapists tied a leash to the left side of

Richardson’s chair, allowing 108-pound Hakon to pull him down the hallway while Richardson pushed a wheel with his right hand—the most movement he’d known in months.

As a kid, Richardson loved to run, sometimes racing his mother’s car to the grocery store.

Now, just walking was a distant goal. “Walking was tough,” Richardson says. “It brought a lot of pain—something you once did so naturally, now you have to re-strengthen your body and learn all over again.”

A missing forearm ruled out crutches and walkers. Instead, Richardson would bend over the back of a rolling chair, leaning on his right arm and anchoring the stub of his left elbow, slowly sliding forward, one step at a time. Each success left him wanting more. “There was no way I felt I could do this dog justice sitting in a chair,” he says. “All the dogs I’ve ever had wanted to run and play. I knew that if I learned how to walk again, I was going to run again.”

Once, he had refused physical therapy; now, he was begging for bigger challenges.

After 14 months in the Grady Burn Center, Richardson was released to a rehabilitation facility in Newnan, Georgia.

As he left the hospital, blaring across the intercom that normally paged doctors was “Eye of the Tiger,” the theme song from Rocky III. At the rehab center, a physical therapist asked about his goals. “I told her I wanted to walk out of there,” he says. “She said in the amount of time we had it would be a stretch, but every day I gave it my all, and we got close.”

Once home, Richardson ordered his own rolling chair. Soon, he was walking. “Every step I took, Hakon was there to take a step next to me,” he says.

The Final Test

Richardson yearned to return to his unit—Charlie Company 151, part of the 78th Aviation Troop Command, the aviation arm of the Georgia National Guard, which had supported him throughout his long recovery.

During company drills inside an aircraft hangar at Dobbins Air Reserve Base “they would literally be pushing me in a wheelchair,” he says.

But a return to full duty meant Richardson would have to pass a standard physical fitness test.

Balancing on his prosthetic arm, Richardson could do pushups, and sit-ups were no problem.

SOLDIER OF THE YEAR

But the test included a timed two-mile run—eight long laps around a track. Once, it would have been easy. Now, simply finishing would be a victory.

In April 2018, Richardson decided to give it a shot, his first full-out attempt at running in two years. As he raced against the clock, each stride tugged at his grafts, bringing sharp pains. “My legs didn’t work like they were supposed to, my skin was all contracted,” he says. “I was doing a bunch of waddling, a bunch of crying. But I got it done.” His unit was stunned: Richardson completed the two-mile run in 17 minutes and 30 seconds, about a minute over the maximum time allowed. Weeks later, he would be back, clearing the required time with room to spare.

As his workouts progressed, Brenowitz, the dog trainer, could see big, mellow Hakon struggling. Could the dog be holding him back? “As much as you love Hakon, he might not be right for you,” she told him. “He’s not built to go where you need to go. You need a dog who can give you a run for your money.”

Enter Shadow, a headstrong, high-energy Alaskan malamute. “He was the cockiest, most independent, pain-in-the-butt puppy I’ve ever met, and I thought, ‘Jalen, you’ve met your match,’ ” she laughs. “He became the shadow that followed him everywhere.”

Soon, Richardson was sprinting around

s

Richardson is a flight operations specialist with the Georgia National Guard and in September was named the 78th Aviation Troop Command’s “Soldier of the Year.”

Stone Mountain, Shadow by his side. Since, he’s been on three National Guard deployments.

Last summer, Shadow went with him, wearing a red vest affixed with “Battle Ready” and “Working Dog, Do Not Pet” patches. Richardson continues to train hard with friends, who challenge each other. That two-mile run? He now holds the fastest time in his unit.

Skin That Tells A Story Burn care is more than replacing skin; it’s also about healing something even deeper.

Sometimes patients get well and you don’t know how, says Hodge. Sometimes, you learn the most from your setbacks. Sometimes, the struggle is your greatest teacher, revealing a new way forward. And some patients, she says, you never forget. For the Ballerina of Burns, that’s what keeps her fingers dancing.

After a year-long stay in the burn center, Jalen came to see his care team as extended family. But lately, his visits have grown less frequent for the best possible reason—an active life gets in the way.

At 24, Richardson now owns his first house, with a room dedicated to his reptile collection: three boas, a tortoise, and a five-foot-long Nile monitor lizard, at last count. Regrowing his own skin and the pebbled texture of his grafts makes him “a human version of a reptile,” he jokes.

s

PHOTOS BY STEVE NOWLAND

Amid the trophies and commendations on his fireplace mantle rests his partially incinerated helmet—a reminder, he shrugs.

Not long ago, he had a motorcycle customized to operate one-handed, to prove he could ride again.

Then he sold it. For now, he’ll stick with four-wheelers.

To celebrate his recovery, Richardson tried getting a tattoo on his right arm—a phoenix rising from the ashes. But the ink disappeared into his grafts. In the end, it didn’t matter.

“My skin is a tattoo in itself,” he’s decided.

“My scars tell a story of their own.” n

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Vikas Sukhatme, Woodruff Professor of Medicine, dean of the Emory School of Medicine, and chief academic officer of Emory Healthcare, came to Emory in late 2017 from Harvard, where he was chief academic officer at Beth Israel Deaconess Medical Center in Boston and the Victor J. Aresty Professor of Medicine. He is known for . . .

‘A Propensity to Act’ So you’ve had a chance to settle in, observe the culture, and meet the faculty, researchers, and clinicians—often the same people, given that this is an academic medical center. What impressed you?

VS >> People are really excited about working

“ Our dedication is ultimately to the thousands of patients [our faculty clinicians] serve each year, the immeasurable human impact of our game-changing discoveries, and the clinical excellence and compassion we’ve instilled in the students, residents, and fellows who have learned and trained in our School of Medicine.”

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with each other. That’s not true at every institution. There is tremendous support from the community. That includes the public overall, but also foundations that have been great supporters of Emory in the past and continue to be. And there is an incredibly diverse and talented group of individuals here.

You’ve described yourself as a “techie at heart, with a quantitative sense of the world.” How does that inform your deanship?

VS >> I like numbers, I’ve always been interest-

ed in math and so on. I tend to be data-driven—I like to see evidence, to make decisions based on data and have outcomes we can measure.

You’ve said the deanship of a medical school is a “multidimensional job.” What in your life and career has prepared you for your current position?

VS >> I have had the privilege of meeting peo-

ple from all over the world and gaining diverse perspectives. I’m from India originally, but had the opportunity to grow up in Rome, Italy. From there I moved to the US, from the East Coast to the West Coast to the Midwest, and now, here to the South. What I really enjoy is learning from everybody, and the diverse background that I’ve had the good fortune of being a part of certainly feeds into that.

We have three missions in the School of Medicine—discovery, teaching, and clinical

care—and I’ve had some experience in each of these. All three have to work together to the benefit of each. That’s the exciting part of this job. We must seek every opportunity to connect these dimensions. Every patient encounter is an opportunity to help, share (teach), and discover—with the first always trumping the other two (to paraphrase one of my mentors, Dr. Mitchell Rabkin).

BOLD LEADERSHIP In addition to being dean, you are also chief academic officer of Emory Healthcare.

Can you speak to the relationship between Emory School of Medicine and Emory Healthcare?

VS >> We have a very large system—even with-

in Emory Healthcare, there are multiple hospitals and clinics, and that has its own challenges.

The physicians who work at Emory Healthcare are largely faculty in the School of Medicine. Faculty also work at the Atlanta VA Medical Center, Children’s Healthcare of Atlanta, and Grady Hospital. Emory Healthcare provides the School of

researcher—I look for the applications of what I might discover. I enjoy finding connections between clinical problems and scientific advances within, and especially across, areas.

How important is innovation at an academic medical center like Emory and what are its primary drivers?

VS >> Innovation is a key part of what I and

many others in the School of Medicine would like to see as a hallmark of the school. I’m making no bones about it. What is most important is that people connect with each other, that they see that by working together, we can solve the big problems that are out there. That’s a necessity these days. No one person or one group knows it all. Furthermore, some of the best ideas come from people who’ve never worked in the field.

You’ve mentioned some new initiatives the School of Medicine will be involved in to foster these connections across the university and with industry partners.

Medicine with significant financial support for the academic mission, meaning both research and education. In turn, the clinicians Emory Healthcare can attract are of a higher caliber.

How has your own research evolved over time?

VS >> I started out as a basic scientist, asking

questions about biology and gene regulation in particular. I am now more of a translational

VS >> We have the Emory Healthcare Innovation Hub, supported by the Woodruff Health Sciences Center, with faculty and staff largely from the School of Medicine. The Hub is devoted to digital health, and opportunities for working with companies in that area. It is building an ecosystem of diverse companies in the health care space that come together, using Emory as the place where they can interact.

There’s also the Biomedical Catalyst program, which started last year and is jointly funded by the School of Medicine and the Woodruff Health Sciences Center. We’re looking for novel ways of interacting with industry as they develop new devices and products, right from the get-go. The Catalyst program encourages Emory medical faculty to be entrepreneurial, providing them guidance along their journey, and is working closely with the university to establish a venture fund to seed novel Emory technologies. It is also interacting with the Biolocity program in the Coulter Department of Biomedical Engineering.

A third program is an interface with the university at large, setting up a Center for Innovation and Entrepreneurship. It’s being funded primarily by the provost’s office, Goizueta Business School, the School of Medicine, and Emory College. This will be largely directed toward

Sukhatme’s Values

(from A to F) to drive innovation ACCELERATION: “I’d rather see that we move faster, that we commit to certain things, instead of deliberating forever as to what to do. So, a propensity to act, if you will.”

BOLDNESS: “How bold are the ideas we’re putting forward? I’d like to encourage people to think outside the box, to go beyond what is obvious and not be complacent and accept incremental ideas.”

CONNECTIVITY: “Connectivity, especially across groups with orthogonal expertise, and a search for synergy is critical to driving innovation.”

DATA-DRIVEN: “I’m driven by data, at baseline and as a measure of progress.”

ENGAGEMENT: “I aim to foster engagement. There’s a lot of data showing that organizations that are the most innovative engage a diverse group of people at all levels of the organization.”

FUN: “If we’re not having fun as we build programs and tackle problems then we’re not going to get anywhere.”

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In Search of Affordable, Lifesaving Treatments Emory and the Morningside Foundation are joining forces to promote research on scientifically promising, readily available, and cost-effective treatments for cancer and other diseases. Through a $10 million investment, the Morningside Center for Innovative and Affordable Medicine, based in the Woodruff Health Sciences Center, will bring together faculty and students from across Emory. “We will focus initially on drugs already approved by the FDA that could be repurposed for cancer and other conditions,” says Vikas Sukhatme, the center’s founding director. “We anticipate results from these studies will have rapid and global impact.”

learners—students and trainees.

We’re also working closely with Emory’s Office of Technology Transfer (OTT), looking at how we can be more efficient in getting our ideas out there and bringing entrepreneurs into Emory to help us decide what is worth patenting, for example. At the end of the day, most drugs and devices are developed by industry, so we do need to have an eye on how to best commercialize innovations. OTT provides valuable guidance to faculty seeking to commercialize their inventions.

In fact, you and your wife, epidemiologist Vidula Sukhatme, started a center to encourage innovation. What is its purpose?

VS >> Yes, we have recently established the Morningside Center for Innovative and Affordable Medicine (see sidebar) to address ideas that show promise but lack financial incentive. This center grew out of a nonprofit called GlobalCures that Vidula, an epidemiologist with expertise in health care information systems, and I started a few years ago. We recognized that there are scientifically promising medical ideas that are not being developed because of a lack of financial incentive.

What are the I3 (or I-cubed) awards?

Moving as an infant with his family from India to Italy, Sukhatme attended Notre Dame International School in Rome. At 16, he left for college at MIT, where he received a bachelor’s and a doctorate in physics. He went on to receive a medical degree from Harvard.

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VS >> We’ve set up a number of awards to 3 promote innovation called the I awards, which stands for imagine, innovate, and impact. Some 3 of the awards we call the I Wow awards. I’m asking our faculty to showcase their best ideas.

3 The I Nexus awards are meant to bring people together—ideally, folks who have not worked together before, around a problem that they 3 think they can solve by collaborating. The I Venture awards are for ideas that are likely to be 3 successful commercially. We have also I awards on the education side.

What has been put into place toward your goal of increasing engagement?

VS >> It is difficult to communicate to a group

of 3,000-some faculty, 2,000-plus staff, and 1,000-

plus students and trainees, but we need to find multiple avenues to do so. One thing we’re starting is “connectivity chats”—periodic updates from me and other leaders to inform faculty, staff, and learners on the state of the school.

You’ve said that—in addition to transparency, efficiency, meritocracy, and inclusivity in medical training and practice—there needs to be a “little quirkiness, as well as humor and humility.” Can you expound?

VS >> It’s absolutely essential given the seriousness of our work, especially work that directly impacts patients, that we have these qualities in place—just to keep our own sanity, frankly. A little quirkiness helps you think outside the box. Humor allows us not to take ourselves as seriously as we sometimes are apt to do. Humility, we learn very quickly as doctors.

If somebody complains to me, I’ll say, let’s take a walk and go over to the wards, and we quickly realize how limited our medical knowledge really is and how ineffective many of our treatments are. Humility also allows you to connect with people because if you’re humble, you will be curious and receptive to learning. And curiosity is critical if you are going to find new solutions.

As leader of an academic medical center that is part of a larger university, how do you elevate the mission beyond rankings?

VS >> Rankings are a surrogate for impact— typically those who rank higher are able to do more things that lead to important discoveries.

Our true north is to ask, what impact do our discoveries have? How do they enable better care of those who are suffering from disease?

How do we prevent disease? And how well do we serve vulnerable populations? n

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I knew what was going to happen, I knew I was going to die,” says Michael Golden. In 2010, Golden (right) was diagnosed with advanced cancer and was advised to go home and put his affairs in order. Renal cell cancer had invaded one of Golden’s kidneys and extended into the vena cava—the largest vein in the body—all the way to his heart.

Golden’s oncologist kept looking for other avenues of hope and found Winship’s urologic cancer surgeon, Viraj Master. The dire outlook had discouraged Golden, and he would not take Master’s call.

“Finally, my oncologist from Kaiser called the house and said, there’s a doctor from Emory calling you, you need to talk to him. So Dr. Master called back, and I answered his call.

We talked and he told me what he thought we could do,” Golden remembers.

Phase I clinical trials are the standing-on-the-high-dive moments of cancer research BY

Catherine Williams

Ready Phase One

PHOTO BY STEVE NOWLAND

1

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PHOTOS BY STEVE NOWLAND ss

Tom Broyles, an artist from Decatur with metastatic renal cell cancer, went into a Phase I trial combining immunotherapy with a new drug. He says the treatment started working right away. The new Phase I Unit, he says, keeps in mind “quality of life” as well as quality of care.

“I never will forget it. It was a rush of emotions like you’ve never felt in your life. From going from knowing that you have just a few months to live, to, you know, he mentioned the word ‘cure.’ ” Master specializes in exactly the type of surgery Golden needed. He enlisted a vascular surgeon and cardiac surgeon to work alongside him, and together they performed a nearly 15-

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hour surgery to remove a kidney and the tumor that snaked up the length of Golden’s vena cava.

The surgery kept him alive. Years of battling renal cancer with different chemotherapy drugs followed, but the cancer kept coming back. In 2017, Golden started a new Phase I clinical trial testing a combination of an approved small molecule anticancer drug with an inves-

tigational drug targeting tumor-based metabolic pathways. The new therapy worked, but it also threatened to shut down his remaining kidney and his life.

His medical oncology doctor, Winship’s M. Asim Bilen, decided to keep him on the investigational drug but eliminate the other drug, which was causing the side effects. He continued on the investigational drug.

“I feel amazing. I’ve gained back 35 pounds, my hair has grown back, I haven’t felt this good in literally over 10 years,” Golden says today.

And the 61-year-old retired Atlantan looks as healthy as he feels. Which is amazing, considering that survival rates for advanced kidney cancer have not been good.

“They tell you up front that you’re not taking this drug as a cure, you’re taking it to help other folks, and that was fine with me. We were excited, we weren’t scared, we were looking forward to getting something that might work,” says Golden.

Before an experimental anticancer drug is approved by the US Food and Drug Administration for general public usage, it goes through three phases of testing in humans. All three phases are crucial to establish the safety and efficacy of new therapies.

But Phase I clinical trials, the first time a new treatment is tested in humans, are the standing-on-the-highdive moments of cancer research.

Sometimes patients go into Phase I trials because there aren’t any other good options left. Often, they’ve spent years on standard-of-care treatments that have had some success but are no longer working.

Phase I trials are not always a lastditch option. Sometimes doctors recommend a Phase I trial to a patient who’s at an earlier point in treatment because the new therapy has the potential to be more effective than other available treatments for that patient’s disease.

Tom Broyles, a semiretired artist from Decatur, is another patient with renal cell cancer. He started out with

ACADEMIC MEDICINE a less dire prognosis but after a kidney was removed, the cancer came back and metastasized. Having only one kidney complicated his ability to have radiation and chemotherapy, so in 2017 Broyles went into a Phase I trial combining immunotherapy with a new drug. He says the treatment started working right away.

“They were like whoa—the cancer has reduced more than they ever expected. Lo and behold by the end of the summer, there was no detection. This all happened within one year,” says Broyles, who now spends his time in his art studio, having retired from a position as a financial systems analyst with the city of Atlanta.

Everyone wishes for these kind of results, but the success rate of new cancer drugs has been historically low.

Patients are carefully advised about the downsides of a Phase I trial—the possible risks and side effects, the time commitment and extra tests required, and perhaps most important, that the treatment may not benefit the patient.

The consent agreement spells it out: “Your condition may improve while you are in this study, but it may not, and it may even get worse.”

Instead, patients are told that the greatest value of being in a Phase I trial is to the patients who come after them; hopefully the study will either bring a new treatment to light, or rule out an ineffective one.

But Phase I trials require a significant infrastructure and commitment of resources: specially trained nurses, pharmacists, support staff, a knowledgeable research staff to handle massive amounts of regulatory paperwork, special equipment, and a dedicated space.

So when Winship Cancer Institute of Emory University decided to expand and upgrade its original Phase I Unit, it pulled out all the stops.

“The investment of patients, physicians, nurses, other clinicians, health system leaders, and research staff in the design and execution of this unit has been nothing short of amazing,” says

R. Donald Harvey, who has been the director of the Phase I Clinical Trials section since Winship launched the first unit in 2009. “We will continue to grow the Phase I program and benefit an even greater population in the years to come.”

Making staff and patients partners in the design process was essential to the new Phase I Unit. Melissa Childress, vice president of Winship Cancer Services, says Winship is taking this approach in construction and remodeling projects throughout the Emory Healthcare system.

Harvey supported the Phase I lead nurse practitioner, Colleen Lewis, and her team to take the lead in designing the new unit. They started with a big unfinished space on the fourth floor of the new Emory University Hospital Tower, triple the size of the original

patients with the highest standards of safety and efficiency, and it also prioritizes the comfort of patients and caregivers with specially designed treatment areas, furniture (like heated treatment chairs), and amenities. The treatment bays all have full-length windows that provide light as well as campus and skyline views.

“The focus on the patient is clear from the moment you walk in,” says Lewis.

The physical surroundings reflect the same concern for a patient’s quality of life as the care. “All those things we do day to day, they don’t forget about it: We want to treat you but we want your quality of life to be as positive and as energetic as it can be,” says Broyles.

The Phase I Unit started treating patients in January 2019. Golden and Broyles were among the first patients

Phase I clinical trials go to the heart and soul of a cancer institute’s mission to turn scientific discoveries into therapies that help cancer patients.

unit, and assembled a multidisciplinary team of patients, nurses, physicians, and research staff.

The team spent weeks together sketching out floor plans and drawing up lists of “hopes” and “please considers,” then saw their ideas transformed into a life-size 3-D model of cardboard where they ran clinical scenarios and tweaked the design.

Because the tolerance for a new treatment is unknown, medical staff document every nuance of the patient experience and must be ready to respond to unexpected reactions.

The challenge was to create a space focused on patient safety and comfort, yet able to support the painstaking demands of rigorous clinical research.

Construction started in summer 2018 and finished by the end of the year.

The new unit enables staff to treat more

in the door. In its first year of operation, the Winship Phase I Clinical Trials Unit received the highest possible patient satisfaction ratings.

“Phase I clinical trials are where we find out if scientific discoveries have the potential to become new cancer treatments, and there’s no other place in Georgia where you can get therapies like the kind you get in this dedicated Phase I Unit,” says Walter Curran Jr., executive director of Winship Cancer Institute.

You might think that being one of the first people to try a new cancer drug would be anxiety provoking.

But patients like Golden, Broyles, and others say that taking part in this early phase of cancer research makes them feel a part of the discovery process and gives them hope that even if their trial doesn’t work, there will be others that may. n

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ALYSSA POINTER/ATLANTA JOURNAL-CONSTITUTION VIA AP

CYSTIC FIBROSIS

WARRIORS With new weapons, medical teams are launching an aggressive defense against this genetic disease BY

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Mary Loftus

BET TER LIVING

Andy Lipman first researched cystic fibrosis (CF) when he was 9 years old, wanting to find out more about the disease he’d been diagnosed with at birth. He discovered that people with CF, a progressive, genetic disease that causes thickened mucus to form in the lungs and other organs, rarely lived to age 25.

“I was shocked,” he says.

“My parents were always telling me, you’ll be fine. But here was the encyclopedia, telling me something else. Which was true? I got really upset.”

Andy Lipman (on his mother’s lap) was diagnosed with CF when he was born. His older sister died of CF as an infant.

Left: Andy Lipman, 46, who has CF, uses a percussive vest daily to ease his breathing. He has outlived every prediction due to new drugs and therapies.

Lipman’s sister had died of CF before he was born, living only 16 days. “Growing up, I didn’t talk about my CF or let anyone in,” he says. “My parents told my teachers. I was embarrassed and afraid—I didn’t know how long I was going to live.”

His parents encouraged him to live a normal life and play sports, which “really helped me physically.”

He went to a pediatric CF clinic for his care all the way through college. “There were no adult clinics back then,” he says. “Adult CF was an oxymoron. People just didn’t live that long.”

Lipman, now 46, has benefitted from advances in treatment and medications that have extended the median life expectancy of people with CF to 42 to 47 years, with some patients living far beyond that.

His doctor, Emory pulmonologist Randy Hunt, says CF has become a chronic—if still fatal—illness.

“It’s still a tough disease to be born with,” Hunt says. “When you’re very young, your parents can make you do all the right things.

As you get older and go to school, you have to take handfuls of pills every time you eat, wear a mask at times, and use a vest for high-frequency chest wall oscillation…things that detract from your social experiences. Early adulthood can be a really difficult time. Deaths for CF patients still peak in their 20s and 30s.”

Indeed, in college, Lipman experienced depression and anxiety.

He had to carry his medications everywhere.

The percussion vest he used each day to break up the mucus in his lungs was big and loud. “It was hard to feel normal, like I fit in,” he says. “I stopped doing treatments or taking my medications. I was skinny and felt ugly.” He stopped going to classes, and seldom left his room on weekends.

“My lung function went down pretty severely. Things were falling apart,” he says. “But then I got mad at myself and turned it around.” Lipman took a weightlifting class, got stronger, and went from 100 pounds to 165 pounds. He did his treatments every day.

“Living life requires more than just breathing. It requires loving every minute we have on this earth,” Lipman says.

New medications and therapies are help-

ing CF patients lead longer, healthier lives—a feat that still requires a lot of care and self-discipline.

There is still no cure for CF, but there are drugs to help thin and clear the thick mucus from the airways, enzymes to help digest food, and antibiotics to prevent and treat infections.

Recently, medications tuned to the genetic mutations that cause the disease have helped people with CF experience fewer flare-ups and hospitalizations and improved lung function.

Inhaling hypertonic saline as well as other medications through a nebulizer helps with breathing problems. “Most patients use the nebulizer two times a day for at least an hour, and sometimes up to four times,” Hunt says.

“People think of CF as a lung disease, but really it is a systemic illness, impacting a patient’s bones, reproductive system, GI tract, pancreas, and other internal organs.

Many patients need to eat 3,000 calories a day just to maintain their weight, and they have to take one to 10 pills every time they eat a meal,” says Hunt, an assistant professor of medicine at Emory

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“Living life requires more than just breathing. It requires loving every minute we have on this earth.”—Andy Lipman

who completed his fellowship in pulmonary and critical care medicine at Emory in 2013, and stayed to practice.

Hunt says they see about 318 patients in Emory’s Adult Cystic Fibrosis program. For outpatient care, patients are seen at the Emory Clinic.

Pulmonary function testing and visits with each member of the CF care team take place within the patient’s exam room.

“We are set up as their health care home,” says Hunt, medical director of the Adult CF clinic. “For instance, patients may have endocrine problems, and we have a great endocrinologist.

They also have higher rates of anxiety and depression, so we offer mental health counseling.”

Also on staff are a GI specialist, a dietician, three nurses, a social worker, and two respiratory therapists.

There is no waiting room, since patients with CF cannot be closer than six feet from each other because they can carry bacteria in their lungs that could be harmful to someone else with CF, as reflected in the recent movie/teen love story Five Feet Apart. There is also a complex protocol to disinfect the exam rooms, Hunt says. “Our patients don’t present a danger to people without CF, only to each other,” he says.

“It’s a socially isolating disease—you can’t be around anyone else who understands exactly

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what you’re going through. Social media has been wonderful for people with CF.” Because of the seriousness of the disease, the clinic sees CF patients every three months even when they are doing well. Patients often start out in the Children’s and Emory Pediatric Program and transition to the Emory Adult Program by the time they turn 21. The Children’s and Emory CF Care Center, which encompasses both programs, is one of the largest in the country.

The Care Center follows about 375 pediatric CF patients, says director Rachel Linnemann, an Emory assistant professor of pediatrics. “Starting as young teens, we teach them the skills and knowledge they need to succeed in adult care,” says Linnemann.

“For instance,” says transition coordinator and nurse practitioner Brandi Middour-Oxler, “we have teens take a nutrition quiz to ensure they understand why they take certain medications and supplements with meals.”

“This is a high-risk time for our patients, we call it the ‘adolescent slide,’ ” says Linnemann.

“We want to help them understand the rationale behind their treatments, the why.”

About 85 percent of the CF center’s patients participate in research, whether donating blood or mucus samples or participating in clinical trials. “We’re an active site for trials, and have

tested several classes of the new modulators, including the combination of lumacaftor and ivacaftor (Orkambi), tezacaftor and ivacaftor (Symdeko), and the new triple combination elexacaftor/tezacaftor/ ivacaftor (Trikafta),” Linnemann says.

“We’re seeing these drugs work for many patients, with improvements in lung function and less hospitalizations. Eventually 90 percent of people with CF could benefit from modulator therapy.”

Pediatric deaths from CF have gone down considerably in the past decade.

“It is fairly rare to die younger than 21 in our program,” she says.

BET TER LIVING

Far left: Corbin Heyl, 19, is beginning preparations to move to Emory’s Adult CF Program with help from Rachel Linnemann, head of the Pediatric CF Program, and transition coordinator Brandi Middour-Oxler. Left: Randy Hunt, head of Emory’s Adult CF program, says his patients are living longer and better, but “it’s still a tough disease to be born with.”

Right: Andy Lipman with wife, Andrea, and children, Avery and Ethan.

“More than half of people living with CF are now adults.” Indeed, the median age of death was 30.8 years for those who died from complications of CF in 2018. Even more hopeful, the median predicted survival of an infant born with CF in 2018 is 47.4.

The increasing life expectancy is good news for Corbin Heyl, 19, a Children’s and Emory CF patient whose younger brother Luke, 17, also has CF. Corbin, who is at Children’s Healthcare of Atlanta for a checkin because his lung function dropped and traces of pneumonia were detected, says, “CF doesn’t really scare me. It’s just inconvenient.”

You can definitely live a more normal life.”

The brothers are planning to transition Growing up, Lipman says, he had no CF role from the pediatric CF program to the Emory adult program together, and are hopeful about models or sources of inspiration, but that has new medications. changed. He has completed his fourth book, The Corbin says he and Luke are pretty good CF Warrior Project: 65 Stories of Triumph against about staying the required distance apart (“It’s Cystic Fibrosis (cfwarriorproject.org). “All around just kind of a habit in our house”) unless they the world,” he says, “people who have CF who are playing basketball. “When we guard each are doing amazing things: a circus acrobat, a other, we get pretty close,” he admits. mountain climber, a firefighter. They’re all ages, Sports and physical fitness are a way for from teens to 70s.”

And they are fathers. Although Lipman, like CF patients to be proactive about their health.

Lipman, now a husband and father of two living the vast majority of men with CF, lacks a vas defin Sandy Springs, is a Little League coach and erens, he and his wife (who is not a carrier) were avid runner. “I run a half hour a day and do the able to have children through in vitro fertilizaPeachtree every year,” Lipman says. “And I see tion. “We have a terminal, invisible disease,” a personal trainer a couple of times a week.” To he says. “We need hope raising, to believe life is honor the brief life of his sister, he hosts a popthere for the taking, regardless of the hand you ular “Wish for Wendy” softball tournament in are dealt.” n Alpharetta each fall, and has raised more than $4.5 million over 20 years for >> CYSTIC FIBROSIS is a progressive genetic disease that damages the lungs and other organs. It occurs when mutations in the CFTR gene form the CF Foundation. “So a dysfunctional version of a protein, setting off a cascade that ends with many new drugs are out, mucus clogging the lungs and GI tract, and frequent infections. A conwith more clinical trials sortium of researchers at the Emory+Children’s Cystic Fibrosis Center are and breakthroughs comstudying new ways to understand and treat CF, such as Marcus Professor ing,” he says. “Treatments Nael McCarty, who is researching drug-resistant strains of bacteria that take less time and are infect CF patients as they age. lighter and more portable. It’s easier to travel.

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When Sleep is a Problem BY

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Mary Loftus

n ILLUSTR ATION BY

John Krause

W

DINNER WITH A DOCTOR: SLEEP

“ I don’t have a problem falling asleep, it’s staying asleep.”

“Is taking Melatonin every night bad for you?” “ My partner says I snore all night.

Do I have sleep apnea?”

W

With the sun about to set, a small group of insomniacs, somnambulists, and incessant snorers gathered over an autumnal dinner to delve into the mysteries of sleep—and sleeplessness.

Serving as their guide through this dreamscape: Nancy Collop, professor of medicine in pulmonary, allergy, and critical care medicine, sleep medicine, and neurology, and director of the Emory Sleep Center.

The Emory Sleep Center, at Executive Park in Brookhaven, has its own sleep lab with eight bedrooms, an interdisciplinary team of 12 providers, including sleep specialists, and its own medical equipment company that provides CPAP (continuous positive airway pressure) devices.

It also offers home testing—an increasingly popular option for those who wish to be tested for sleep disorders from the comfort of their own beds.

Nancy Collop (above), director of the Emory Sleep Center, says severe, untreated sleep apnea can lead to other health problems down the road, like high blood pressure or stroke.

“Last year, we did more than 1,900 lab studies and 2,200 home studies,” says Collop.

“It was the first year we did more sleep studies at home than in the lab.”

Emory also has two other clinics with sleep clinics embedded: the Pulmonary Medicine Department at Emory Midtown Hospital and Emory Saint Joseph’s Hospital.

Before Collop’s main course had arrived, our five panelists were already peppering her with questions. Emory Medicine’s Dinner with a Doctor was off to a rousing start.

“If you have sleep apnea should you take sleep aids?” a panelist asks.

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“If you’re treating your sleep apnea, it’s probably okay,” she replied. “Most prescription sleeping pills—Ambien, Lunesta—and over-the-counter sleep aids are pretty safe, if you’re using a CPAP or other treatment.”

Caution should be used with drugs that are not sleep aids but are sometimes used for sleep, like benzodiazepines such as Valium and Xanax, or opioids prescribed after surgery may suppress respiration, Collop says.

“But again, as long as you are using a CPAP machine, you should be OK,” she says. “Some patients use sleep aids to help get used to using a CPAP, to overcome their anxiety.”

“Can you describe what sleep apnea is?” a panelist asks.

“Yes, I do that every day,” Collop says. “Two things usually happen when you go to sleep. You lie down and your muscles relax. Obstructive sleep apnea, the most common, involves your air vent—your throat. When you go to sleep, the muscles in your throat relax behind the hard palate, from the soft palate on down, that area is collapsible.”

When tissues in your throat (and sometimes your nose) start to vibrate, you are snoring. This may or may not mean you have sleep apnea. “I like to say, not everybody who snores has sleep apnea, but almost everybody who has sleep apnea snores,” she says.

Collop uses the analogy of a straw: “As your air vent gets narrower, or your throat muscles start to soften and collapse, you have to work harder to breathe. Sometimes that airway closes completely and your brain says, ‘Hey, there’s a problem here,’ and wakes you up. As soon as you wake up, the muscles tighten and the problem is gone.”

The upshot: most people who have sleep apnea don’t know they have it. “All they know is their partner is nudging them, complaining about their snoring, or they just don’t feel like their sleep is restorative,” she says. “They may have a

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dry mouth in the morning, from trying to get air. Occasionally, they may dream about drowning. It is not such a silent disease for the person sleeping beside them, however.”

Sleep Apnea: More Than Just Snoring In central sleep apnea as opposed to obstructive apnea, the brain fails to send signals to the diaphragm to breathe during sleep, and the sleeper will have breathing pauses.

About 10 percent of people with sleep apnea have this type, Collop estimates.

“I wake up occasionally gasping for breath. Is that sleep apnea?” asks a panelist.

It can be, says Collop, but apnea must be diagnosed through a sleep test, either in the lab or at home. A patient must have more than five breathing/sleep interruptions per hour before they can be classified as having sleep apnea.

Sleep apnea can be damaging to one’s health, she says, especially in regard to feelings of fatigue and an increased risk of hypertension and/or morning strokes.

“Men get sleep apnea more than women, but women catch up after menopause,” Collop says. “Most people present in their 40s and 50s, although I saw an 86-year-old today.

We treat more for the cardiovascular benefits when patients are younger; it’s a quality of life issue for the elderly.”

“My friend says I snore,” says a panelist. “She recorded me, and it was like you went home and recorded my dad or my brothers. Is sleep apnea hereditary? Is it weight related?”

If you have a first-degree relative with it, you are four times more likely to have sleep apnea, says Collop. “And 70 percent of people who have it are overweight, but you don’t have to be overweight to have it. Skinny people can have it.”

The conversation moved to CPAPs, with a few panelists saying they tried but couldn’t get used to them. “I couldn’t

DINNER WITH A DOCTOR: SLEEP

do the CPAP mask over my nose and mouth at the same time,” said one.

Collop urged her to try again with one of the newer machines. “The CPAP works by providing positive airway pressure—all it does is blow air in to keep the airway open. That hasn’t changed since 1981,” she says. “But the machines have gotten smaller, quieter, and less troublesome. Almost all have humidification systems and you can adjust the temperature of the air and the humidity.”

Today, there also are many different options for CPAP masks—face masks, nasal masks, special pillows, “you name it,” says Collop “It used to be, say, 10 years ago, everyone had to have a sleep study without the CPAP and then another sleep study with a CPAP, so it could be adjusted correctly,” she says. “Now, APAPs (auto-titrating positive airway pressure machines) are auto adjusting. The sensor monitors airflow and senses if you’re having interruptions. If your breathing stabilizes, it sets itself on the lowest air pressure needed. The machines all have sophisticated software programs and can tell if the mask fits well, how it’s working, and the time of day you’re using it. We have many patients who never set foot in a sleep lab at all.”

A panelist says he has had a CPAP for a decade and it “works like a charm, but I would dump it tomorrow if you gave me something better, such as a surgical solution.”

One surgery that is fairly new, says Collop, involves implanting a hypoglossal nerve stimu-

lator, which is like a pacemaker for your tongue.

“Some people have a fantastic response, but for others it doesn’t work at all,” she says.

Sleep specialists can do a test that shows whether an apnea patient would be a good candidate for the surgery by sedating them with medications that simulate sleep in a supervised setting and observing specifically how their airway collapses when they sleep.

Hello Darkness, My Old Friend Panelists shared a variety of medications they have tried, or are currently using, to fall or stay asleep: Gabapentin, a seizure drug sometimes used for pain control or restless legs syndrome (RLS), and Mirapex (used for Parkinson’s and RLS, but with a side effect of sleepiness), a host of hypnotics (like Ambien and Lunesta), benzodiazepines (like Xanax and Klonopin), antidepressants (like trazodone), and over-thecounter medications and herbs, such as ZZZquil, Benadryl, Melatonin, and Valerian root.

“It seems that for insomnia, there are mostly hypnotics. Anything better coming down the pike?” asked a panelist.

Sleep aids can lose their effectiveness over time, Collop says. “And no one should be taking medication every night to fall asleep.”

Additionally, “a lot of the medications for RLS, if people use them night after night, they develop augmentation syndrome, which means they have more symptoms earlier in the day,” Collop says.

“ I like to say, not everybody who snores has sleep apnea, but almost everybody who has sleep apnea snores.”

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Tracey Dodson real estate agent

Linda Dobson graphic designer

Elizabeth Hautau Karp artist, designer

Mike King retired journalist

Lisa Smith gift/estate planner

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EMORY MEDICINE

Restless leg syndrome causes an uncontrollable urge to move one’s legs, typically in the evening or nighttime when sitting or lying down.

“You mentioned that one should not be on sleep medication for a long period of time,” one panelist asks. “What is considered a long period of time?”

“That depends,” answers Collop. “Are you taking it intermittently or every day?”

Sleep specialists, she says, are moving toward behavioral therapy to readjust people’s sleep habits, which is proving more valuable long-term than sleep aids that may have diminishing effects over time.

Cognitive behavioral therapy for chronic insomnia is time intensive, however, and sometimes insurance won’t reimburse. In response, smart phone apps and internet-based programs have been developed that take people through a similar program, although “face to face is, of course, probably better,” Collop says Many of the programs focus on mindfulness and relaxation. “What happens with people who have insomnia is that it becomes a self-fulfilling prophecy,” she says. “Am I going to sleep tonight? There’s so much anxiety that it builds upon itself and makes it even harder. You spend a lot of time in bed but not sleeping.”

Stimulus control is important, says Collop.

“If you wake up in the middle of the night, get out of bed and go do something that’s relaxing, don’t do your taxes or read email. Do something in a low, dim-light environment. Try to associate being in bed with being asleep.”

She encouraged patients to keep a sleep diary for a week or two to get an accurate picture of what specifically is going on with them. “There are two things that determine sleep: how long you’ve been awake and your circadian rhythm,” Collop says. “Even if you stay awake all night, during certain times of day you can’t stay awake to save your life, but other times are not so bad.”

“I can always fall asleep, it’s the waking up three to four hours in,” says another panelist.

“There is an old theory of two sleep periods, early and late sleep,” Collop says. “In the past, it was thought that people would sleep for a while, get up and do stuff, then go back to sleep.

Nowadays, we (as a society) believe you should sleep through the night,” Collop says.

Waking in the middle of the night gets to be a habit, she says, so sleep specialists often use

sleep restriction to break that cycle, so you don’t always wake up at the same time.

“I’m doing that right now,” says a panelist.

“I am supposed to not go to sleep until 1:30 a.m. and get up at 7.”

Herbal and Hormonal Remedies Several of the panelists say they take melatonin before bed.

“Melatonin relaxes me but doesn’t keep me asleep,” says one panelist.

“Have you tried the kind with 5HTP in it?

That works well for me,” says another.

Collop says melatonin is naturally produced in our bodies and its production is driven by our circadian rhythms—it is released when the lights go off, due to receptors in the back of the eye that sense darkness.

“It starts to be released in early evening, and peaks at 2 to 3 a.m,” she says. “Although people do have different circadian rhythms…there really are night owls and morning larks. Sometimes we use melatonin to readjust circadian rhythms. It’s a great thing for jet lag, but not so much for insomnia.”

While melatonin is generally very safe and not going to hurt you, said Collop, in a study of different melatonin preparations the ingredients varied greatly. Some even had serotonin in them, “which is not good if you take antidepressants.”

“Valerian root works really well for me,” says a panelist. “I make it in tea.”

DINNER WITH A DOCTOR: SLEEP “What about CBD oil?” asks a panelist.

Collop said there are no definitive clinical studies on CBD oil as a sleep aid. “I can’t tell you how many patients ask me about that,” she says.

“There is a bit of data on how THC (the psychoactive ingredient in cannabis, which is not in CBD oil) impacts sleep,” she says. “It seems to be a very individual response.”

Lullaby, and Good Night As evening turned to night, the panelists began asking an array of questions on topics from reading in bed to having a nightcap.

“My sleep has been poor since I’ve gotten to ‘middle age,’ is that due to menopause?” asked a panelist.

“It’s probably not menopause, although night sweats and hot flashes can wake you up,” says Collop. “As we age, people in general tend to have more fragmented sleep.”

“How much sleep are you supposed to get, and what are the stages?” asks a panelist.

In the span of a night, says Collop, sleepers usually get stage or level 1, non-REM, 5–10 percent; non-REM stage 2, 50–60 percent—most of night; non-REM stage 3, 10–15 percent; REM remains stable, about 20–25 percent, every 90–100 minutes. Your first REM period is shortest, it occurs about 90 minutes in. The longest REM period is usually in the early morning. Your deep sleep (NREM 3) generally occurs during the first third of the night.”

“What about sleepwalking?” People who sleepwalk— kids and even some adults—typically do so during the deep part of non- REM sleep, Collop says. “People with a history of parasomnias shouldn’t take Ambien. There is a warning about it. This happens in non-REM level 3 sleep.”

“Is there such a thing as a power nap?” asks a panelist.

“Sure, but you don’t want to take a nap that gets you into deep sleep, it’s hard to awake from it,” Collop says.

“Restrict naps to 30 minutes or less. Most people won’t hit REM during a nap, but if you’re sleep deprived, you tend to go right into REM.” “What about reading in bed?”

Reading a book is fine, says Collop.

“How about on a Kindle?”

“If you use the low light, or blue-light blocking,” she says. “Blue light from electronic devices is the most stimulating light.”

“A glass of wine?”

“Don’t use alcohol to sleep, even though it is the most common hypnotic used,” Collop says. “Alcohol helps you go to sleep, but once it’s out of your system your sleep is worse.

You tend to wake up, dehydrated. And it can definitely make sleep apnea worse. Also, avoid caffeine, probably after 3 in the afternoon, although it affects everyone differently.”

Sleep problems are not rare, Collop assures the panelists.

In the US, 70 percent of adults report that they get insufficient sleep at least one night a month, and 11 percent report insufficient sleep every night.

The CDC estimates that one in three adults don’t get enough sleep, which it counts as seven or more hours.

Incorporating exercise into your life, although not right before bed, will help with sleep, says Collop, but there is no medication or drug that will give you completely natural, restorative, full-cycled sleep.

“So, it seems like it’s time for bed,” says one panelist, as darkness closes in around the diners.

And with that, everyone was off in search of a common, elusive goal: a good, solid night’s slumber. n

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MEDICAL ETHICS

Rideshare Dilemma

A young man repeatedly reports to the emergency room with elevated blood alcohol content levels and health problems consistent with alcohol abuse. The attending physician knows from previous interactions with the patient that he drives for a ride-share company.

The attending is considering reporting the alcohol abuse to the patient’s employer but calls for an ethics consult since she is unsure if it is the right move. It’s a public hazard

to have a driver potentially operating a passenger vehicle while intoxicated; however, reporting may violate confidentiality standards and could cost the man his livelihood. Should the patient be reported to the ride-share company?

Physicians and other medical professionals operate under the principles of beneficence and non-maleficence, meaning they are charged with weighing the benefits and risks of procedures to “do good” for the patient and to avoid harm at all costs.

The physician must also respect patient autonomy and find a way to advise him without taking away his decision-making power. This case questions patient autonomy outside of the examination room. It asks whether it’s ethical for a physician to inform a patient’s employer of a health issue, thereby taking away the patient’s autonomy to make that disclosure, but acting for the benefit of the public.

So, how do we respect autonomy and confidentiality when there is a risk of harm to the patient and/or others? Mental health providers are required to warn any intended victims of threats of serious harm from their patients—should this idea be expanded outside of mental health? This type of mandatory reporting is already controversial and requires that the provider has a certain amount of evidence that indicates a serious threat.

In the case of our ride-share driver, the identified risk is based on the potential for an overlap between working hours and drinking activity, not on concrete evidence of drunk driving behavior. It may be problematic to report a patient without any verification of wrongdoing, but it may also be unethical to wait for a disaster to happen.

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EMORY MEDICINE

Disclosure of this type of information to an employer could conceivably prevent damage to the individual and others. But it could also lead to job loss and other consequences that further harm the patient and perpetuate the alcohol abuse. As a physician, whose well-being do you prioritize?

There is also the question of consistency and avoiding discrimination. How do we decide which professions should be held to this standard? It is likely that most companies have rules—spoken or unspoken—prohibiting intoxication at work.

But when should a physician get involved and report behavior that could potentially be occurring during work time? And how do physicians avoid letting discrimination and bias influence who and at what point they report?

The two options are: 1) Look out for the common good: Report the patient’s alcohol abuse to his employer, breaking confidentiality and risking the Case presented by Empatient’s loss of a job and subsequent ily Michels, a graduate consequences, but diminishing the student in Emory’s likelihood of serious harm to the bioethics program. This patient, riders, and pedestrians. medical ethics series is 2) Maintain complete patient-probased on real Emory vider confidentiality: Don’t report cases, with some details the alcohol abuse, but work with the changed to protect patient to address the issue and make patient identities. them aware of the risk they are posing to the community.

Ultimately, upon the recommendation of ethics consultants, the provider did not report the patient, because of a lack of sufficient evidence to prove a serious and imminent threat, but did counsel him. n

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Red Sky at Night Robert Taylor, director of cardiology, captured this fiery sunset and a slice of the Atlanta skyline from the physicians’ parking deck of Emory University Hospital.