KIGALI, Rwanda (AP) — One afternoon in September, a young woman with a tablet computer sat next to Alphonsine Umurerwa on the living room couch, asking questions, listening carefully.
She learned that the woman's 23-year-old daughter, Sandrine Umwungeri, had been very sick for about a year, gradually becoming so weak that she stopped leaving their tin-roofed home in a hilly section of Rwanda's capital city. The family thought she had malaria.
Medicines from a local pharmacy didn't help. In March, she died. The interviewer asked: When did Sandrine begin to feel weak? Did she have a fever? Did her skin take on a yellow hue? Each typed answer determined the next question to pose, like following a phone tree.
This was a "verbal autopsy" — an interview in which a trained health worker asks a close relative or caretaker about a recently deceased person. Increasingly, health officials are using these tools and their computer algorithms to learn more about the global course of human disease.
About 50 countries have attempted verbal autopsy projects, and the list is growing. In October, Bloomberg Philanthropies — a major funder of international health data initiatives — announced that it will devote another $120 million over the next four years to continue projects in 20 previously funded countries and add five more.
That includes money for verbal autopsies, as well as cancer registries and other programs intended to help developing countries gather accurate data about the health of their citizens.
"With more and better data on causes of death, more countries can save more lives," Michael Bloomberg, the philanthropy's founder, said in a statement.
The work is badly needed, experts say.
An estimated 60 million people in the world will die this year, and half will have no death certificates or other records describing what killed them. Most will be in low and middle-income countries, particularly in Africa and parts of Asia.
That means the common understanding of overall disease and mortality trends in the developing world often relies upon broad estimates and guesswork. So do the decisions many countries make about which health problems to prioritize.
"The scale of the problem is really quite staggering," said Lucia D'Ambruoso, a University of Aberdeen researcher who has studied verbal autopsies. "There's a moral imperative, as well as analytical one, to be able to shine a light on those otherwise invisible deaths."
To be sure, knowing what's killing people can be tricky even in developed countries.
For example, though the United States requires doctors to sign death certificates, recent studies suggest that some doctors put down certain conditions as a default, which is one reason why some experts believe heart disease has been over-reported as a cause of death in the U.S.
But it's far more problematic to collect accurate data in countries where only a fraction of deaths occur in hospitals, or with doctors present.
In Rwanda, only an estimated 20% of deaths occur in hospitals, and there is just one licensed doctor for every 8,000 people, according to data from the Rwanda Medical and Dental Council.
The current verbal autopsy campaign was pioneered more than 50 years ago, in small physician-led research projects in Africa and Asia.
One milestone study was conducted in India. In the late 1990s, trained interviewers — not doctors — went into the homes of people who had recently died. They asked close relatives about the symptoms and events that preceded a loved one's death. Small teams of physicians later used the interviews to determine the cause of death.
The Million Death Study, as it was called, suggested that India had far more malaria and smoking-related deaths than the World Health Organization had estimated, but far fewer HIV deaths than WHO expected.
Clearly, verbal autopsies have drawbacks. They rely on grief-stricken people to clearly recall clinical details. And the validity of results may vary depending on who's answering the questions, what questions are asked, and how responses are interpreted.
Some health advocates — including the philanthropists Bill and Melinda Gates — have pushed for other methods, such as minimally invasive tissue sampling, a technique in which fine needles are inserted into dead person's body, gathering samples from different organs for rapid analysis.
But such sampling has limits, too. It requires specially trained technicians, and samples have to be shipped for analysis within 24 hours after a person's death.
Verbal autopsies "are much better to do that than do nothing, which is the only alternative" in some countries, said Peter Byass, a researcher at Sweden's Umea University.
The New York-based organization Vital Strategies began working with the Rwandan government in 2015 to develop a verbal autopsy program. About 2,700 verbal autopsies have been done.
At first, families sometimes perceived the questions as intrusive. But over time, most people have come to accept them.
The verbal autopsy of Sandrine Umwungeri was conducted by Leonie Mfitumukiza. After allowing several months for the family to rest and grieve, she had come to ask about Umwungeri's illness. Respectfully, and pausing often to offer comfort and consolation, Mfitumukiza followed the standardized set of questions about her symptoms.
MINNEAPOLIS — Barton Scott found the girl on Snapchat. He pretended to be her friend and persuaded her to give up her password. Then Scott took what he really wanted: the photos marked "My Eyes Only."
Scott, in his mid-30s at the time, used the girl's risqué images as leverage, threatening to publish them online if she didn't do what he wanted.
He wanted more graphic photos. He wanted videos. She sent them, fearing her life would be over if he made good on the threat. She was 15 years old.
About five years ago, the U.S. Attorney's Office in Minnesota first started seeing "sextortion" schemes like this one, in which predators target young people online. Prosecutors say they've since seen an alarming rise in frequency of these devastating and hard-to-solve cases.
"It doesn't matter where a kid is from — their economic status, social status — it seems to touch every group of kids that's online," said Miranda Dugi, an assistant U.S. attorney in Minnesota.
The term describes a range of online crimes involving coercion, usually on social media sites or apps. A predator often poses as a teenager and manipulates a victim into sending sexually explicit photos. Some, like Scott, pretend to be a friend or acquaintance. Others use a fake photo and online profile and strike up an online romance.
Then they prey on the child's worst fear — to be exposed to their classmates, coaches, teachers or faith leaders — unless their victims give money, photos or sexual favors.
With the boundless reach of the web, perpetrators can engage in hundreds of scams with different victims. One case in Minnesota involved a National Guardsman preying on children from Afghanistan.
Scott, who lived in New Richmond, Wisconsin, and worked in Minnesota, was sentenced to 25 years in prison last month. Prosecutors in that case say they believe he ensnared hundreds of victims, from Maryland to Colorado. Many of them may not even know Scott has been imprisoned, as victims were never identified.
And that's the horror of this crime, says Dugi: "A single person sitting in a single location using a handful of accounts can just wreak havoc all over the country."
Because sextortion is a relatively new development in sexual cybercrime, it's hard to say exactly how often it happens and who is targeted.
One recent report, conducted by the FBI's Internet Crime Complaint Center — known as the I3 — found a 242% increase in digital extortion crimes from 2017 to 2018. That jump includes a variety of online schemes, but the report noted that the majority were "part of a sextortion campaign in which victims received an email threatening to send a pornographic video of them or other compromising information to family, friends, co-workers, or social network contacts if a ransom was not paid."
"It's a new frontier," said David Finkelhor, director of the Crimes Against Children Research Center at the University of New Hampshire. Finkelhor said most cases fall into one of two categories: a romantic relationship ends and one of the parties coerces the other with private images, or a stranger targets and manipulates the other person online. Both are difficult to police, especially for young people who see it as normal to take and share nude photos.
"You will hear people say things like, 'We should tell kids, don't ever make sexy pictures of yourself and send them to someone,' " Finkelhor said. "But we don't really know how to handle this problem."
Sextortion isn't specific to minors. Jeff Bezos, Amazon's 55-year-old chief executive, claimed in February that the National Enquirer targeted him with a sextortion scheme, threatening to publish a cache of embarrassing photos, including a "below-the-belt selfie."
Ohio-based attorney Nadeen Hayden said she's seen a spike in adult male clients being extorted by women they've met on adult websites. "It's a modern nuance of when a relationship goes bad, added to these relationships where people barely even know each other," she said.
But 71% of sextortion victims are under 18, according to the Brookings Institution, a nonprofit that conducted the one of the first studies quantifying sextortion in 2016.
The crime also isn't gender specific. Last year, a judge sentenced Marcus Hinkle, a former YMCA worker from Burnsville, Minnesota, to 20 years in prison for targeting 13-year-old boys on Xbox and Instagram. This method of online trickery is most common among minors, according to the Brookings report, which concluded 91% of juveniles were manipulated through social media scams.
The report also found that perpetrators get a much lighter sentence if the case is prosecuted locally instead of federally. It concluded that Congress had failed to adequately address this new evolution of cybercrime against children, and that the emerging threat of sextortion was so prominent that they should create a new law to better punish perpetrators.
Perhaps the most devastating case of sextortion to ever hit the Midwest began in Eagan, Minnesota.
On Oct. 2, 2015, federal agents and Minneapolis police officers raided the single-family home, located near an elementary school, where Anton Martynenko lived. They found flash drives and tablets in the ceiling and walls containing thousands of photos of boys and young men, sorted meticulously by the victim's name, age and hometown.
Using fake photos of young girls, Martynenko targeted boys in several states on Twitter, Facebook and Instagram. Telling them that he was a student at the University of Minnesota or new to the state and trying to make friends, Martynenko tricked the boys into sending him naked photos. He told some that he was a modeling agent, even mocked up fake contracts. When the boys stopped responding, Martynenko splashed their photos on social media.
In 2016, Martynenko was sentenced to 38 years in prison in what federal prosecutors called the biggest child pornography case ever in Minnesota. Investigators believe his sextortion scheme reached 150 to 300 victims, according to court records.
At least two of those have since killed themselves.
"It doesn't matter where a kid is from — their economic status, social status — it seems to touch every group of kids that's online."
Miranda Dugi, an assistant U.S. attorney in Minnesota
The first thing Gene Freund did after undergoing an incisionless brain procedure intended to still the tremors in his right hand was reach for a flimsy Styrofoam cup on a hospital side table.
After jokingly advising bystanders to ready a mop, he grabbed the cup, took a long drink and set the cup back down without spilling a drop.
He also wrote his name legibly for the first time in years and, after being discharged, ate a bowl of soup at a hotel restaurant without spilling.
“It’s like most disabilities,” said Freund, 73, of Fernandina Beach, Florida. “You learn to cope and adapt, and when you have the opportunity to remove that disability or at least a big portion of it, it’s absolutely amazing.”
In Freund’s case, the disability is essential tremor, the most common movement disorder and one that affects an estimated 10 million Americans alone. Actress Katharine Hepburn reportedly was one of them. By comparison, roughly 1 million Americans have Parkinson’s disease.
Medications, such as beta blockers and epilepsy drugs, reduce tremors by about 60% in half of patients, by one calculation. But even those patients can develop resistance over time. In Freund’s case, medications never stilled his shaking hands entirely.
But a Nebraska hospital was able to help him. St. Mary’s Hospital, a CHI Health facility in Nebraska City, is one of 16 places in the country offering a relatively new procedure called MR-guided focused ultrasound. Patients like Freund have been coming from all over the country to be treated there.
As the name implies, the procedure is performed with the patient in an MRI, or magnetic resonance imaging machine. The focused ultrasound device, which resembles a salon hairdryer helmet, encircles the patient’s head, said Dr. Travis Tierney, the neurosurgeon performing the procedure at St. Mary’s.
Inside the dome are 1,000 speakers, which deliver ultrasonic or high-frequency sound waves. During treatment, the sound waves overlap in an area in the brain measuring about 3 square millimeters, heating it to about 130 degrees Fahrenheit. The heat kills the cells responsible for the tremor, which lie in what’s known as the ventral intermediate nucleus of the thalamus.
Before turning up the heat, however, doctors first map the brain with MRI and then with low-energy sound. Patients are awake and talking the whole time, Tierney said, allowing practitioners to check for side effects such as tingling in the hands or face that indicate that they’re off target.
“The patient’s really working with me the whole time,” he said. The MRI also allows doctors to make sure they’re generating the right amount of heat.
There are no incisions or holes in either the scalp or the skull. The procedure usually takes two to three hours. It’s currently approved only on one side of the body, which targets the tremor on the opposite side.
Tierney said the tremors typically improve right away. Like Freund, many patients can write their names legibly for the first time in years afterward or drink a bottle of water without spilling. In such cases, physicians often are treating not just the tremors but also the social ills that come with them, he said. Some patients may avoid going out, particularly to restaurants.
“This is one where immediately afterward everyone is crying,” Tierney said. “It’s one of the happy things (that) you can do as a neurosurgeon.”
St. Mary’s began offering the treatment in May. According to CHI, it’s now done more than any other center — 54 by the end of October. Next in line, Tierney said, is a group at Brigham and Women’s Hospital, a teaching hospital of Harvard Medical School, which had done 48 procedures. The most active sites have long waiting lists, which might explain why St. Mary’s has drawn so many out-of-state patients. Only four have been local residents.
Tierney previously worked at a children’s hospital in Florida, which wasn’t interested in expanding a program for adults. So he approached leaders at Creighton and CHI Health about offering it here. An Omaha native and Creighton University graduate, he got his medical degree at Johns Hopkins and trained in neurosurgery at Massachusetts General Hospital.
St. Mary’s just happened to have the model of MRI machine the system is designed to work with. It’s also the model Tierney used in Boston while participating in a clinical trial of the procedure.
That multi-center trial, results of which were published in the New England Journal of Medicine, led to Food and Drug Administration approval of focused ultrasound for essential tremor in 2016. The procedure now is covered by Medicare in 38 states, including Nebraska, according to Insightec, the Israel-based company that developed the technology. The FDA more recently approved the technique for use in a type of Parkinson’s disease in which tremor is the main symptom.
St. Mary’s also offers another advantage: Its MRI machine isn’t as busy as those at larger hospitals.
“We have a steady stream of patients and the time to do it,” Tierney said.
Currently, the more common surgical treatment for patients whose tremors don’t respond to medication is deep brain stimulation. It involves implanting an electrical probe into the same region of the brain targeted by focused ultrasound. A wire under the skin connects the electrode to a pacemaker-like device that’s implanted in the chest. Deep brain stimulation is the preferred surgical procedure for Parkinson’s and is likely to remain so, Tierney said.
But that procedure comes with a 1% risk of stroke and a 4% risk of infection, said Tierney, who estimated that he’s performed about 1,000 of them. Not only is focused ultrasound less invasive, the stroke risk is lower, with no strokes reported so far among the several thousand cases performed.
“It’s the safety aspects that I really like as a treatment for essential tremor,” he said.
About 5% of patients have side effects such as numbness in the face or hand, he said. There also can be other temporary effects, including difficulty sleeping and walking, during the up to six weeks it takes the lesion created in the brain to heal. Those usually peak three days after the procedure.
Tierney, who is working on a consultant basis for CHI Health, said he isn’t aware of any serious detractors. But the treatment is newer than deep brain stimulation and many neurologists haven’t yet trained in it.
“No one’s saying it’s a bad idea, but some say (deep brain stimulation) is the way to go,” Tierney said.
Insightec’s website indicates that the tremor control remains at up to 90% after several years in the patients the company was able to follow.
Patrick McCartney, executive director of the International Essential Tremor Foundation, based in Overland Park, Kansas, said focused ultrasound has “created a lot of buzz” in the essential tremor community, given that it’s the first new therapy to come along since deep brain stimulation nearly 20 years ago.
That treatment has many years of data behind it, he said, although early indications for focused ultrasound are positive. Unlike focused ultrasound, however, deep brain stimulation is reversible and can be used on both sides of the body, he said. Researchers apparently are exploring using focused ultrasound on both sides as well.
But part of the struggle with essential tremor is that treatment results vary from patient to patient. “We’d caution that no one thing works for everyone,” McCartney said.
Tierney said he next wants to work with Creighton researchers to study the treatment’s use in epilepsy and tumors.
Freund, a semi-retired college professor, said he had some numbness in his lip and tongue after the procedure, but that’s virtually gone. The tremor in his right hand, his dominant one, is more than 90% gone as well.
Before coming to Nebraska, he had kept tabs on treatments for some time. He wasn’t comfortable with deep brain stimulation. In May, he checked with a contact at the University of Virginia Health System, but that hospital had a two-year wait for focused ultrasound. His contact suggested St. Mary’s. He traveled to Nebraska in June.
Now he can eat without spilling, handle barbecue ribs and wings and take a shower without dropping the soap a half a dozen times.
He’s ready to try the metal detector his wife bought him. Before, the tremors were so bad he couldn’t really control the wand. He’s also thought about giving cowboy action shooting, a former pastime, another try. He stopped competing and sold his gear about seven years ago when he no longer felt safe handling the pistols.
“I had high expectations,” Freund said, “but I was really surprised and amazed how well it did work out. It was awesome.”
As the world grows more complex, college students increasingly complain of anxiety, depression, loneliness and feelings of hopelessness.
In response, the University of Nebraska-Lincoln wants to improve access to help by placing counselors in residence halls. The University of Iowa has done this, as have some other universities across the country.
The strategy reflects concern on the part of college administrators and counselors about the emotional and mental challenges that many students face. The national trend has compelled universities to embed counselors into specific colleges, academic departments, athletic departments and residence halls.
This fall, Megan Lawrence, a UNL marriage and family therapy graduate student, became the university’s first counselor placed in a residence hall. She spends 20 hours a week in an office in a link between Abel and Sandoz Halls. UNL expects to put counselors in other dormitories in the future, too.
Sometimes Lawrence is busy and sometimes she isn’t, she said, but she’s glad to be there.
“It’s a new resource for students,” said the 27-year-old from Minnesota, who will have her master’s degree next year.
“I think the advantage to being in the residence halls is the accessibility it gives to the students,” she said.
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Statistics suggest that the need is there. Eighteen percent of almost 1,000 UNL students surveyed in 2018-19 said they were not sure where to go on campus if they needed help for emotional or mental problems. So placing a counselor closer to students might make a difference. A national survey of college students called the National College Health Assessment finds that the need for help is trending up. From fall 2015 to spring 2019, at least seven measures of college students’ emotional and mental health worsened.
Last spring, for instance, 57.5% said they had felt hopeless at some point in the last 12 months, up from 49.6% in fall 2015. More than 46% in last spring’s survey said they felt so depressed at some point in the past 12 months that it was hard to function, up from 36.1% in fall 2015.
Anxiety, loneliness, serious thoughts of suicide and other negative feelings increased, too.
“It’s a complicated thing,” said Dr. Steven Wengel, a psychiatrist and assistant vice chancellor for wellness at the NU Medical Center and the University of Nebraska at Omaha. “It seems that there’s a multitude of factors here.”
Nance Roy, chief clinical officer at the Jed Foundation, cited world instability, national divisiveness, hate crimes, school shootings, terrorist attacks, uncertainty over students’ financial future and student loan debt as reasons for the increase in symptoms of mental problems.
Those are enough “to make all of us more anxious and depressed,” she said. The Jed Foundation is a New York-based nonprofit focused on the mental health of teens and young adults.
And Roy didn’t even mention social media. That can tempt students to compare themselves with others and to imagine that their lives aren’t cool or fulfilling enough, said Barry Schreier, director of the University of Iowa Counseling Service.
“We tend to put our best faces forward” on social media, he said.
He also speculated that the stigma of mental illness has declined, counseling services on campuses have grown, and students more readily seek help than they did in the past.
Indiga Hadford, a UNO senior, said social media keeps her connected to school and friends all the time.
“There’s pressure from everything,” Hadford, of Omaha, said. “You’re doing your best 24/7, never slipping up.”
Hadford, a competitive swimmer for the Mavericks, said she found support from her teammates and coaches. Emotional health, she said, is “a real concern for college students.”
Jennifer Peter, a psychologist and director of student counseling services at Creighton University, said social media leads to comparisons, including how many “friends” one has, how many “likes” he gets and how many “views” his tweets receive.
But it’s still not clear why emotional problems seem to be increasing in American colleges, she said.
“I don’t know that we’ve got a good handle on it yet,” Peter said.
Some wonder if students haven’t learned skills of resilience because Mom and Dad were always there to catch them when they fell.
Roy said that’s a simplistic view. True, some students have been protected, she said, but others haven’t had that support and “have learned skills for survival ... They may struggle with different issues, but being overprotected isn’t one of them.”
Jake Johnson, assistant vice chancellor for student affairs at UNL, said he intends to add two more counselors in residence halls next fall.
One of the questions today in higher education, Johnson said, is “can we meet the growing demand for mental health services?”
Wengel said UNMC encourages stress management through adequate sleep and exercise. Some med center colleges use meditation, yoga, exposure to literature and other humanities, and participation in musical groups.
Roy said Cornell, the University of Pittsburgh, the University of North Texas and Marshall University have also embedded counselors in residence halls.
Peter said Creighton has considered doing it and still might.
But one negative to that, she said, is that counseling is high in stress and burnout, and it’s helpful to have the counselors in one building. They, too, need support — from one another.