The Lucky Years: How to Thrive in the Brave New World of Health (16 page)

The Black Death peaked during the hot summer of 1665 in London. By mid-July, there were more than a thousand deaths a week, reported on handbills posted in public places to warn people that the plague was spreading. Many of the rich left the city, leaving the poor to die in droves. Shown on the following pages are three bills from that year, each of which lists the number of deaths in London for one week. The first one shows a week in February, during which one person died of plague while eighty-nine died of consumption (tuberculosis). By September, as seen in the second image, the plague killed 7,165 in one week. And by December, the third image, the numbers had declined, completing the epidemic curve of the year’s outbreak.

This was the first time in human history that a pattern was reflected in the data; you could see the plague begin its march through the city starting in the late spring, then kill scores of people during those warm summer months, and finally peter out again in the fall. In the words of my friend Jay Walker—who owns a leather-bound and vellum-paged volume of the original bills (the pages shown are from his volume) in his expansive, private Walker Library of the History of Human Imagination in Connecticut—“The good Lord isn’t plucking people out at random; he’s plucking people out on a plague curve.” From the Bills of Mortality came the notion that you can predict plague. Matters of public health can be charted, quantified, mathematized, and predicted.

The list of deaths for the week of February 7 to 14, 1665, showing just one plague death at the beginning of the Black Death.

The list of deaths for the week of September 12 to 19, 1665, showing 7,165 plague deaths during the peak of the Black Death.

The list of deaths for the week of December 5 to 12, 1665, showing 243 plague deaths during the decline of the Black Death.

We owe the actual organization and analysis of London’s vital statistics to a man named John Graunt. Many historians credit him with establishing the science of demography, the statistical study of human populations. In honor of his work, Graunt was named a charter member of England’s Royal Society, which is composed of prominent scientists.

Today we are all aware of patterns in the spread of illnesses, especially
the infectious ones. Unlike the plague, which is carried by fleas that live as parasites on rats (hence the summer peak when the fleas proliferate in the warmth), the influenza virus peaks in the winter, when people are living mostly indoors in closer proximity. But we can misinterpret our data despite much better technology than that of the Middle Ages. You see, data without context is meaningless. A few years ago, when Google tried to predict the spread of flu using its search engine, it got it wrong. By comparing traditional surveillance data with Google Flu Trends’ results, which were derived from the number of flu-related internet searches, it was shown that Google had drastically overestimated peak flu levels, and did so three years in a row.
¹³
This was yet another reminder that while high-tech flu-tracking techniques based on mining of web data and on social media can be useful, they will complement traditional epidemiological surveillance networks until the technology can fully substitute them.

The problem that Google faced was a basic foible of artificial intelligence: computers and search engines are deftly clever at tracing what people are searching for (“fever,” “flu,” “sore throat,” “chills, fever, body aches,” “symptoms of flu”), but they can’t tell if those people are actually sick. So healthy people in Seattle, for example, searching for facts about the flu and its symptoms—maybe a class of children searching for information for a school report, or someone who just heard a news report about the flu in the local media—can skew the search engine’s tracking algorithm. They are creating the wrong context for Google to do its thing. They are, put simply, the wrong messenger—unknowingly sabotaging the system because Google tags them as potential flu patients when in fact they are not and might never be that year.

Misleading messages like this are everywhere today, and the volume of health information and even health opinions out there makes it hard to know whom and what to trust. It also makes the discovery of your own context to inform your decisions all the more challenging. I’ll be helping you define your current context. But first, we must address what it means to move at the speed of health.

I personally think we are just not smart enough—and won’t be for a very long time—to feel comfortable about the consequences of changing heredity, even in a single individual.
¹

—David Baltimore, former president of Caltech and 1975 Nobel laureate in Physiology or Medicine

N
o sooner did the world realize that we could begin to edit any gene in the human genome than a group of scientists, including those who pioneered the technology, called for a worldwide moratorium on using the new technique. They argued, in an article for
Science
in 2015, that this would give us all time to understand the issues surrounding this breakthrough method fully.
²
David Baltimore was one of the paper’s authors concerned about the dangers of altering the human genome, claiming that we’re not “smart enough” to understand the potential consequences of tinkering with the very makeup of our species and artificially reshaping human genetics.

When you make changes to the genome, it means you modify human sperm, eggs, or embryos in a way that will be permanent throughout the life of that individual and then will be passed on to future generations
of biological children and their descendants. Until now, these worries were theoretical. Today, however, we are living in a brave new reality. And the future of medicine—and of you and me—rests on figuring out which technologies we should make universally accessible and which we would do well to safeguard from widespread use. This safeguarding is not easy; the warning from David Baltimore’s group came days after a group of Chinese scientists reported that they were already editing the genomes of human embryos.

The fact that there’s no reliable governance over technologies as important as DNA screening and DNA editing is emblematic of the fact that most people are living purely in reactive mode when it comes to their health, and not in preventive mode. This is a huge problem in the modern age, when a person can go from Singapore to San Francisco in a day. Epidemics such as SARS (severe acute respiratory syndrome), avian flu, Ebola, or West Nile virus, to name a few in recent memory, can spread faster than ever before. We are poorly coordinated to handle a real and sudden catastrophe if one hit. We fail to think toward the future and make reasonable predictions based on known parameters.

In the past few years, there’s been a surge in parasitic brain-eating amoebas infecting people who swim in warm lake waters. Two children died in 2012 after swimming in Minnesota’s Lily Lake, near the Twin Cities, and one California woman succumbed to a fatal brain infection caused by the parasite in 2015. This particular type of amoeba can only thrive in warm conditions, and is typically found in Texas and Florida. But given the warming trends in recent years, the waters have changed—and so have their inhabitants. As a society, we need to be better at predicting such shifts so we can act quickly when unfamiliar foes emerge. The Department of Homeland Security was founded quickly after the September 11, 2001, attacks to help keep us one step ahead of the terrorists. It’s time we established a Department of Homeland Health, whose sole purpose is to predict and prepare for all the biological threats out there—many of which are currently not within the purview of the Department of Health and Human Services or the Centers for Disease Control and Prevention.

Conversations about how to govern health in the future must happen now, from establishing the ethics around gene editing to setting up more reliable strategies for predicting pandemics. Once we make those decisions, we might be able to help people like Sharon Bernardi and the seven children she lost, six of whom died within hours or days of birth and one who lived until he was twenty-one.

Sharon Bernardi wasn’t unlike many young women hoping to become a mother and have a family.
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But her first three pregnancies, all of which were uneventful, resulted in babies who died soon after they were born. It was discovered that their fragile little bodies mysteriously began to accumulate acid in their blood upon their birth that caused their swift departure. At the time, no one could explain it. This was when Sharon’s mother shared that she, too, had lost three babies to stillbirth before Sharon, her only surviving child.

It took Sharon and her husband a long time to get over the loss of their first baby, which came as a shock given how good she’d felt during the pregnancy and how normal the birth was. But then it happened again and again. Every time Sharon got pregnant, she prayed the horror wouldn’t repeat. Although her doctors began to have a feeling that the deaths were connected somehow, they couldn’t make sense of it. An early genetic investigation led nowhere. They did, however, note that members of Sharon’s extended family had also lost children—a breathtaking eight children in all beyond Sharon’s. And then came Edward.

Edward was Sharon’s fourth attempt to have a healthy biological child whom she wouldn’t have to bury prematurely. This time the doctors took a more cautious, prepared approach to the delivery. Edward received drugs and blood transfusions for his first forty-eight hours after being born. This was to prevent the lactic acidosis—the blood poisoning—that had killed his siblings. And he survived. Five weeks later, Sharon and her husband, Neil, took Edward home to Sunderland in the United Kingdom for Christmas. He developed normally, reaching
all his early milestones: he sat up, he crawled, and at fourteen months, he started to walk. Overall, he was a happy, active boy, but his mother did have to care for him a lot and he didn’t seem as healthy as other kids his age did.

The signs of serious trouble started when Edward was about two. That’s when he began to fall down repeatedly when trying to walk. And then he started having seizures, which helped doctors arrive at the root source of the problem with all of Sharon’s children. In 1994, when Edward was four, doctors finally diagnosed him with Leigh’s disease, a disorder that affects the central nervous system. It leads to a variety of challenges such as loss of head control and motor skills, learning difficulties, and impairment of breathing and kidney function. Most children don’t live long with Leigh’s disease, as it progresses rapidly. Doctors told Sharon that her son would probably not make it to kindergarten. She learned that Edward would have intervals of remission amid periods of illness that could happen suddenly. And his seizures were especially worrisome, for they could last for days, and doctors thought he’d die during one of these prolonged episodes.

Sharon and Neil continued to try for a healthy baby. But there’d be no such luck. She gave birth to three more children, but none lived beyond the age of two. After each death, Sharon and Neil comforted themselves by saying the death was “a one-off.” Perhaps it’s just human nature to think like that, especially when you’re aching for a healthy child. But after their last child had a heart attack and died in 2000, they stopped pursuing another pregnancy. After all, they still had Edward, and he’d already lived long past what the doctors had predicted.