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Using Medicine and Science to Improve the Quality of Life

Category: Science,Science & Tech

Medical and scientific breakthroughs, some with ethical concerns, are being used to help people.

Treating the Entire Patient

Rebecca Onie

Co-founder and chief executive emerita of Health Leads

Rebecca Onie likes to tell the story of a teenage boy who was mysteriously losing weight. His doctor, stumped, huddled with several other caregivers to decide which medical tests to run. Then someone asked the boy a simple question: Are you hungry? It turned out that the teen had been homeless for weeks and had eaten almost nothing. He had been too embarrassed to speak up, but was relieved someone had finally asked.

To Ms. Onie, that story offers an example of what is wrong with America’s health care system: It can be so focused on medicine that it misses the social issues that really drive health.

For more than 20 years since she co-founded the nonprofit Health Leads, she has helped push this more holistic view. Through her work and the work of others, today it’s well accepted that a patient — particularly one with a chronic illness — cannot be healthy without access to healthy food, a safe place to live and transportation to medical services.

Now, Ms. Onie, 40, is tackling an even bigger problem. She’s begun an initiative to help bring together insurers, foundations, medical societies, state governments, community organizations and others who embrace this broader view of health. She said these groups needed to see that they were all working toward the same goal, regardless of what was happening at the federal level.

“It’s that disconnect that I think creates the opportunity for real change,” Ms. Onie said.

Gail Boudreaux, chief executive of Anthem, one of the nation’s largest health insurers, said she had long been impressed with Ms. Onie’s big-picture perspective, her ability to bring people together and her understanding that success came only with scale.

“She’s probably one of the most passionate people about this issue that I’ve ever met,” Ms. Boudreaux said.

“She’s really fun to talk to because you always learn and she makes you think.”

Using Empathy and Medicine

Antoni Ribas

Professor of medicine, surgery and molecular and medical pharmacology at the University of California Los Angeles and a director of the Parker Institute for Cancer Immunotherapy at U.C.L.A.

In January 2012, R. Stewart Scannell’s doctor flatly informed him that melanoma had spread throughout his body and into his brain and he had just months to live. “There was no sympathy, no empathy, no nothing,” Mr. Scannell said.

Mr. Scannell, who was 64 at the time, didn’t want to give up. He tracked down a clinical trial at U.C.L.A., and turned up in the office of Dr. Antoni Ribas.

The tone was so different, said Mr. Scannell, who has flown from his home outside Oklahoma City to Los Angeles for treatment every three weeks since, a total of 105 times. He now considers Dr. Ribas a friend.

Dr. Ribas is a patient favorite not only because of his bedside manner. He has also saved their lives.

For the last 17 years, Dr. Ribas, 52, has been at the forefront of a revolution in treating cancer, by turning the patient’s own immune system against it.

In 2001, when cancer immunotherapy was mostly dismissed as hopeless, Dr. Ribas began one of the first clinical trials to test it. His first patient to respond is still alive. He later led the clinical development of an immunotherapy drug called Keytruda, which has since been approved to treat metastatic melanoma, lung cancer and other tumors.

Mr. Scannell’s tumors have either stopped growing or shrunk for the last six years. He has had no obvious side effects, and he is back on the golf course a day or two after each treatment, he said.

Most patients don’t get such fabulous results, however, and half of those with metastatic melanoma still die within five years. So Dr. Ribas, a fourth-generation physician who spends two days a week seeing patients and the rest in his lab, has been studying other ways to manipulate the immune system to fight cancer.

“It’s always nice to see responders, but I see the ones who don’t respond, too,” Dr. Ribas said. “It’s not the time to slow down. It’s time to do more.”

To Bring Back the White Rhino

Katsuhiko Hayashi

Professor, department of Stem Cell Biology and Medicine, faculty of medical sciences at Kyushu University, Fukuoka, Japan

Katsuhiko Hayashi smiles when he thinks about helping to restore the white rhinoceros. The last male of the species died in March, and the only two females are growing old. But if Dr. Hayashi, a reproductive biologist, can clear some major hurdles in his lab, he can help bring back the species.

Less than two years ago, his team became the first in the world to grow viable mouse eggs in a lab — and rear baby mice — from skin cells taken from an adult animal’s tail. He has since moved on to similar but more complex work in monkeys and rhinos.

The same research could also be a tremendous help to humans, but it’s more ethically fraught and discussing it makes him a little anxious. He and his peers are taking slow, methodical steps toward transforming human skin or blood cells into healthy eggs and sperm. If they succeed — likely not for decades — they could cure most infertility and stop women’s biological clocks from ticking.

But making eggs or sperm in a lab could also be the stuff of scary science fiction films, with a few stolen cells potentially leading to offspring.

So Dr. Hayashi, 46, who once thought he would grow up to run his uncle’s cattle farm, thinks the work should not be tried in people until scientists could be certain that such babies would be just as healthy as those born of more typical eggs and sperm.

Of course he would love to help infertile couples have the child they have always wanted. But while a handful of other scientists are already moving into studying human cells, Dr. Hayashi is happy to stick with animals, even if his peers beat him in the scientific race.

“Some people are competitive,” he said. “I like peace.”

Building Blocks of the Brain

Sergiu Pasca

Assistant professor of psychiatry and behavioral sciences at Stanford University

Between his thumb and forefinger, Dr. Sergiu Pasca held up a small vial of liquid. Inside floated a milky ball of cells — the early stages of an effort to better understand the human brain by building its parts from scratch.

A decade ago, just out of medical school in Romania, Dr. Pasca pioneered work transforming skin cells into multipurpose stem cells and then into the type of brain cells found in the cerebral cortex — the thinking area and most distinctly human part of our brains. He has made brain cells from people with autism and schizophrenia, for instance, and is working to understand the ways in which they operate differently.

Scientists used to grow cells in a flat layer on a petri dish, but Dr. Pasca discovered that when he and his colleagues allow stem cells to grow in a ball shape and guide them to become brain cells, they begin to self-organize, develop and function more naturally. Other researchers are using similar approaches to build three-dimensional cultures, also known as organoids, such as the eye, gut or liver.

When Dr. Pasca, 36, put two balls resembling different brain regions next to each other, they started to communicate and form neural circuits. After he had fed them nutrients for about nine months, they had matured to look more like the cells of a newborn brain than those of a fetus.

Before anyone accuses him of playing Frankenstein, Dr. Pasca is quick to note that these brain balls are still worlds away from a true, working brain. There are no blood vessels, so the balls don’t have the energy supply to grow, and many types of cells are still missing.

But he and several colleagues recently published a commentary in the scientific journal Nature calling for a public conversation to discuss ethical research guidelines in this area. “An ethical framework must be forged now, while brain surrogates remain in the early stages of development,” they said.

Looking to Pigs for Transplants

Luhan Yang

Co-founder and chief scientific officer of eGenesis, a start-up based in Cambridge, Mass.

Luhan Yang is haunted by one statistic: 20 people die every day in the United States awaiting an organ transplant. “It’s a really heartbreaking situation for the patient, their family and the doctor who wants to do more,” she said.

The figure is probably far larger in her native China — or would be if organ transplantation were more widely available. This knowledge drives her work every day.

Dr. Yang is trying to make pig organs safe to transplant into people. The shortage would disappear if people could get spare kidneys, lungs and hearts from pigs.

Researchers largely gave up on this idea in the 1990s because they worried that pig viruses would spread to humans, and because they couldn’t figure out how to prevent the human body from rejecting organs from another species, Dr. Yang said. (Pig heart valves can be used because dead tissue doesn’t pose the same health risk.)

But Dr. Yang and a few other scientists are now renewing interest in the field. She and her colleagues showed last year that they could edit the pig genome in dozens of places simultaneously to remove viruses that might otherwise infect transplant patients. Previously, scientists had successfully edited only a few genes at a time.

Now, Dr. Yang’s team is working to adapt the pig immune system so the organs won’t be rejected when transplanted. All of this is tricky and time-consuming. And of course, the pig has to be able to survive and thrive, despite these genetic changes.

Her mentor, the Harvard geneticist George Church, said Dr. Yang had the energy, intelligence and determination to make the science work. In addition, she is good at getting other smart, talented scientists to share her vision. When she left his lab a few years ago, she took nine other researchers along, Dr. Church said without resentment.

Dr. Yang, 32, is mindful that there may be ethical concerns about her work. But, she said, she feels the importance of saving human lives is worth the ethical risk.

How We Picked Our Visionaries

People love lists.

We want to check out the best places to travel, catch up with the best inventions of the last 100 years, be in the know about the best-dressed people, the best books, the best schools. And on and on.

Of course, there is a risk to listmaking. Maybe your choices won’t hold up over the years. Maybe the best book of decades ago seems not so great today.

With the listmaking fervor and its risks in mind, we searched for people who would fit our criteria for visionaries. They had to be people who are forward-looking, working on exciting projects, helping others or taking a new direction. We wanted diversity in gender, race and ethnic background.

We assigned writers who are knowledgeable about the subjects we deemed most important. And we limited the list to 30.

Narrowing down the numbers was a huge challenge. And that’s a good problem to have. It means there are a lot of people out there who are following their visions.

We hope this inspires you to follow yours.

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