Alumni Profile: Karen Hein

Pioneer in Adolescent Medicine Committed to Health and Well-Being for All

Peter Wortsman

In 2003, upon stepping down as president of the William T. Grant Foundation and moving to Vermont, “in order to be true to what I was trying to do as a doctor and a human being,” Karen Hein’70 cited the words of Mahatma Gandhi: “My life is my message.” It’s a principle she has been applying all her life. 

She brought her newborn baby to introduce him to her incarcerated young patients at the Spofford Juvenile Center, an “infamous” correctional facility for adolescents in the Bronx. She hauled a spinning wheel into her office in the U.S. Senate, where she served as a health policy fellow on the professional staff of the Senate Finance Committee, to help her unwind. 

Her controversial campaign to buck stigmas, promote safe sex, and make condoms available to New York City school kids at the height of the HIV/AIDS epidemic drew death threats and helped save lives. Her widely read book “AIDS: Trading Fears For Facts, A Guide for Young People,” included illustrated instructions on how to use a condom. 

She is equally at home in the company of her cashmere goats in rural Vermont and with her fellow members of the Green Mountain Care Board, which was appointed by Vermont Gov. Peter Shumlin to fulfill the state’s mandate to provide all Vermonters with health coverage. 

‘Being a physician has been the way I have realized my adolescent desire to be a part of change in the country and the world.’

On a morning in early March 2013, under a freshly fallen coat of snow, Columbia Medicine interviewed Dr. Hein at her home in Vermont.

A Career Outside the Comfort Zone
Her father was a Long Island family practitioner who served as the first chief of staff at North Shore Hospital. Her mother audited medical school classes but ultimately, given the social pressures of the time, gave up her dream of pursuing medicine to raise a family. “I think I became a doctor for my mother, who didn’t get to be one,” says Dr. Hein. 

Medicine called out to her early on. “The privilege of being a doctor had nothing to do with status or salary. For me,” she says, “it was all about being present at the most meaningful moments of a person’s life.”

As a child she spent a lot of time in her father’s office, intrigued by, among other things, the fetus in a jar, the anatomical models, and books on birth control. As a camp counselor, at age 17, she took it upon herself to have frank and open discussions about sex and contraception with her young charges. “I have always tried to look at things from a young person’s perspective. My experience as an empowered young person in the 1960s continues to be my motivation now that I am in my 60s.”

After completing what was at the time a two-year program at Dartmouth Medical School, she transferred to P&S, where she felt warmly welcomed by her classmates. A fourth year sub-internship at a rural bush hospital in Liberia, an experience made possible by the legendary P&S professor of parasitology and tropical medicine Dr. Harold Brown, proved “the best way to move from being a student to being a doctor.” It also launched her on a career path outside her comfort zone. 

“Generally, I’d say, I went into what I’d call ‘vacuum areas.’ I have always gone not where there was the least resistance but where there was need, where things weren’t formed and rigid yet.” 

As a young student activist affiliated with the Student Health Organization, she helped care for abandoned babies at Lincoln Hospital in the South Bronx, the subject of her first publication, “Boarder Babies at Lincoln Hospital.” Following a fellowship in adolescent medicine at Montefiore Hospital, she took her first job out of medical school as medical director of Spofford Juvenile Center, a facility for adolescents in trouble with the law. “You could say a prison for kids is not exactly a creative, open space,” she says, “but we were forced to be creative in figuring out how to give good health care to the kids in that prison.” Establishing a team approach, with the help of social workers, an ethicist/lawyer, and nurses, she and her colleagues would surprise both the guards and the young detainees who sometimes came into the infirmary completely out of control, by grabbing the kid by the arm: “Oh, you’ve got a boo boo on your hand,” allowing him to de-escalate and just be a kid. “That’s how we handled ‘New York’s most violent.’ Prison health was a vacuum area in terms of people on the outside thinking about or worrying about the kids on the inside. But I found it absolutely compelling.”

Karen Hein’70 with her herd of cashmere goats - Photos by John Douglas

At Spofford, which Dr. Hein characterized as “a sentinel site for emerging issues in youth,” among other kids invisible to society at large, she saw a severely ill 15-year-old boy with huge lymph nodes. A clinical mystery to the dermatologist who diagnosed him with a rare cancer, mycosis fungoides, Dr. Hein believes he was one of the nation’s first adolescents to come down with an as yet unnamed disease subsequently called HIV/AIDS. “While others were focusing on where the HIV epidemic had surfaced,” she says, “we were looking ahead to where it was going.”

First Comprehensive Adolescent HIV/AIDS Program in the Nation
In 1987, with the help of her husband, Dr. Ralph Dell, now professor emeritus of pediatrics at P&S, who developed mathematical models to predict how HIV was bound to be present in the adolescent population, Dr. Hein drafted a paper, “AIDS in Adolescents, a Rationale for Concern,” on the basis of which she applied for and obtained a $1 million grant from the Centers for Disease Control and Prevention to establish the Adolescent Risk Reduction Program at Montefiore Hospital, the first comprehensive adolescent HIV/AIDS program in the country, of which she was founding director. Given the stigma, fear, and denial associated with the disease and those it struck, and not wanting to scare away teens or their parents, she decided not to include the word AIDS in the name, REP (Risk Evaluation Program). “We liked the kids to have cards they could carry around and didn’t want them to be stigmatized by a card with the dreaded term AIDS on it.” The program included HIV/AIDS education, clinical care, and clinical trials.

Initially derided by some colleagues and members of the hospital administration as the director of “The Emperor’s New Clothes Clinic,” Dr. Hein managed to attract the attention of U.S. Surgeon General Antonia Novello, who attended the ribbon cutting for the new facility. Her prognosis: “Hmmm, unintended pregnancy, wonder how many of the kids are gonna be infected with HIV!” proved right on the mark. 

Teaming Up with Teens to Get the Message Out 
Rejecting the traditional notion of the doctor-patient relationship as a one-way street, in which the doctor spoon-feeds medicine and wisdom and the patient just swallows and obeys, Dr. Hein insists: “I always got my marching orders from my patients.”

Among her many patients was one young woman, Krista Black, who had been infected with HIV/AIDS by a boyfriend with hemophilia when she was 16. She contacted Dr. Hein from Ohio and became a powerful partner in de-stigmatizing the disease and promoting healthy practices. “Undoubtedly, the adult medical team viewed Krista as a problem patient,” Dr. Hein recalled in a chapter in a volume about pioneers in adolescent health and development (in press). “To them she was moody, difficult, hard to reach…a problem. What I heard on the telephone was a bright, determined young woman who was calling halfway across the country to find a doctor who would understand what she was going through.”

Dr. Hein listened. They worked together as a team for the next five years, addressing Krista’s concerns and those of a generation. “Krista taught me that young people are the best spokespeople for issues facing adolescents. She taught me that answers to complex questions about illness, death, and life are best approached through teamwork, and that the team needs to include the person, or people, most affected.” Soon after they got to know each other, she began to include Krista in her professional presentations, public appearances, and media interviews. They shared the microphone. The eloquent young woman’s pressing questions ultimately became the basis for research questions the doctor and her team began to systematically pose to their patients. Krista died at age 22. Dr. Hein is still stirred when she speaks of her. “She dedicated her short, meaningful life to becoming an HIV/AIDS educator, giving a voice and a face to the wave of the epidemic that wasn’t fully recognized until she died.”

Then in the early 1990s, with the support of NYC Schools Chancellor Joe Fernandez, Dr. Hein helped launch a push to promote HIV/AIDS education and comprehensive sexuality education, including condom availability, among the young. Considerable uproar and death threats notwithstanding, Chancellor Fernandez, Dr. Hein, and others on the AIDS Curriculum Advisory Committee together crafted an HIV/AIDS curriculum for kindergarten through 12th grade, the most controversial part of which was raising awareness and making condoms easily available to all 450,000 high school students in NYC public high schools. “We took it, as I always have: If you want to do a bold social experiment you want to learn from it.” The results were studied and written up in the Journal of the American Medical Association. “Researchers compared New York City schools with Chicago schools that had an AIDS curriculum but no condom availability. And lo and behold, New York kids used condoms more regularly.”

‘I realized I don’t belong only in the corridors of an academic health center.’

Dr. Hein remembers sharing her enthusiasm at having succeeded in promoting condom availability with an endocrinologist on staff at Montefiore, who merely shrugged. “That’s when I realized I don’t belong only in the corridors of an academic health center.”

Reaching out to the community at large, she addressed the concerns and questions of a generation at risk in their own language through “AIDS: Trading Fears for Facts, A Guide for Young People,” published in 1989 by Consumers Union, co-authored with Theresa Foy Digeronimo, a book that went on to sell more than 100,000 copies in four languages, including two versions in Spanish. With an eye-catching cover image by the artist Keith Haring, the book dispelled false gossip and insidious rumors and answered questions on the minds of many kids, such as, “Can I get HIV by sitting on the toilet in a public bathroom?” It featured a diagram of how to put on a condom over an erect penis and included a list of AIDS hotline numbers state by state and a glossary of terms with simple straightforward definitions. The book also featured profiles of young people living with AIDS as well as noninfected kids who chose to play an active role in responding to the epidemic.

Not long after publication of the book, basketball star Earvin “Magic” Johnson made headlines with his public announcement that he had AIDS. His associates contacted Dr. Hein and she served as a member of the scientific advisory board of the foundation Mr. Johnson created. 

Promoting Change, from Adolescent Medicine to Health Policy
Throughout her career, Dr. Hein has fought to combat negative societal perceptions of young people as a danger or a threat. To her it’s a vicious circle. “Attitude drives behavior, which, in turn, drives how resources are allocated and how health is regained or maintained.” In America, she points out, “We’re very positive about the military and about the Olympics, two institutions in which everybody admires young people, but in the day-to-day reality it’s still obviously an image issue, especially for kids in racial minorities.” 

In 1993 she applied for and was awarded a Robert Wood Johnson Health Policy Fellowship and took a sabbatical leave from Montefiore to serve on the professional staff of the U.S. Senate Finance Committee, chaired by New York Sen. Daniel Patrick Moynihan. She focused on assessing and recommending health insurance benefits packages, among other matters, clarifying definitions of “medically necessary care” and “medically appropriate care,” and pressing the issue of mental health and substance abuse parity coverage. “The Clintons were busy, as you know, trying to achieve health care reform through the White House,” she says, “but it’s Congress that writes the laws.” 

Working for hours on end, month after month, while others resorted to the treadmill, she decided to “bring sanity into my life” by setting up a spinning wheel in her Senate office. 

While she admits to considerable frustration that the health reforms for which she worked so hard did not pass into law at the time, the hard work paid off years later. “I am finishing the job 17 years later as a member of the Green Mountain Board. So you just never know in your life.” 

Following the conclusion of her fellowship, Dr. Hein got what she refers to, tongue in cheek, as “a case of Potomac Fever. I really wanted to stay in Washington and help foster change.” Considering various opportunities, she accepted the position as executive officer of the Institute of Medicine at the National Academies. Founded by President Lincoln, the National Academies, which includes the National Academy of Sciences and the Institute of Medicine, produces and disseminates informed policy reports to Congress. Among her innovations at the helm of the IOM, “I really pushed to produce one-page summaries of 500-page reports, so that Capitol Hill staffers would actually read them and not just file them away.” Under the presidency of Ken Shine, MD, and her direction as executive officer, the Institute wrote the seminal report, “To Err is Human,” documenting the daunting statistic that medical errors account for some 98,000 deaths a year. The report has since spawned a push for medical checklists, among other institutional safeguards. Other pivotal reports produced under her watch included “The Future of Public Health,” a series on Gulf War Syndrome, and “The New Dietary Allowances for Nutritional Requirements.”

After three and a half years directing the work of the IOM, she was recruited to serve as president of the William T. Grant Foundation, a charitable organization dedicated to “using research to improve the lives of young people.” She relished the responsibility of being able to direct millions of dollars to help shape research on positive youth development. Her goal as president was not just to fund research, but also to try to affect the societal view of young people. Among notable efforts under her tenure, the foundation helped fund the White House “Conference on Teenagers: Raising Resourceful and Responsible Youth,” chaired by then First Lady Hillary Clinton. 

Getting Back to Basics
Upon stepping down from the presidency of the William T. Grant Foundation, Dr. Hein took a long, hard look at her life and decided she wanted to make some changes. Instead of taking on a new position, she resolved to give up the trappings, the salary, the title, to get back to what brought her to medicine to begin with. Years ago she and her husband had bought an old farmhouse in Vermont and completed a major renovation in 1989. Much of the expert carpentry in the house had been done by Dr. Dell. Inspired by many trips to Mongolia and their shared fondness for Himalayan culture, they also built a yurt out back. And on a great loom upstairs Dr. Hein wove wonders, including pieces of clothing and imaginative works of art. Their children were all grown up and independent. But aside from brief family vacation breaks, they had never actually lived in the house. The time was right, they thought, to call Vermont home. Among other factors in their decision was the onset in Dr. Dell of early stage Alzheimer’s disease and their desire to spend more time together. A calling card they had designed shows the two of them levitating together, two human halves of the same whole hovering in thin air. 

And then there was the herd of long-haired American cashmere goats, a more recent addition to the extended Dell-Hein clan. Winter and summer, Dr. Hein tends to their needs and satisfies her own need to be closer to nature. “For me,” she says, “they’re a funny kind of portal, a connection between nature at large and my life among people.” 

Which is not to suggest that she bid humanity farewell, only that she altered the conditions of her commitment. She continues to serve as an active board member on various international NGOs. Among many other projects, she became involved with a small group of health professionals concerned about the lack of adequate training of individuals who rush to help in troubled areas in times of crisis, sometimes doing more damage than good. The group came up with a set of core competencies for humanitarian assistance, a document that various international aid organizations are signing. The move to Vermont also gave Dr. Hein the opportunity to participate in an important health care initiative and complete the work she had begun as a health policy fellow attached to the Senate Finance Committee. 

The Green Mountain Care Board
In May 2011 the Vermont Legislature passed and the Vermont governor signed Act 48, a landmark law that set out “to create a health care system in which all residents receive coverage from a single source, with all coverage offered equitably and health care costs contained by systematic change in the way providers of health care are compensated for their services.” Dr. Hein was named by Gov. Shumlin as one of five members of the Green Mountain Care Board, a body with regulatory authority to make binding decisions relating to the state’s health care system in an entirely transparent process. 

“System” is the key word for Dr. Hein. “It has to be a system so that all the players and parts, the 14 hospitals, the federally qualified health centers, independent practices, rural clinics, and small critical access centers, fit and function together. What’s really exciting about Vermont health care reform is that we’re looking at all those moving parts and trying to get our arms around all of it, so that it isn’t just a bunch of moving cogs but adds up to an integrated health care system.” In addition, she stresses, “For it to work, the people of Vermont have to feel a part of the system. They have to feel empowered enough to be sure they are getting from the system what they think is important.” And finally, she adds, “the system has to be affordable, affordable to individuals, to families, and to the state.”

Dr. Hein also emphasizes the need to take into account various social determinants of health, including behavior, environment, and public health. The board also acknowledges the role of nutritious school lunch and sex education programs run by the Department of Education, the promotion of bike helmets and the building and upkeep of bike paths established by the Department of Transportation, and meaningful employment and safe working conditions monitored by the Department of Labor, among other factors affecting health. “My priority is the integration of clinical care, public health, and population health,” i.e. “the distribution of scarce resources across the population.” 

Karen Hein’70 with Hillary Clinton at the White House Conference on Teenagers - Courtesy of Karen Hein '70

The board has accepted a broader definition of health. “Do no harm, is that it? I don’t think so. It’s not just the absence of disease,” Dr. Hein says. “Health also has to do with social, economic, and personal well-being. And that’s what I’m hoping our system can promote.”

Despite the negative perception promoted by outspoken and well-funded opponents of the law—“that we’ve tried this before and it never worked, that it’s just too complicated to tackle, with too much money at stake”—Dr. Hein remains optimistic that the board will surmount such attitudinal barriers and come up with a workable model. “Vermonters are very reasonable and we do work across the aisles. We can and will engage people around issues that they really care about. Most people do not want to end up in an ICU with a million tubes and no say in the matter. We’ll just naturally end up saving money and having Vermonters feel supported and in charge, not of living or dying, but of how they live and how they can feel supported when they are dying. 

“There is no one single reason, no one single villain or flaw” in the present American health care system, Dr. Hein says. “But the system has rewarded volume. Doctors and hospitals are rewarded on the basis of piecework.” While the managed care model was “all about saving money,” the Vermont model “is about improving health and saving money.” 

And though she hopes that Vermont may influence health care reform elsewhere in the country, she is averse to the notion that change should necessarily start at the state level. “I’m very dismayed by the way people refer to Vermont. Oh, it’s just Vermont! It’s such a small state! It’s such a rural state! It’s such a politically aligned state! It’s as if these were reasons why America can’t do the right thing by its people. And I believe it can.”

Reflections at the Loom
At age 69, she still wakes up at 5 a.m., as she has for most of her career. And when she’s not shuttling up to Montpelier for meetings of the Green Mountain Care Board, she takes precious time out at daybreak to knit or sit by her loom, weaving the combed cashmere hair of the herd. In this seeming lull of what she calls “a creative flow state” she manages to disengage the gears and just be. “That’s when the big ideas or solutions really take shape.

“I believe that the incentive in American medicine as it is practiced today has gotten way out of whack. What’s rewarded is not what I went into medicine to do. What’s rewarded is ‘fast.’ What’s rewarded is ‘high tech.’ What’s rewarded are big deals that yield products with a profit. I went into medicine to be able to be there at the important moments in people’s lives, to help deliver babies, and sit with people as they die and create a system of support for well-being throughout life. Being a physician has been the way I have realized my adolescent desire to be a part of change in the country and the world.”