Got a Virus? Its Name Matters More Than You Think
Dr. Adalja is focused on emerging infectious disease, pandemic preparedness, and biosecurity. He has served on US government panels tasked with developing guidelines for the treatment of plague, botulism, and anthrax in mass casualty settings and the system of care for infectious disease emergencies, and as an external advisor to the New York City Health and Hospital Emergency Management Highly Infectious Disease training program, as well as on a FEMA working group on nuclear disaster recovery. Dr. Adalja is an Associate Editor of the journal Health Security. He was a coeditor of the volume Global Catastrophic Biological Risks, a contributing author for the Handbook of Bioterrorism and Disaster Medicine, the Emergency Medicine CorePendium, Clinical Microbiology Made Ridiculously Simple, UpToDate's section on biological terrorism, and a NATO volume on bioterrorism. He has also published in such journals as the New England Journal of Medicine, the Journal of Infectious Diseases, Clinical Infectious Diseases, Emerging Infectious Diseases, and the Annals of Emergency Medicine. He is a board-certified physician in internal medicine, emergency medicine, infectious diseases, and critical care medicine. Follow him on Twitter: @AmeshAA
It's a familiar scenario: You show up at the doctor feeling miserable—sneezing, coughing, lethargic. We've all been there. And we've all been told the same answer: we're suffering from "a virus."
Failing to establish a specific microbial cause undermines the health of individual patients—and potentially the public at large.
Some patients may be satisfied with that diagnosis, others may be frustrated, and still others may demand antibiotic treatment for a bacterial infection that is usually not even present. As an infectious disease doctor who specializes in pandemic preparedness, I detest using the catch-all "virus" diagnosis for a range of symptoms from common colds to life-threatening pneumonias to unexplained fevers. Failing to establish a specific microbial cause undermines the health of individual patients—and potentially the public at large.
Confirming a specific diagnosis to determine which virus is behind those nasty symptoms is not just an academic exercise. The benefits are plentiful. Patients can forego antibiotic treatment, possibly benefit from antiviral treatment, understand their illness, and be given a prognosis. Additionally, if hospitalized, patients with certain viral infections require specific types of precautions so as not to spread the virus within the hospital.
Another largely undervalued benefit of such an approach is that it allows experts to begin assembling an arsenal of tools that might stave off a global health catastrophe. With severe pandemics, such as the 1918 influenza pandemic that killed 50 to 100 million people, it can be challenging to predict which of the myriad microbial species (bacteria, viruses, fungi, parasites, prions) will be the most likely cause. Many different approaches to prediction exist, but there is a general lack of rigorous analysis about what it takes for any microorganism to reach the pantheon of pandemic pathogens. My colleagues and I at the Johns Hopkins Center for Health Security recently developed a new framework to understand the characteristics of pandemic pathogens.
One of our major conclusions is that the most likely pandemic pathogen will be viral and spread through respiratory means. Viruses rise to the top of the list because, when compared to other types of infectious agents, they have several features that confer pandemic potential: they mutate a lot, the speed of infection is rapid, and there are no broad-spectrum antivirals akin to broad-spectrum antibacterial agents. Contagion through breathing, coughing, and sneezing is likely because it is much more difficult for standard public health measures to extinguish respiratory spread agents compared to other routes of transmission like food, body fluids, or mosquitoes.
With this information, physicians and scientists can begin taking actions to prevent spread of the infection by developing vaccines, testing antiviral compounds, and making diagnostic tests for concerning viruses.
Many of the viral families that could pose a pandemic threat are very common causes of upper respiratory infections like influenza, the common cold, and bronchitis. These viruses cause a wide range of illnesses from mild coughs to serious pneumonias. Indeed, the 2009 H1N1 influenza pandemic virus was discovered in San Diego in a child with very mild illness in whom viral diagnostic testing was pursued. This event highlights the fact that such diseases are not only found in exotic locations in the developing world, but could appear anywhere.
Understanding the patterns of respiratory virus infections -- how frequent they are, which strains are predominating, changes in severity of disease, expanding geographic range -- may provide a glimpse into the first forays of a new human virus or an alert to changing behavior from a well-known virus. With this information, physicians and scientists can begin taking actions to prevent spread of the infection by developing vaccines, testing antiviral compounds, and making diagnostic tests for concerning viruses. Additionally, alerts to healthcare providers will provide greater situational awareness of the patterns of infection.
So, the next time you are given a wastebasket diagnosis of "viral syndrome," push your doctor a little harder. In 2018, we have countless diagnostic tests for viral infections available, many at the point-of-care, that too few physicians use. Not only will you be more satisfied with a real diagnosis, you may be spared an unnecessary course of antibiotics. You can also rest assured that having a name for your virus will help epidemiologists doing a very important job. While we have not yet technologically achieved the famed Tricorder of Star Trek fame that diagnoses everything with a sweep of the hand, using the tools we do have could be one of the keys to detecting the next pandemic virus early enough to intervene.
Dr. Adalja is focused on emerging infectious disease, pandemic preparedness, and biosecurity. He has served on US government panels tasked with developing guidelines for the treatment of plague, botulism, and anthrax in mass casualty settings and the system of care for infectious disease emergencies, and as an external advisor to the New York City Health and Hospital Emergency Management Highly Infectious Disease training program, as well as on a FEMA working group on nuclear disaster recovery. Dr. Adalja is an Associate Editor of the journal Health Security. He was a coeditor of the volume Global Catastrophic Biological Risks, a contributing author for the Handbook of Bioterrorism and Disaster Medicine, the Emergency Medicine CorePendium, Clinical Microbiology Made Ridiculously Simple, UpToDate's section on biological terrorism, and a NATO volume on bioterrorism. He has also published in such journals as the New England Journal of Medicine, the Journal of Infectious Diseases, Clinical Infectious Diseases, Emerging Infectious Diseases, and the Annals of Emergency Medicine. He is a board-certified physician in internal medicine, emergency medicine, infectious diseases, and critical care medicine. Follow him on Twitter: @AmeshAA
When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
A sleek, four-foot tall white robot glides across a cafe storefront in Tokyo’s Nihonbashi district, holding a two-tiered serving tray full of tea sandwiches and pastries. The cafe’s patrons smile and say thanks as they take the tray—but it’s not the robot they’re thanking. Instead, the patrons are talking to the person controlling the robot—a restaurant employee who operates the avatar from the comfort of their home.
It’s a typical scene at DAWN, short for Diverse Avatar Working Network—a cafe that launched in Tokyo six years ago as an experimental pop-up and quickly became an overnight success. Today, the cafe is a permanent fixture in Nihonbashi, staffing roughly 60 remote workers who control the robots remotely and communicate to customers via a built-in microphone.
More than just a creative idea, however, DAWN is being hailed as a life-changing opportunity. The workers who control the robots remotely (known as “pilots”) all have disabilities that limit their ability to move around freely and travel outside their homes. Worldwide, an estimated 16 percent of the global population lives with a significant disability—and according to the World Health Organization, these disabilities give rise to other problems, such as exclusion from education, unemployment, and poverty.
These are all problems that Kentaro Yoshifuji, founder and CEO of Ory Laboratory, which supplies the robot servers at DAWN, is looking to correct. Yoshifuji, who was bedridden for several years in high school due to an undisclosed health problem, launched the company to help enable people who are house-bound or bedridden to more fully participate in society, as well as end the loneliness, isolation, and feelings of worthlessness that can sometimes go hand-in-hand with being disabled.
“It’s heartbreaking to think that [people with disabilities] feel they are a burden to society, or that they fear their families suffer by caring for them,” said Yoshifuji in an interview in 2020. “We are dedicating ourselves to providing workable, technology-based solutions. That is our purpose.”
Shota Kuwahara, a DAWN employee with muscular dystrophy. Ory Labs, Inc.
Wanting to connect with others and feel useful is a common sentiment that’s shared by the workers at DAWN. Marianne, a mother of two who lives near Mt. Fuji, Japan, is functionally disabled due to chronic pain and fatigue. Working at DAWN has allowed Marianne to provide for her family as well as help alleviate her loneliness and grief.Shota, Kuwahara, a DAWN employee with muscular dystrophy, agrees. "There are many difficulties in my daily life, but I believe my life has a purpose and is not being wasted," he says. "Being useful, able to help other people, even feeling needed by others, is so motivational."