Exploring the Waves for New Medical Knowledge
Researchers in eastern North Carolina are culling the waters of the coast to find ingredients for new drugs and treatments for disease.
By Whitney L.J. Howell
Think about the ocean, and visions of whales, shellfish and the occasional starfish might pop to mind, not medical therapeutics and advancements in drug delivery. But with new research, the waves that crash on North Carolina’s coast are bringing innovative strategies and tools for improving health.
Together, researchers from the University of North Carolina-Wilmington and East Carolina University’s Brody School of Medicine are investigating how microorganisms found in ocean waters could improve the performance of existing medications, such as drugs for diabetes, cancer and heart disease.
“There’s a new class of compounds based on marine life that can get inside cells and show the cell’s permeability,” said David Brown, an ECU cardiac physiologist and associate physiology professor involved in the partnership.
Brown said UNCW researchers know the ocean side of the equation, whereas his group has studied compounds that can potentially be used to create designer medicines that get into cells and function better.
“Where UNCW’s expertise stops … is where we pick up,” he said.
The partnership, which still awaits final funding approval, formed in response to a call from the University of North Carolina Board of Governors for game-changing research between UNC system institutions that could spawn new approaches to treating disease.
Sharing work & benefits
Any research successes borne from North Carolina’s 300 miles of coastline and estuaries would likely be further supported by the UNCW-based Marine Biotechnology in North Carolina program and the nonprofit Wilmington-based Marine Bio-Technologies Center of Innovation. The Bio-Technologies Center, bolstered by a $2.5 million grant from the N.C. Biotechnology Center, is charged with helping shepherd discoveries into products and processes.
The marine life component of this collaboration comes from the lab work of UNCW Center for Marine Science director Dan Baden, who has studied red tide, the algae bloom known for killing large fish populations by paralyzing their central nervous systems.
Baden’s team identified a microorganism capable of crossing a cell’s outer protective layer – the membrane that acts as a gatekeeper, only letting select substances in and out of cells.
His team dubbed these microorganisms “escortins” because they can escort materials through that natural cellular fence, depositing them at a specific target. Escortin™ is already on the market as a cancer-drug delivery tool. Test results showed it delivers cancer medications to cells within minutes, compared to other drug-delivery systems that can take up to a day to be effective.
Work is underway for additional safety and efficacy trials, as well as clinical trials, to test whether Escortin can be used in other ways, Baden said.
Escortin could be given alongside other drugs, said Baden, who is also a UNCW marine sciences professor.
“If we can bind the escortins to a drug of interest at ECU, then we have the potential to develop a pairing where our molecules carry medications across the membrane efficiently,” he explained. He called escortin “a molecular carrier that could potentially have ubiquitous importance well past the end of all our careers.”
Delivering a guarantee
At ECU, Brown’s research has focused on mitochondria, the structures in cells that convert food into energy. He calls mitochondria the key to medication success.
Brown has focused on the mitochondria inside heart cells, how they affect heart disease and irregular heartbeats and how they repair other malfunctioning mitochondria. When cells are diseased, he said, mitochondria don’t work well.
Because of the cell’s outer membrane, there hasn’t yet been a definitive way to get drugs to the mitochondria in order for them to heal and return to normal functioning.
“Many times, there’s no guarantee a medicine will get into the cell that can benefit from it,” Brown said. “There’s no way to be absolutely sure [a medicine] gets to the right place.”
Escortins create that guarantee for mitochondria, Baden said, taking medications through the cell’s outer membrane.
North Carolina waters bring healing
That targeted drug delivery could have a significant impact on adults living near both institutions.
According to 2010 data from the North Carolina State Center for Health Statistics, nearly 13 percent of adults in eastern North Carolina – the highest rate in the state – live with Type 2 diabetes. Data from the Eat Smart Move More NC initiative also revealed between 63 and 68 percent of adults in the same area are overweight or obese.
“Mitochondria in diabetics aren’t good at burning fuel for many reasons,” ECU’s Brown said. “If we can use the ocean to help design treatments, then there’s huge potential for treating the disproportionately high population of diabetics and people with metabolic illness.”
The escortin-medication relationship could also improve the efficacy of heart medications, Baden said. Being able to deliver heart medications to patients who’ve had a heart attack or stroke in a timely manner can potentially decrease avoidable deaths, an important goal in eastern North Carolina, a region known as the “buckle” of the “stroke belt.”
The state’s 300-mile coastline presents the universities with a wealth of discovery opportunities, said Deb Mosca, the Bio-Technologies Center’s chief executive and a microbial geneticist who studies the genetics of microorganisms.
UNCW researchers are already deeply involved in culling the ocean for plants and animals that could benefit human health. Once they find a new organism with intriguing characteristics, they clone it, eliminating the need to harvest more and potentially disrupt the ocean’s ecosystem.
In doing so, Baden said, investigators are looking for new aspects of genetics and chemistry that haven’t been seen before.
“If you combine ECU’s drugs with our molecules, we’ve created new intellectual property that can extend the life of patents and add new value. It’s a scaffold for us to build upon,” UNCW’s Baden said. “Translational science – applying research in a real-world way – earns money from tax dollars and gives back to the American people.”
The process can also work in reverse, he said. If researchers know there’s a need for a certain type of medication that functions in a particular way, they can work toward finding a marine biotechnology solution to the problem. And that could create greater economic stability in the region by bringing new tools, collaborations and science jobs to eastern North Carolina, fueling further economic development.
UNCW is already on that path with its new translational science building, funded by the U.S. Department of Commerce and National Institute of Standards and Technology. The 69,000-square-foot space is the first of its type in the region, and it brings together, under one roof, researchers from a variety of scientific fields, making professional cooperations even easier.
“It’s a resource for North Carolina biotechnology, the UNC system and the state that goes beyond just the faculty and institutions working together – it includes students,” Baden said. “It’s about coming into a multidisciplinary, collaborative environment and developing relationships through big science, business and working with the right people to combine expertise and experiences to do things that weren’t possible before.“
Dense Development Would Harm Air in NC’s Triangle, Study Finds
New research from UNC-Chapel Hill challenges the new orthodoxy that dense urban development is better for the health of people living there.
By Gabe Rivin
“Smart growth” may not be so smart after all.
According to a recent study, North Carolina’s Triangle, if developed more densely today, would be home to spikes in harmful air pollution that would endanger the region’s residents.
The study, published in December in the peer-reviewed journal Risk Analysis, came to a counterintuitive finding: Denser development would slightly reduce the Triangle’s air pollution on a regional level, but at a more local level it would expose a greater number of citizens to “hotspots” of particulate matter, a harmful pollutant.
Dense development is an overarching goal for many city planners, who see it as a solution to sprawling urban landscapes like Raleigh. Sprawling development, they say, is largely responsible for car dependency, which reduces physical activity and increases air pollution, including the greenhouse gas carbon dioxide.
Yet a cross-disciplinary team from UNC-Chapel Hill and NC State University is challenging this orthodoxy.
“Our suggestion is not necessarily that density is wrong,” said Daniel Rodriguez, a professor at UNC’s department of city and regional planning and a coauthor of the study, “but that in itself, in isolation, it’s probably not going to be beneficial for people.”
According to the study, a denser Triangle in 2010 would have meant more citizens living near car traffic-heavy corridors. And that would have meant more citizens breathing in high levels of particulate matter.
Particulate matter is a complex mixture of small particles and liquid droplets, made up of acids, chemicals and metals, among other matter, according to the U.S. Environmental Protection Agency. Smaller particles develop when cars and other pollution sources emit gases into the air. The EPA says particles whose diameters are 10 micrometers or less – a human hair is about 50 micrometers – can deeply penetrate human lungs, potentially causing heart attacks or lung disease, among other problems.
Some urban planners say that dense development can limit air pollution since it encourages walking and biking. But the UNC researchers reached a different conclusion.
They argue that if the Triangle had been more densely developed in 2010, 65 people would have died from breathing particulate matter. In comparison, a model of pollution in the Triangle found 47 people likely died as a result of breathing particulates in that year.
A very sprawled development, on the other hand, would slightly increase regional levels of particulate matter. But because the pollution would be more dispersed over a wider area, only an estimated 31 people would die from breathing pollutants, compared to the model of the actual Triangle in 2010, the study found.
A novel trio of models
To reach their conclusion, the researchers relied on a system of modeling that they believe is the first of its kind.
First, the researchers modeled three scenarios: the density of the actual Triangle in 2010; a more compact, dense version of that “base” scenario; and a sprawling version of the base scenario.
The researchers then modeled likely traffic patterns for each, which they used to predict air pollution. Finally, the researchers funneled this information into a health model, which estimated the resulting human health effects.
This linking together of public health and urban planning is relatively rare, despite the two fields’ shared history, Rodriguez said.
“Urban planning emerged from urban health issues,” he said. “Back in the late 1800s, an understanding of access to water as a source of potential cholera in London led to the first sort of GIS urban maps and zoning.”
But while the two fields were intertwined, that began to change in the 1930s and ’40s, as public health research focused more on individuals’ health and city planners focused more on landscape architecture and urban design. Only since the 1990s have the two begun to overlap again, Rodriguez said.
Still, planners tend mainly to consider the environmental effects of a development – say, the effect a shopping mall will have on nearby wetlands. They often don’t consider the effects their projects will have on human health using the concept of formal health impact assessments, Rodriguez said.
Yet as the two fields – public health and urban planning – increasingly overlap, that may need to change, according to the researchers.
The need for a ‘menu of policies’
Theodore Mansfield, the study’s lead author and a Ph.D. student at UNC, said there’s an important discussion to be had about the costs and benefits of city living.
“There are a lot of great things that cities do,” he said. “But at the same time, the concentration of all those activities in a small space can have some negative health impacts.”
Density offers many benefits, like an increased ability to provide mass transit, Rodriguez added. But it isn’t necessarily a boon for public health.
“We need to have a menu of policies that are complementary and synergistic,” he said.
Those might include car-free zones in urban centers, a popular feature in Scandinavian cities, and electrified public transit, he said.
The study authors add that urban planning and transportation planning – much of which takes place in government agencies – should rely on formal health impact assessments in order to understand a large-scale project’s effects on the public’s health.
In North Carolina’s state government, that’s still a goal for the future.
Steve Abbott, a spokesman for the state’s Department of Transportation, said that conducting a health assessment for a project “is a consideration” at the department, but that “to say it’s done all the time would not be accurate.”
“However,” he added, “as we move into the future and continue to develop our planning procedures, it will become a more standard consideration and is definitely something we will better integrate into our plans.”
The limits of modeled data
Mansfield admitted that the study’s findings need to be considered with caution.
In addition to the limitations inherent to modeled data, the study’s models produced a broad range of results, he said.
The study’s models may have predicted 65 deaths for a dense Triangle. But those numbers could have varied dramatically, the models also found. In fact, deaths could have been as few as only six or as many as 220, a range large enough to call into question the study’s conclusions.
The authors also admit that their study did not consider some health benefits that accrue from dense development, such as walking.
Those benefits can be big, according to Julian Marshall, a professor of environmental engineering at the University of Minnesota and an expert on the topic.
“When you’re looking at health impacts of the built environment, air pollution and physical activity both matter,” he said. In fact, the benefits of increased exercise could outweigh the drawbacks of increased air pollution, he added.
But that also requires some qualification, he said. A neighborhood may be densely developed, but that doesn’t necessarily mean it’s walkable. The latter characteristic can result from an area that’s safe and has good sidewalks, for example.
“Are there stores to walk to?” he said. “If there’s no grocery store, then you can’t walk to the grocery store by definition.”
Latino Newborns May Be at Risk Due to Immigration Law Fears
Regulations that give local law-enforcement officers the authority to act on federal immigration laws could have a chilling effect on the use of health care services within Hispanic communities.
By Whitney L.J. Howell
The health of North Carolina’s Hispanic newborns could be at risk from an immigration law.
The federal Immigration and Nationality Act – the same law that led to a racial profiling lawsuit against the Alamance County Sheriff’s Office in 2012 – could also be having a negative impact on the health of unborn babies in North Carolina’s Hispanic communities, according to new research from Wake Forest University.
According to researchers from Wake Forest’s School of Medicine, the heightened fear of deportation generated by this and other laws, in addition to Latinos’ lack of understanding of their rights under immigration laws, has played a role in the unwillingness of North Carolina’s pregnant Hispanic women to seek out the medical services they need.
The study reveals these women are less likely than women of other ethnicities to receive timely and sufficient prenatal care.
“Regardless of the status of the mother or father, a child born here is an American citizen under the Constitution, and we would hope that all children born in this country are healthy and can avoid preventable illness,” said Mark Hall, a Wake Forest law professor with expertise in health care law and public policy who participated in the study. “So it’s certainly important that all expectant mothers receive adequate prenatal care.”
Delaying prenatal care
But that’s not what’s happening, Hall said.
Based on a data review and personal interviews conducted in 2012, Hall and his fellow researchers discovered approximately 30 percent of Hispanic women in North Carolina don’t start prenatal care until after the first trimester.
The American Congress of Obstetricians and Gynecologists recommendations suggest the initial visit occur between eight to 10 weeks. In comparison, according to the same study data, only 10 percent of non-Hispanic women delayed receiving care. Additionally, 30 percent of Hispanic women – versus 8 percent of all other women – received less than half of the 14 doctor examinations recommended in ACOG guidelines.
Unfortunately, said Angeline Echevarria, executive director of El Pueblo, a Latino community-advocacy group, North Carolina’s Hispanic residents often forego preventive health care services out of fear associated with their citizenship status.
“We’ve found that when community members feel they’re being singled out or targeted by law enforcement, it puts a damper on their willingness to seek health services that aren’t associated with any type of emergency,” she said. “We see this especially in rural areas where public transportation isn’t really an option. A lack of good mobility options limits their willingness to drive around and take a chance for what they deem as unnecessary care. So they put off preventive services, even though we don’t recommend it.”
Although N.C. Healthy Start reports first-generation Hispanics maintain the state’s lowest infant mortality rate – 3.7 per 1,000 live births – pregnant women in this community still face risks if they don’t receive proper medical services. Inadequate prenatal care has been linked to low birth weight; neural tube defects, such as spina bifida; congenital illnesses, impaired heart and brain development; and increased infant mortality. Newborns who don’t receive proper prenatal care are 40 percent more likely to die within the first month of life, according to the Guttmacher Institute.
It’s also possible, Hall said, that this group’s rate of inadequate prenatal care could create a significant public health issue for North Carolina. Based on 2013 U.S. Census Bureau estimates, there are more than 875,000 Hispanics in North Carolina, nearly 9 percent of the state’s population.
Effects of the law?
Using vital records data from 2012, six focus groups, and 17 in-person interviews, the study analyzed how expectant Hispanic women accessed and used prenatal care services for nine months before and nine to 18 months after the Immigration and Nationality Act went into effect. The researchers reviewed data from seven counties that adopted the law and seven that didn’t.
Under the INA’s section 287(g), U.S. Immigration and Custom Enforcement can effectively deputize state and local agencies, giving them the authority to uphold federal immigration laws during routing law-enforcement activities. The U.S. Department of Justice cited traffic stop data to argue that the Alamance County sheriff’s department was being overly aggressive in targeting Latinos under the aegis of the INA.
In 2012, federal officials terminated the county’s participation in the program. This past year, Terry Johnson, the Alamance County sheriff, was tried in a federal court on charges of discriminatory policing. A judge has yet to rule in the case.
Researchers can’t say definitively whether immigration regulations caused the drop in access of prenatal care services, Hall said, but the data did indicate fewer women sought care after its enactment than before.
In the interviews, pregnant women frequently reported a lack of insurance contributed to their foregoing prenatal care.
Data from the Henry J. Kaiser Family Foundation reported 43 percent of N.C. Hispanics don’t have health insurance. This amount mirrors the Pew Research Center statistic of 43 percent of Hispanic 18-to-64-year-olds nationally who are without health insurance.
For some women, transportation was an issue, Hall said. Many were concerned they would be pulled over en route to the doctor’s office for a routine traffic violation and have their immigration status discovered. This is what happened in Alamance County, where a review of traffic stops showed deputies from the sheriff’s department were more likely to stop Latinos for minor traffic violations, such as riding without a seat belt.
Another group of women in the study feared the doctor would report them to immigration officials.
To combat these concerns, North Carolina’s public policy and medical leaders must improve communication around patients’ rights and access to care, Hall said. Greater clarity about whether immigration enforcement can even affect medical care – medical providers are neither required nor expected to check immigration status when providing services – could also be helpful.
In addition, he said, knowing there’s no real risk of being reported by the doctor’s office could encourage more women to find some type of reliable transportation to their appointments.
Ultimately, Hall said, improving prenatal care for Hispanic women could have a positive impact on North Carolina’s health overall.
“As a society, we have concern over everyone’s health, particularly those of children. If reluctance or fear affects the willingness to get immunizations, it could impact communicable diseases,” Hall said. “In general, there’s a larger implication. We need to think beyond just enforcing immigration policy to the labor and economic impacts on families, as well as the public health impacts that aren’t fully recognized.”
Preventing Burnout in Doctors Young and Old
Many health care practitioners find themselves overwhelmed and depressed, yet there are few outlets for them to get help. A program at UNC-Chapel Hill is targeting doctors who are burnt out.
By Whitney L.J. Howell
Kara McGee knew something was wrong when she felt all the excitement over her job and empathy for her patients draining away.
“I wasn’t missing things, but it was definitely a more ‘here we go again’ attitude,” she said. “I didn’t want it to happen, but I was disconnecting from what I was doing. It felt like it was protective, like it was my way of coping with what I was seeing on a daily basis. I felt very out of control.”
At the time, McGee was a physician assistant, working in a pediatric surgery and intensive care unit in Miami. Being surrounded by so many children who were dealing with such intense medical issues made it difficult for her to concentrate on the patients who had good outcomes. Instead, McGee said, she dwelled on those who suffered from long illnesses and died.
So she quit. McGee walked away from patient care for three years. During that time, she went back to school to earn a master’s degree in public health, but eventually returned to working with patients after realizing she missed it. It’s different now though. Today she works in HIV medicine at Duke University Medical Center’s Division of Infectious Diseases.
“Now, I can develop long-term relationships with my patients, and that’s extremely rewarding,” McGee said. “In the ICU or emergency department, there’s either a poor outcome or you don’t know what happens because patients go on their merry ways. It’s the relationship building that’s so gratifying.”
Based on existing research, McGee isn’t alone. Medical professionals are more likely than people in other professions to experience burnout. Studies have looked at burnout prevalence among physician assistants and other health care providers. But until now, there’s one group that’s gone without much examination: medical residents, the physicians-in-training.
According to new work conducted by researchers at the University of North Carolina-Chapel Hill though, as many as 75 percent of medical residents experience at least one time period of burnout, and roughly 50 percent identify themselves as burned out at any given time.
“This is an extremely common problem. The academic medicine centers responsible for training our doctors are under extreme pressure these days,” said Samantha Meltzer-Brody, the lead study investigator. “The entire business of academic medicine and the structure of it are built upon a system that no longer works, and no one is entirely sure what to do about it.
“Residents are on the front lines of providing the care, and I think they feel it acutely.”
Treating the malaise
Physician burnout is a national problem that, in some cases, contributes to an even greater concern: physician suicide. According to Pamela Wible, a family physician and physician-suicide expert, approximately 400 doctors take their own lives annually, and many leave behind letters or evidence of their daily mental stresses.
Meltzer-Brody’s goal is to identify, treat and diffuse those mental stresses and other mental health concerns before residents reach that level of despair.
Increased patient demands, battles with insurance companies, malpractice concerns and medical school debt are known contributing factors to physician burnout. But, according to Meltzer-Brody, who also directs the Perinatal Psychiatry Program in the UNC Center for Women’s Mood Disorders, residents face additional, more contemporary challenges. To identify the residents’ stress mix, she conducted an online survey with 310 UNC HealthCare residents.
In May and June of 2014, she collected survey results from residents in various specialties, including surgery, internal medicine, pediatrics and psychiatry. The questions queried about interpersonal situations, fatigue, depression and feelings around patients who died. Meltzer-Brody noted residents likely had additional stress during this time because they were training to use the UNC Healthcare system’s new electronic health record system, Epic.
Through this survey and her ongoing mental health program for physicians, “Taking Care of Our Own,” Meltzer-Brody has put North Carolina at the forefront of combating this phenomenon. This UNC-based, first-of-its-kind initiative is specifically designed to treat physician burnout by providing education, confidential support services, advice and mental and physical health referrals.
Within its first year, from 2012 to 2013, the program grew by 200 percent.
What residents are feeling and facing
North Carolina’s medical residents face a challenge that could make resident risk of burnout more severe, Meltzer-Brody said.
“We have a growing population that is very diverse. North Carolina is the fifth largest state taking care of Latinos, many of whom are undocumented and use the emergency room as their first point of care,” she said. “The UNC emergency room is exploding as we try to meet the health needs of this influx of people.”
Rural physicians face this same challenge, often having to provide emergency room and hospital coverage in addition to their clinic duties. A significant cadre of physicians and residents in North Carolina fall into this category. According to the N.C. Department of Health and Human Services, 150 to 160 physicians were recruited annually for the past six years to serve the state’s rural populations.
At the same time that there are more patients in waiting rooms, there are fewer residents on call due to a 2003 federal regulation that limited residents to an 80-hour workweek in an effort to create more well-rested residents and increase patient safety.
“The thought was that if residents were more rested, it would decrease medical errors, as well as improve their mental well-being,” Meltzer-Brody said. “Neither has happened. We’re not seeing reduced medical errors, and burnout is at an all-time high.”
Additionally, academic medical centers haven’t increased their resident numbers or hired other personnel, leaving a smaller group of residents responsible for an ever-growing body of work. All these factors contribute to increased daily stress, she said.
Reports from the Physicians’ Foundation revealed that these issues led to 81 percent of doctors finding themselves overextended and half being unlikely to recommend a medical career.
Together, these factors leave little time for team building or mentoring, eroding the sense of community that once existed between residents, attending physicians and other health care personnel, Meltzer-Brody said. Losing that cooperative spirit can fuel a significant burnout feeling.
“What these residents experience isn’t what brought them into being doctors,” she said. “There’s a big disconnect between what’s being emphasized in medical school and what’s happening in actual practice.”
Whatever the symptoms, McGee recommended residents or other health care professionals identify someone with whom they can discuss both their physical and mental reactions to work-related stress.
“I think seeking help from employee-assistance groups is an excellent way to cope with the stress you experience as a medical professional,” she said.
In addition, she suggested individuals experiencing burnout take time for self-reflection. If someone’s ability to provide appropriate, compassionate care is compromised, then it’s time to take a break and try something different professionally.
Ultimately, the biggest force behind burnout among medical professionals is the industry’s culture, McGee said, and practitioners need an outlet.
“It’s just like with professional athletes who get injured and play anyway,” she said. “Part of what you do in having to deal with the stress and the patient care is simply putting one foot in front of the other. It’s the culture of medicine that just comes with the territory.”
Mapped Data Offers Insights about Water Quality and Birth Defects
Aggregated data about metals in North Carolina’s well water indicate some disturbing connections between birth defects and well water in some parts of the state.
By Gabe Rivin
First, pull up a state map. Next, gather six years’ worth of childbirth records from across the state. Top it off with a surplus of data about the state’s drinking-water wells.
Confused what to do next?
If the connection isn’t immediately clear, you might want to ask Rebecca Fry, a professor at UNC-Chapel Hill and an expert in the harms wrought by heavy metals, such as arsenic and cadmium. Fry, along with researchers from UNC and the state’s government, recently combined these disparate data sets while studying the connections between well water and birth defects.
What they found, Fry said, was striking.
Water wells throughout the center of the state are saturated with manganese, they found. And babies in North Carolina were more likely to have heart defects if their mothers drank water from these manganese-rich wells.
In recent years, health researchers have increasingly turned their attention to heavy metals – such as cadmium, mercury, chromium and arsenic – particularly for their effects on unborn children. Fry and others have shown that cadmium can potentially harm newborns’ health and that the heavy metal has accumulated in mothers’ blood.
So it’s not entirely novel that a metal has been implicated in a health problem. But what is new, according to Fry, is that researchers have turned to data-rich maps to make these findings.
“Just being able to map those metals across the state is very new,” said Fry.
Mapping big data
Fry said she and her colleagues had a surfeit of data to work with.
For their study, published in September, the researchers gathered six years’ worth of childbirth data from across the state, captured by the state’s Birth Defects Monitoring Program. That program is part of the N.C. Department of Health and Human Services and keeps records on newborns’ birth defects in all 100 state counties.
The researchers gathered data from about 20,000 babies born with birth defects. As a control, they also considered about 668,000 born without defects.
The babies were born in counties in all regions of the state. And that meant that the babies’ mothers lived in counties across the state where water quality can vary dramatically from well to well.
The researchers wanted to know whether well water had anything to do with newborns’ birth defects. But they were limited, Fry said, since they couldn’t measure the mothers’ actual water consumption.
“We don’t have active environmental monitoring in everyone’s home,” she said.
So, to estimate the water that the mothers drank, the researchers instead relied on geocoding, a technique that allows different types of data to be plotted on maps.
It’s a technique that’s gaining momentum in public health research, according to Tzy-Mey May Kuo, a research associate at UNC’s Lineberger Comprehensive Cancer Center.
“This is not new, but it’s a technique that’s become popular,” she said, noting that geocoding is used in popular websites like Google Maps, whose maps are enriched with street-level images and information about businesses.
For the study’s authors, geocoding helped explain what was in the water that the mothers drank.
Using state records about well water, the researchers mapped out the different quality of the water across the state. They then combined this water data and another key data set – the locations of mothers’ homes while they were pregnant – in order to predict, on average, what sorts of heavy metals were entering the women’s bodies and potentially the bodies of their unborn children.
This complex method allowed them to answer three simpler questions: Where in the state is well water a problem, where are children being born with defects and is there a connection between the two?
The need for biomonitoring
When the data crunching was done, the picture was clear.
Manganese is highly concentrated in many North Carolina wells, the researchers found, especially in the central counties of the state, which sit above the Carolina slate belt, a cross-state geologic formation with an abundance of manganese. In fact, about 20 percent of private water wells exceeded the EPA’s suggested limit for the metal.
And the manganese appeared to be causing harm. Newborns had a higher chance of being born with heart defects if their mothers drank the manganese-rich water, the study found.
Manganese toxicity follows a basic principle: the dose makes the poison. The body needs a small amount of the metal to function properly. But excessive amounts can be harmful.
Health researchers have known since the 1800s that manganese, which is used to harden steel, can cause neurological disorders in humans who’ve had high enough doses. Its effects, in fact, can emulate those of Parkinson’s disease. Among children, it’s also suspected of causing problems with neurological development.
But while their finding is worrisome, the researchers admit that their study had several significant limitations.
Though their sample size was large, the researchers were hampered by a lack of data about the mothers’ actual water consumption.
The study’s authors say their lack of individual measurements points to the need for biomonitoring, or chemical measurements of study participants’ bodies. But North Carolina currently doesn’t have any biomonitoring programs for pregnant women, they add.
They also note that until 2008 state government did not require residents to test well water – and even then, the tests were only made mandatory for new wells. So while the study relied on data from 1998 to 2010, the pre-2008 data would have come from residents who chose to have their wells tested. And that could have biased the data, the researchers say.
What well users can do
The UNC and government researchers used a sophisticated method to calculate health risks for newborns. But for residents concerned about their water, the solution can be much simpler. County health departments offer tests of private water wells, including tests for a number of heavy metals, including manganese.
In Montgomery County, well tests run between $35 and $85, and can measure pesticides, inorganic chemicals and petroleum. Teresa Davis, an environmental health coordinator with the county, said that most people seek out the county’s services on their own.
“Being such a small community, people know to call the health department,” she said.
Fry said that this is a good idea since federal and state regulations don’t cover the quality of well water. Residents can also install technology to remove heavy metals if they’re having an issue, she added.
But those filters can be more expensive than conventional water filters, like those made by Brita, Fry said. One, manufactured by Apyron, removes about 92 percent of arsenic from water but costs about $500. A reverse-osmosis system made by Certex costs about $300 and removes about 86 percent of arsenic.
The N.C. Department of Health and Human Services also collects water samples from newly drilled wells.
“The wells are sampled and the resident is given a list of contaminants (if any), possible remedies for such contaminants, as well as any health risks associated with consuming the water,” said Alexandra Lefebvre, a press officer with DHHS, in an email interview. “We recommend to all new well owners to sample their well annually after the first samples are collected.”
Not Too Early or Too Late, Potty Training Timing Needs to Be Just Right
New research on the timing of potty training shows problems for pushing children too soon or waiting too long.
By Whitney L.J. Howell
The frustrating journey of toilet training a child is a struggle every parent faces. Starting kids down this path early can be tempting, but a new study from Wake Forest University found that pushing the topic too soon – or too late – can cause physical problems and lead to wetting accidents.
Children who are toilet trained prior to age 2 or after age 3 have significantly more daytime and nighttime accidents than children trained between the two ages, the study showed.
“Toilet training seems like a religious topic,” said study leader Steve Hodges, a pediatric urologist at Wake Forest Baptist Medical Center. “People can get so mad and say they trained their child at age 2 or 1, and [that] everything is fine. But training too early or late is a risk factor, and we want to prevent toileting problems in all kids with maximal effect.”
As long as a child stays in diapers, his or her bladder continues to grow in size. Being able to urinate freely increases the bladder’s fluid capacity and actually helps it learn to function more effectively, he said. Once toilet training is introduced though, that growth stops. So, according to research from the University of Oklahoma Health Sciences Center, children who toilet train earlier will automatically have smaller bladders, potentially setting them up for future toileting problems.
But the real culprit behind wetting accidents, Hodges said, is constipation. Increased fullness in the bowels presses on the bladder, making it harder for children to control the flow of urine. Over longer periods, that same fullness can also stunt the bladder’s growth, further inhibiting capacity. In addition, the muscles used to restrict bowel movements are connected to muscles that control urination; constriction can make it harder for children to learn proper toileting behaviors.
This study is the first research to connect constipation to wetting accidents in younger children.
“Across the board, most voiding complaints in kids are due to incompletely emptying the colon, not anything to do with the bladder,” Hodges said. “There’s nothing inherently bad about pooping rarely as long as everything leaves the colon. It’s when the colon doesn’t empty that we start to see bladder problems, such as daytime wetting and urinary frequency.”
In some cases, constipation occurs when a child resists parents’ efforts to introduce toilet training. Other times, outside influences, such as a new sibling, can stall a child’s progress.
Hodges’ team followed the toileting habits of 112 children aged 3 to 10 for six months. The majority were toilet trained between ages 2 and 3, and parents reported 38 percent had a history of constipation and 45 percent had experienced daytime wetting.
Although anecdotal evidence shows girls can toilet train earlier and easier than boys, Hodges’ research found being male didn’t increase the likelihood of constipation or daytime wetting.
According to the findings, the children who toilet trained before age 2 were more than three times as likely to suffer from constipation than children who trained between ages 2 and 3. Children who trained after age 3 experienced constipation seven times as often. In addition, when compared to other children, kids who trained early and late had daytime wetness nearly four times and five times as often, respectively.
These problems can frequently be overlooked, said Triangle Center for Behavioral Health clinical psychologist Rebecca Dingfelder, because parents aren’t comfortable broaching the subject with their child’s physician. Dingfelder has expertise in working with children who have toilet-training difficulties.
“A lot of problems stem from parents being embarrassed to talk with pediatricians – not about toilet training but about the constipation that might be going on,” she said. “Parents need to discuss with their pediatricians how things are going with pooping, especially if there are problems with wetting the bed or wetting at school.”
It’s important to remember, Dingfelder said, that children develop at their own paces. Currently, the N.C. Department of Health & Human Services – the agency that oversees day-care center licensures in the state – doesn’t require that children be toilet trained by a certain age in day-care or pre-school environments. However, many such facilities maintain a policy that children must be fully trained before progressing to a 3-year-old classroom.
In some cases, she said, that mandate puts unrealistic expectations on the child and family.
“If a child is cognitively and socially ready to move on, and if toileting is the only thing getting in the way, then day-cares need to cooperate with families to see how they can make it work,” she said.
For example, if day-care facilities don’t have a changing table in the older classes, then arrangements could be made for the child to return to the younger class for diaper changes.
Ultimately, Dingfelder said, she hopes Hodges’ research will relieve much of the stress and anxiety parents feel around toilet training their children as soon as possible. Toilet training isn’t a race to the finish line, she said, and parents shouldn’t feel pressure to push their toddlers too soon.
“Parents these days will say, ‘My kid will read when they read and ride a bike when they ride,’” she said. “We need the same acceptance for toilet training – that it’s OK to start later, and that it’s OK to talk about the stumbling blocks along the way.”
With Cadmium in Their Blood, Durham Women At Risk of Lower-Weight Babies
Researchers have linked cadmium to low birth weights, but they’re not sure why nonsmoking mothers have high blood levels of the heavy metal.
By Gabe Rivin
Pregnant women in Durham County have shown high levels of cadmium in their blood, a finding that researchers linked to low birth weights among those women’s children.
The findings, laid out in a new study from researchers at UNC-Chapel Hill and the University of Michigan, also found that nonsmokers tested high for cadmium, a toxic heavy metal that’s found in cigarettes.
The study builds on an earlier analysis of the same data that found cadmium in those women’s blood, but which did not examine any potential health effects of the exposure.
The findings are significant in that underweight babies are at risk of a number of health problems and sicknesses in the first days of their lives, according to the Centers for Disease Control and Prevention. Underweight babies are also at risk of longer-term health problems, such as delayed motor development and learning disabilities, the CDC says.
The study, published in October in the journal PLOS ONE, tracked a cohort of 1,027 pregnant women in Durham County from 2005 to 2010. Researchers compared blood samples from the women against their electronic medical records, which recorded their children’s birth weight.
Women with the highest blood levels of cadmium, the researchers found, were 71 percent more likely to give birth to babies with low birth weights than women with the lowest blood levels of cadmium.
The high-exposure group was defined as having at least 0.5 micrograms of cadmium per liter of blood, while the low-exposure group’s figure was at most 0.28. The national average for adults is 0.32 micrograms of cadmium per liter of blood.
The study defined babies with low birth weights as those weighing less than 2,500 grams, or about five and a half pounds.
Rebecca Fry, a UNC professor and one of the coauthors of the study, said that cigarettes were partially to blame for the high levels of cadmium in the women’s blood, since about 25 percent of the study participants were smokers.
“We know that cigarette smoke contributes to these metals levels,” she said.
But Fry said the study raised questions about cadmium exposures among nonsmokers, who made up a majority of the high-exposure group.
“One of the things we found was, the relationship between babies being born at lower birth weight was even occurring in those women who are not current, active smokers.”
A toxic heavy metal
Cadmium is hardly a new concern for health researchers. For years, researchers have shown that the heavy metal can cause a variety of health problems.
Cadmium is known to cause lung cancer and kidney damage. It can be fatal if inhaled at large enough levels. And according to some studies, the metal is linked to prostate cancer in men.
Many of those ailments have been concerns among workers in industrial plants, such as refrigeration compressor plants and battery plants.
But, as the new study found, cadmium isn’t just a concern for industrial workers – or smokers, for that matter.
In the study, smokers accounted for 156 of the women with high levels of cadmium in their blood. Yet that number was even higher for nonsmokers. The study tallied 172 women, or about 17 percent of the total cohort, who were nonsmokers but whose blood levels of cadmium were high.
Fry said that it’s unclear why nonsmokers had high cadmium levels, but she noted that the women could be exposed to it through the food they eat. The U.S. Environmental Protection Agency says that people can be exposed to cadmium from food that’s grown with phosphate fertilizers or sewage sludge.
The EPA also says that people can inhale airborne cadmium, which is emitted from coal- and oil-fired power plants, in addition to municipal plants that burn waste.
But one thing is certain: Cadmium is finding its way into women’s uteruses, and it’s worrying health researchers who study heavy metals’ effects on fetuses.
Early and longer exposure poses risks, even at low levels
Researchers haven’t always been so concerned about low levels of heavy metals in humans’ blood. Older academic literature was more focused on industrial accidents and areas in the world where people were highly exposed to metals, according to Carmen Marsit, a professor in Dartmouth College’s school of medicine.
But public-health researchers have increasingly turned their attention to the effects of long-term, low-level exposures. “We might be seeing the same kinds of effects, maybe to a lesser extent,” he said.
Marsit said that this is particularly true for the study of fetal health, a relatively new area for health research. “We’re realizing that that’s such a critical and such a risk period for when these things might have an effect,” he said.
Cells rapidly differentiate while babies are in the womb, he said, and if the normal development process is disrupted, babies can suffer from long-term health problems.
Marsit said that heavy metals like cadmium could harm fetuses in a number of ways. In some cases, they can replace iron in fetuses’ red blood cells, and in other cases they can alter fetuses’ DNA.
As for cadmium and birth weights, the heavy metal could disrupt the transfer of zinc to the fetus, retarding its growth, according to the study.
Still, according to Marsit, researchers are uncertain about some of the exact physiological mechanisms that allow for this harm. That’s especially true, he said, when researchers consider how heavy metals affect fetuses’ neurological development.
One variable to control
The new study doesn’t offer definitive answers about the nonsmokers who have high blood levels of cadmium. But for the roughly 25 percent of pregnant women who did smoke, the source of the heavy metal is easier to pin down.
Tobacco, in fact, can be a potent source of cadmium. One cigarette alone, according to the study, can increase cadmium by 0.1 to 0.2 micrograms per liter of blood.
And smoking’s harms aren’t limited to low birth weights. Smoking increases the risk of cleft lips, miscarriages and sudden infant death syndrome, according to the CDC.
A former state official, when interviewed about Fry’s and others’ previous findings about high blood levels of cadmium, said the state doesn’t have an immediate plan to take action. But one of the state’s highest priorities for prenatal care is to prevent smoking or to help women quit smoking, said Kevin Ryan, who recently stepped down as the head of the women’s and children’s health section in the N.C. Department of Health and Human Services.
Local health departments offer prenatal counseling that encourages pregnant women to quit smoking. That’s also true for clinics that offer family-planning services.
Research Campus Pursues “The Healthy Life”
According to its vision statement, the goal of the North Carolina Research Campus in Kannapolis is to become “the world’s epicenter of nutrition and disease research.”
By Whitney L.J. Howell
A small, rural town once known for pillows and sheets is an unlikely backdrop for innovative, groundbreaking nutrition and health research. But that’s just where to find the North Carolina Research Campus and its nearly 20 investigative affiliates.
Nestled in Kannapolis, this 350-acre campus, known as the NCRC, is a bustling, collaborative hub that brings together academic, industry and community partners dedicated to improving human health. It’s integrally involved with creating the city’s new brand: The Healthy Life.
“Nowhere else in the world do you have one campus that houses this many great institutions in one place,” said Lynne Scott Safrit, who leads Castle & Cooke, which oversees the NCRC’s development. “The vision from the beginning was [that] through the close physical proximity of labs, facilities and faculty you’d begin to find scientific discoveries happening in a wholly different way.”
And that’s exactly what’s occurred, Safrit said, as researchers work, eat and take breaks together daily. In fact, this collaborative spirit led NCRC founder and Dole Food Company chief David H. Murdock to commit – on top of his initial $600 million investment – a $15 million annual endowment to the David H. Murdock Research Institute. The institute houses one of the largest scientific equipment collections worldwide.
Within 30 years, this gift will equal more than $500 million for the NCRC to improve nutrition and fight chronic diseases, Safrit said.
“The Institute will really start to develop its own research mural that hasn’t been possible in the past. By increasing the funding, the hope is that DHMRI will attract a world-class leader from the scientific community,” she said. “We’ll be able to grow the science staff through this funding and bring in additional funding from other sources with similar interests in nutrition and health.”
The local impact
Announced in 2005, the NCRC revitalized Kannapolis after the textile-industry bust crippled the local economy. Recently, city leaders opted to build a new government center in the middle of campus, Safrit said. It will include a large meeting space that, once completed, will host science meetings and other conferences that were never possible before.
The influx of money and job growth has been one of the biggest impacts. By the end of fiscal year 2013, not only had the UNC universities affiliated with the NCRC amassed more than $43 million in grants but those seven academic partners together had also created 151 new local jobs.
Add in other campus collaborators, and that number jumps to nearly 1,000 employment opportunities. According to NCRC statistics, local residents filled approximately half of those jobs.
Classes aren’t held on the campus but it is possible for college and graduate students to apply for internships in five of the groups: the Appalachian State Human Performance Lab, the NCSU Plants for Human Health Institute, the Plant Pathways Elucidation Project (P2EP, a $1.9 million, first-of-its-kind program that brings college students in to study how plants impact human health), the UNC-Chapel Hill Nutrition Research Institute and the Murdock Research Institute.
For example, the MURDOCK Study, an initiative looking at genomic links across major chronic diseases, hired roughly 50 local residents to conduct outreach in schools and churches. Their charge is to ensure the public understands the study’s potential impact. The ultimate goal: using advanced genomic technologies to learn more about disease and improve prevention practices.
The Cabarrus Health Alliance, the county’s public-health agency located on the NCRC campus, is one community organization that has experienced growth as well. Like MURDOCK, it’s added 50 of those 1,000 new jobs.
“It’s unusual for a public-health agency,” said William Pilkington, CHA’s chief executive officer and public-health director. “Most agencies are cutting left and right, but we’re adding employees because we’re working with the research campus partners through the grants we’ve gone after.”
Through investigative relationships with the NCRC, CHA won grants from the Centers for Medicare & Medicaid Services, the Robert Wood Johnson Foundation, the U.S. Department of Health & Human Services and other organizations, he said. Most recently, CHA received a three-year, $3 million-a-year Institute for Research & Poverty RIDGE Center for National Food and Nutrition Assistance Research grant focused on food security and choices, consumption patterns and nutritional and diet-related health outcomes.
Consequently, the NCRC-CHA alliance is creating healthier local communities. Not only has the collaboration changed how CHA tailors diabetes information dissemination to include mobile texting and direct, in-hand distribution, but it also provides free healthy cooking classes. The underlying key to success, Pilkington said, is location.
“There’s an advantage to being on campus. People associate us with research,” he said. “If we were located in a typical health department, we’d be begging people to come and try our programs. Right now, we have a cooking class for healthy Halloween treats, and we’re over-subscribed.”
The research effect
NCRC research effects extend throughout North Carolina and beyond, but Kannapolis and its residents feel much of the initial impact, said David Neiman, director of the Appalachian State University Human Performance Lab on campus.
The lab directly touches the community, he said, because researchers share study results with participants so they can learn how stress and different food consumptions affect the body’s performance abilities.
In a recent study, for example, his lab showed bananas are equally as effective as sports drinks at fueling high-intensity workouts. Plus, they’re cheaper, and the fruit adds fiber, potassium and Vitamin C to the body. A single banana also has around 100 calories – less than half the amount in an average, 20-ounce sports drink.
“We think involving residents in research educates the community and provides funding for people,” Neiman said. “They can be proud when they see the results of our research in the media and know they were a subject in that study.”
To date, the lab, which launched in 2009, has brought in $3.5 million in industry funding, and $500,000 of that has been funneled directly into the community through stipend payments to hundreds of research participants, he said.
North Carolina A&T State University’s Center for Excellent in Post-Harvest Technologies has also incorporated local resources into its food-safety and nutrient-preservation research. The lab frequently studies the prevalence of E. coli, listeria and salmonella, bacteria known to cause food poisoning in humans.
Additionally, said lead food scientist Leonard Williams, the lab shares a five-year, $25 million grant with North Carolina State University to collect samples of the leading food-contamination bacterium norovirus from fruits and vegetables.
Most recently, the lab completed a two-year study examining the quality of locally grown produce sold at farmers markets in counties along the I-85 corridor, including Davidson, Mecklenburg, Guilford and Cabarrus counties. The results, Williams said, have been heartening.
“What’s amazing is that our produce sold at farmers markets is extremely safe. There are very low levels or low incidence of food-borne pathogens detected,” Williams said. “That means our farmers are delivering safe, wholesome supplies of fruits and vegetables to consumers.”
These findings will ultimately – and positively – impact their bottom lines and abilities to market their products, he said.
Whether the individual endeavor is economic or research, Safrit said, the NCRC is on track to bring together campus and surrounding area residents to fulfill its mission of improving human health, agriculture and nutrition.
“It’s really a community effort. We’re seeing people buy into the vision that Kannapolis is going to be about science and health,” she said. “Ten years from now, we’re going to be able to say we made a huge difference in the world with what we’ve learned about nutrition and health. We’ll be able to share with our community and state good health, diet and lifestyle choices.”
Back to School, at a National Institute of Health
What did some N.C. science teachers do on their summer vacations? They spent time in a lab in RTP.
By Gabe Rivin
Sula Teachey had not been in a professional science lab since the mid-1980s, when she was an undergraduate student. But she, along with other high school science teachers, recently had the opportunity to work with some of the nation’s top scientists, in a program that aims to bring current environmental-health research into classrooms across the state.
Teachey was one of 11 teachers in the Science, Teachers, and Research Summer Institute, or STaRS, a program hosted by the National Institute of Environmental Health Sciences. For two weeks in July, the teachers traveled to the NIEHS’s campus at Research Triangle Park, where they learned from, and shared lab benches with, federal health researchers.
Teachey and the others performed gel electrophoresis, a technique used to separate and analyze DNA. They studied the connections between genes, cancer and the environment. And, among a number of other topics, they learned how federal researchers follow strict requirements for animal testing.
“It was great getting to work with real scientists, and to do the lab work,” said Teachey, who teaches science at Goldsboro’s Wayne School of Engineering. She said that the experience will allow her to show students what a career in health sciences would look like.
And that’s the point, according to Huei-Chen Lao, an education and outreach coordinator at the NIEHS, who helped develop the program. Lao said that students often don’t get to see the exciting sides of science, those that touch directly on their lives.
“We like the students to realize science is a very relevant part of our day-to-day lives,” she said.
The NIEHS’s goal is to introduce teachers to some of the biggest trends in health research, with the hope that the lab work and scientific theories will find their way into the classroom. In doing so, the NIEHS is helping to cultivate the next generation of health researchers. It’s a generation that, according to Lao, will have access to a large pool of jobs.
North Carolina is home to several major science-related industries, including pharmaceuticals, biotechnology and university research. High-tech industries, in fact, account for about 10 percent of the state’s jobs, according to a 2013 report by the N.C. Department of Commerce. Biotech companies alone employ 55,000 people in the state, according to the industry’s trade association.
Those employment figures are something that students should be aware of, according to Linda Sutton, a science teacher at Polk County Early College High School and another participant in this year’s STaRS program.
“More and more, you think the students need to be trained in some sort of biotech field, because that’s where they’re going to find jobs,” she said. “There is such a wide range of career opportunities that they need to be made aware of.”
Connecting to students’ lives
Beyond employment, the STaRS program could impact students’ decisions about their health.
Sutton said that she studied the interactions between our genes and our environment.
“I got some neat information about that that I could pass onto students, about how some people are more prone to certain diseases,” she said. “So if you have a history of lung cancer in your family, that you might have that gene, you have to be even more cautious about smoking yourself.”
Teachey said that it’s important to connect scientific lessons to students’ lives. Her students, she said, have shown a large interest in the problems with drinking water, a concern that could tie into a class lesson.
“They have in their lives constantly heard about exposure to heavy metals or exposures to things that might be carcinogenic,” she said. She added that she hopes to “get them in some kind of project that would help them look for water quality and how they could make connections with that and the quality of their health.”
Building those connections between the lab and our lives was a major focus of the program. So too was the development of lesson plans, which will bring that information into the classroom.
Though teachers spent their first week learning from researchers and working in labs, in their second week they spent time collaborating on classroom material.
Sutton said that she often benefits from these sorts of experiences.
“That’s really valuable – for the teachers to get together and share that information,” she said.
The NIEHS was careful to make sure that its lessons could find a place in high school classrooms. Lao said that the program aligned with state science standards, and therefore related to the material that teachers need to cover in their classrooms.
Making it work
STaRS launched in 2012 with just one teacher. It didn’t run in 2013. So how did a federal agency develop a program with 10 times as many participants as when it started?
Ericka Reid, who directs the Office of Science Education and Diversity at the NIEHS, said that the institute had a crucial collaboration with North Carolina New Schools, which offers professional development and other services in schools across the state. The organization helped the NIEHS recruit teachers, which would have been difficult for the institute, Reid said.
“We as a federal agency cannot necessarily knock on the doors of schools and say, ‘We want to do this program with you,’” she said
The partnership also helped fund the program. North Carolina New Schools offered teachers a stipend for their time, which the NIEHS matched with its own funding.
In addition to the funding, teachers received a significant incentive to participate: free housing for two weeks.
“I live five hours away,” Sutton said. “Providing a place to stay – that allowed me to do it.”
But beyond funding and accessing teachers, the NIEHS could not have pulled off the program without its researchers, more than 20 of whom volunteered their time, Lao said.
Keeping the connection
With glowing feedback from 2014’s participants, the NIEHS plans to continue offering the program in the future.
In the meantime though, Lao and other NIEHS researchers are keeping their connections with this year’s crop of STaRS teachers. They will be visiting some of the teachers’ classrooms, including a visit on Oct. 10 to Rocky Mount’s Early College High School, where they’ll co-teach for the day.
Sutton and Teachey said they’re grateful that the NIEHS has continued to offer resources even after the program ended. And Teachey said the program helped her realize that she could tap federal resources for her high school classes.
“It led me to see how available resources are,” she said. “In the past, I hadn’t seen that as an option.”
A Face Full of Pie Against Huntington’s Disease
Instead of allowing Huntington’s disease to defeat her, Sarah Foster has decided to leave a legacy of activism.
By Taylor Sisk
Sarah Foster was feeling a change come over her, and preferred not to consider its source.
Nonetheless, she accepted that it was best to know, to “put a name to whatever was invading my mind.” So she decided to get her blood drawn.
The answer was what she suspected, and dreaded. She was positive for Huntington’s disease, an inherited neurological disorder that causes nerve cells in the brain to waste away, affecting control of movement, cognitive abilities, mood and behavior. She knew that HD is a disease that’s progressive and fatal.
That was in December 2010.
Though it took some months to pull herself out of the depression that followed her diagnosis, and a few more until she was “back,” she discovered that she wasn’t ready to give up.
Foster is a proponent of the seventh stage of pioneer psychoanalyst Erik Erikson’s theory of psychosocial development: “generativity versus stagnation.” That’s the stage in which adults between the ages of, roughly, 40 and 65 challenge themselves to create something of benefit that will outlast them, a legacy.
Foster, who falls within this demographic, considers herself to be undertaking that challenge.
Since her diagnosis, she’s become an activist in the effort to find a cure for HD, a disease that’s affected the lives of more than 30,000 Americans who have been diagnosed. More than 250,000 others are at risk of having inherited it.
She organized an annual paddler’s event that will be held in April on the Neuse River, near her New Bern home, open to “anything that floats that doesn’t have a motor on it,” she says.
More recently, she’s taken her efforts online.
“First there was a blog,” Foster said on a recent late morning over ice coffee, “and a lot of people started going to the blog, and I was getting some good feedback. So I thought, ‘What else can I do?’”
So, with an appreciative nod to the ALS Ice Bucket Challenge, she launched the HD Pie In the Face Challenge.
“I thought, ‘Pie In the Face,’ because one of the things I’ve always wanted to do was get a pie in the face. So I figured, “I’ll get to experience that,” and raise some funds as well.
Since Foster took the first pie in the face on Aug. 15, in her front yard, videotaped by her husband, Randy Foster, editor of the New Bern Sun Journal, the challenge has taken off. One of the two organizations that Foster requests donations be made to, the Huntington’s Disease Society of America, reported a quadrupling of online donations in the two weeks following the launch.
Pies have been propelled faceward in several European countries now, with particular enthusiasm in the UK. A Pie in the Face campaign is underway in Canada. A serviceman in Afghanistan didn’t have at his ready disposal the ingredients to make a pie, so he improvised, using yogurt. He then did a push-up into his concoction.
In videos submitted, people have been prematurely pied, in the middle of their spiels; others have received an unexpected second or third pie. There’s been some synchronized serial pieing. A lot of folks have very cleverly done the HD Pie in the Face and then the ALS Ice Bucket to wash it off. “I’ve only seen one person do it the other way around,” Foster said.
The challenge has also gotten a mention on cbsnews.com.
Of the whole experience, Foster said, “It’s pretty amazing.”
The Pie in the Face Challenge has given Foster focus. HD can be all consuming. Its effects are cognitive – leading to poor impulse control and trouble with memory and organizational skills – physical – in advanced stages, jerky, uncontrolled movements and trouble with balance – and emotional, triggering depression, irritability and apathy. In time, it robs those afflicted of the ability to walk, talk and swallow.
HD can strike at any age, but onset comes most typically in the mid-30s to mid-40s. Death most commonly comes 15 to 25 years post-onset. There is yet no cure.
But there is, for Foster, generativity versus stagnation. Her latest challenge is jazzing her.
“To me, [the Pie in the Face Challenge] has been, like, the coolest and most important thing I’ve done other than have a family,” she said. “I feel like any kind of awareness of HD is a victory.”
That she herself remains fully aware of her condition is, today, a celebration: Awareness slips from those who live with HD as the disease takes deeper hold. Eventually, that’s arguably both a curse and grace.
“Part of me hopes that by the time my hard symptoms hit, I will lose my awareness,” Foster has written on her blog. “The notion of living through HD and being fully aware of it seems horrific, like enduring a surgery that lasts for 25 years without anesthesia. Perhaps the lack of awareness is a blessing.”
For now though, there’s this work. Foster is mindful of the importance of keeping things in perspective. For a while, she focused on bringing actor James Franco aboard the cause after he tweeted about the Pie in the Face challenge. But that prospect now looks dim. Time to move on.
Her focus is now primarily on progressing in increments: She’s channeling her Pie in the Face efforts on a grassroots, statewide campaign, hoping to spread the challenge a hospital at a time, meeting with the PR folks at one and encouraging them to challenge another nearby.
She’s encouraging advocates to get their schools and churches involved. She wants to see Pie in the Face booths at fall county fairs. And she’s aiming to get local celebrities and politicians on board. (New Bern Mayor Dana Outlaw took one to the mug, calling it a “smear campaign” he could get behind.)
“[I]f I was somehow able to face the thing with my eyes wide open, it might make the road easier for my caregivers,” Foster continued on her Huntington’s Disease and Me blog, “I might be more compliant, more reasonable. I would certainly be more like me. If there is such a thing as an awareness muscle, I am exercising it now in the hopes that I can stick around and notice the ride.”
For today, it’s compliance in pursuit of outcome, a vigorous exercise regimen: generativity versus stagnation.
“Generativity,” says Wikipedia, “in essence describes a self-contained system from which its user draws an independent ability to create, generate, or produce new content unique to that system.”
That’ll work for Sarah Foster, today and for the foreseeable future.
“I am developing simple signs to use with my loved ones,” she concluded in that recent blog, describing her preparations for what may lie ahead. “One means ‘I love you.’ The other means ‘I’m still in here.’
“I hope I will be.” Regenerative energy onward.