By John Donnelly Photographs by Dominic Chavez

Foreword by Robert Redford

Striving for good health in tribal communitiesWell Being

Striving for good health in tribal communities

Well Being

By John Donnelly Photographs by Dominic Chavez

Foreword by Robert Redford

Well BeingStriving for good HealtH in triBal CommunitieS

By John donnelly Photographs by dominic Chavez

foreword by robert redford

the Johns Hopkins Center for american indian Health is honored to acknowledge and thank the countless native american peoples and tribes who have worked in partnership to develop health programming. We are also thankful to the many funders and personal contributors who have made it possible to do this work. We finally give thanks to all the people throughout the years who have worked for the Center and have contributed their time, talent and resources to enhance the health and well being so many.

Book design by Silvia lópez ChávezPublished in September 2010Printed in the uSa

Front cover photo: Jocelyn Billy-upshaw sits on a wooden log with her four-month-old baby, mya mae upshaw, in greer, ariz. Billy-upshaw helps weave native american traditions into the teachings for teen mothers in a program run by the Center for american indian Health at Johns Hopkins university.

Back cover photo: a vista south of Whiteriver, ariz.

TABLE OF CONTENTS1 FOrEwOrd by Robert Redford

4 A rELATiONShip BuiLT ON TruST Over three decades, Hopkins’ research evolved, addressing new needs of Native Americans

16 A TALE OF dETErmiNATiON How one doctor helped Native Americans – and the world

26 FiNdiNg A BALANCE One family’s experience with traditional and modern medicine

30 ThE VALuE OF ENdurANCE A perspective from a leader at the Indian Health Service

33 CrAdLiNg Our FuTurE Caring for young mothers – and their babies

39 A TimELiNE Historic milestones

41 ‘ThiS iS whO i Am’ An interview with Francene Larzelene-Hinton

44 SAViNg TEENAgErS, ONE By ONE Innovative suicide prevention program documents great need for help

50 whEN ThE STArS COmE OuT Native Vision program aims to inspire the young

53 rEAChiNg FAThErS Engaging men in raising their children

57 ‘i hAVE LEArNEd SO muCh’ An interview with Dr. Jim Campbell

60 AN iNNEr driVE Setting high goals to promote health

62 dESCENdANTS OF wArriOrS An interview with Rochelle Lacapa

67 BLESSiNgS OF A mEdiCiNE mAN Blending spirituality and healing

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Native Americans were, of course, the first and best stewards of the North American continent, living in harmony with “purple mountain majesties” and “shining seas” long before European colonists knew the Earth was round. Before the arrival of the first colonists, the traditions and lifestyles of Native Americans honored Mother Earth and her bounty. Plants and animals were sacred beings. Mindful hunting, gathering and farming fed minds, bodies and spirits. However, the European conquerers’ politics, religions and economies quickly eroded the balance of life for Native Americans. Imposed values of greed and gluttony resulted in deep losses of indigenous cultures followed by disharmony, and rampant health and social problems for the First Americans. As dominant society today begins to experience the consequences of unsustainable exploitation of the Earth, there is a quiet but rising awareness of the urgency to help Native Americans restore their traditional values, community health and well-being as a necessary link to regaining needed balance in the world’s ecosystems.

For some people, this urgency is intuitive. This is the case for a man whose work I follow with enormous hope and admiration – Dr. Mathuram (“Mathu”) Santosham. More than three decades ago, Mathu’s direct encounter with the health, social and economic inequalities shouldered by Native Americans paired with his inherent

respect for all peoples—began his lifelong quest to build a Center for American Indian Health (Center) at Johns Hopkins School of Public Health. True to the humility of Native peoples and the diverse team of individuals who’ve been drawn to Mathu and the mission of his Center, this book avoids cataloguing the scientific achievements realized by Native communities in partnership with Johns Hopkins, in spite of the fact that the work to date now saves millions of lives a year worldwide. Nor does this book wax romantic about Native histories and futures, but instead follows a perennial course of sincerity toward its “True north.”

In the end, this book presents portraits of diverse people who strain every day against enormous challenges and the monotony of naysayers to set the world back in balance. Taken together, this kalideoscope of lives reflect the light of a common purpose — renewed well-being for all peoples, including you and I and others who hold this gentle book in our hands.

I am grateful to be a part of the production of “Well Being” and hold great hope for the good it will bring to you, I, Native Americans and our world.

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FOrEwOrdby Robert Redford

This book is a tapestry of stories – vignettes of human lives knit together by hope, respect and a vision for restored well-being for Native Americans. There is also a deeper hope that flows beneath—a march toward greater well-being for all peoples—in the U.S. and worldwide. As such, the stories in this book are threads of a larger tapestry that all who read it share through our collective humanity and stewardship of our earth.

TOP: Robert Redford. Courtesy of Kristina Loggia.

4LEFT: Dr. Raymond Reid, research associate at the Center for American Indian Health.

A rELATiONShip BuiLT ON TruSTOver three decades, Hopkins’ research evolved, addressing new needs of Native Americans

“Ray, I’m headed to your neck of the woods,’’ she told Reid, a Navajo tribal member who was raised in northern New Mexico. She said she was going to Whiteriver, Ariz., the site of a new research project, and she was worried about the heat. Reid told her not to worry – Whiteriver was in the mountains and in fact, she would need a coat for the cool evenings.

The two parted ways, but Reid couldn’t stop thinking about the encounter. He was finishing his residency in preventive medicine at Hopkins and had been searching for projects with Native American communities. He had found nothing, until that moment.

Still, it seemed improbable anything would come of this discovery, a project that was to study a severe outbreak of diarrhea among children and

to look at new ways to prevent and treat it. The project director, Dr. Bradley Sack, was out of the country for the next several months and returning to Hopkins for just one day. Sack’s schedule was completely booked, and it appeared he already had a team in place, led by site director Dr. Mathuram Santosham.

But somehow Sack also had heard about Reid, and soon sought him out to join the team with Santosham. So there Reid was, a couple of days before Thanksgiving that year, driving to Whiteriver.

“It was cold, and snowy on the way down to Whiteriver,’’ Reid remembered years later. “I went through the town of Snowflake, and it was snowing in Snowflake, snowing right into Whiteriver. I went to the Whiteriver Hospital

BALTIMORE, Md. – On a hot, humid summer day in 1982, Raymond Reid was walking in a parking lot outside Johns Hopkins University when a professor of biostatistics called to him.

where they were doing the study, and I thought to myself, ʻI would like it here.’ ”

Then someone took him to the pediatric ward.

“I opened the double doors into a wide hallway and along both walls were cribs,’’ he said. “They were all lined up like a train. In each one there was a baby. I thought to myself, ʻWhat in the world is going on?’ Each of the babies had diarrhea. There was a diarrhea epidemic going on. No one had told me this was happening.’’

As Reid let it sink in, a hospital worker said to him, not unkindly, “Now, doctor, let’s get to work.’’

Thirty years later, the work goes on.

It has grown, multiplied, veered in new and unexpected directions on many reservations, brought great joy, descended into great sorrow, educated mothers to raise healthy children, taught children how to live healthy lives, saved countless lives in far-off lands, and saved them here, too.

FrOm ThE STArT, gLOBAL impACT

In the beginning, the relationship between Johns Hopkins University and the White Mountain Apache Tribe consisted solely of a research project led on the ground by Drs. Santosham, Reid, and a few others. They introduced oral rehydration solution to treat diarrhea, which

revived nearly all the babies in the Whiteriver cribs, and later babies in countries around the world. Over the years, the work of what would become the Center for American Indian Health at Johns Hopkins – now comprised of more than 80 staff members, more than half of them Native – blossomed across multiple reservations.

The work has tackled the prevention of life-threatening infectious diseases, unraveling entrenched behavioral health issues on reservations, and teaching Native people from dozens of tribes about public health strategies through university courses.

The Center’s work has followed a simple set of guiding principles: Treat everyone with respect, and ensure that the community is fully on board with any project. Its operations now include 11 field sites on the White Mountain Apache, San Carlos Apache, and Navajo Nations, known by its traditional name, “Diné Bikéyah;” ongoing projects with tribes across the United States; and three distinct program arms – infectious disease control, behavorial and mental health promotion, and training of Native peoples as researchers in the field.

“Everything we did led to the next thing – that’s the Center’s story,’’ said Allison Barlow, Associate Director at the Center who directs its growing array of behavioral health studies; Barlow, who had recently completed a masters degree in Aboriginal Studies at Melbourne University, Australia, joined the organization in 1991 as director of communications and

RIGHT: Allison Barlow, associate director of the Center for American Indian Health. 5

development. “We never had a script. What we did have was the principle that we would be responsive to the community’s needs and desires.’’

But how did one thing lead to the next? How did a Center at an elite Eastern medical institution forge close bonds with Native people in the West who were not immediately trustful of strangers? What does the Hopkins experience teach other universities and non-profit groups working in low-income settings?

It has never been easy, for either the university or the tribes. But tribal leaders say that what made the projects work was that those from the Center always kept their word, they stayed, and they produced results that had great impact on families and the community.

SkEpTiCS AT FirST “When the Hopkins people came and said they wanted to study Apaches, I was not sure,’’ said Ronnie Lupe, the longtime Chairman of the White Mountain Apache Tribe. “We have a history of people using us as guinea pigs. But I could not overlook the fact that so many of our children were dying from preventable diseases. So we finally committed to trying out an arrangement with them. We watched them very closely.’’

The Apaches liked what they saw.

“Their treatments and vaccines have really helped us,’’ Lupe said. “Now children have the opportunity to live to 100 years or beyond. What they have achieved is unbelievable.”

But who could have predicted this relationship would last?

“What’s remarkable has been this challenge of merging two very different philosophies and cultures,’’ said Dr. Katherine O’Brien, Associate Director at the Center who oversees all infectious disease work; O’Brien, born and raised in Canada, had trained at Johns Hopkins and worked for the Centers for Disease Control before joining the Center. “Both sides had to find their way. We had a number of strong leaders who shared the same vision in the field. We did it together. We found common guiding principles on why we do what we do.’’

Arriving at those principles took inspired leadership. It has come from the Center’s founder, Santosham, a medical doctor and researcher born in India who had a deep understanding and sensitivity to the need to build trust on the reservation. The leadership has been shared by Reid, another understated and soft-spoken doctor who also believes in doing things the correct way and not rushing in order to build trust. The leadership also has come from Barlow and O’Brien, peers who use different management styles (Barlow is more emotive, O’Brien more exacting), but share a genuine passion and drive to make life better, much better, in Native communities.

Dr. Katherine O’Brien, associate director of the Center for American Indian Health. 8

And most important to the foundation of the Center’s principles is that the leadership, too, has come from many in the ranks of the organization, from Native people who understand best how things work on reservations and from Hopkins researchers who brought experience from around the world on how scientific research can prevent modern-day disease and deaths. All showed the way ahead.

Yet, before the first project began, diarrheal diseases were killing American Indian infants at rates seven times the national average. In the late 1970s, no one knew the way ahead – not in Whiteriver, and not anywhere else, either.

A SummEr OF ChiLd BuriALS

Looking back at that time, the Rev. Alchesay A. Guenther, the pastor at the Lutheran Apache Mission in Whiteriver, grimaced and cast his eyes downward.

“I buried over 20 babies one summer,’’ said Guenther, now 86. “We made coffins at the carpentry shop and we buried them. Then Hopkins started its project. The next summer, I buried two.’’

Santosham, Reid and many others had introduced oral rehydration therapy (ORT) – a simple electrolyte solution now commonly known as Pedialyte – that prevented deaths and hospitalization from dehydration. They trained Native outreach workers to make home visits to

teach parents proper use of ORT, which dropped rates of diarrheal deaths among the participating tribes (Apache and, later, Navajo) virtually to zero. The findings became a major contributor to World Health Organization guidelines promo ORT to treat diarrhea in children worldwide. After a long set of studies and trials to fight diarrheal disease which came a completely new challenge for the researchers.

In the late 1980s, they began testing a vaccine against Haemophilus influenzae type b, known as Hib, a bacterium that was a dreaded disease in the United States. It was the leading cause of meningitis, which killed many babies and crippled survivors. For many pediatricians in the United States, it was the disease they feared the most. Hib vaccine, now a routine part of immunizations for infants, has virtually eliminated the disease in Navajo and Apache communities, contributing to the widespread inclusion of the vaccine in programs around the world.

It was after this high-profile trial, which led to requests to work with other tribes, that Santosham founded the Center at Johns Hopkins, formalizing a growing relationship that had begun a decade before. The formation of the Center in 1991 also helped him and his small staff organize a growing roster of projects – as well as to deepen the pool of wide-ranging experts at the university who could work on studies. And it ultimately opened the university to Native students interested in taking high-level courses on public health.

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In the late 1990s, the Center ran a trial for a vaccine against Streptococcus pneumoniae, a leading cause of pneumonia, meningitis, and blood stream infections in children; by this time, O’Brien had joined the Center, and took primary responsibility for this trial and the infectious disease control program overall. Her work at CDC, especially in epidemiological investigations in Haiti, where she led teams with members from diverse backgrounds, had prepared her well for work with American Indian communities.

O’Brien and the Center’s researchers learned the vaccine protected the group most likely to be infected with those pneumococcal strains – babies and young children – and that in turn helped stop the spread to everyone. The trial’s end result: Routine vaccination has virtually eliminated the strains of pneumococcal disease in the vaccine across all ages in Native American participating communities.

After the pneumococcal vaccine trial, the Center turned its attention to tackling other causes of serious respiratory disease in infants and children in the communities. The infectious disease team looked at using influenza vaccine among pregnant mothers to lower the risk that their newborn infants, who cannot receive flu vaccine until they are older, would get seriously ill with flu. The approach was startlingly successful and could influence vaccine guidelines here and around the world.

Every year at least one of every 10 infants in the Whiteriver community is admitted to the hospital with pneumonia or wheezing from a virus called Respiratory Syncytial Virus, or RSV. The virus is a significant contributor to an estimated 1.7 million annual pneumonia deaths among children around the world, and rates of RSV disease among Navajo and Apache infants are three times the US average. The infectious disease team – following the Center’s principle of responding to major health issues in Native American communities – started a large-scale clinical trial on preventing RSV hospitalizations among these vulnerable infants. The preliminary results have shown the vast majority of these hospitalizations can be prevented. The full study was nearing completion in 2010.

ThE ‘hErOES’ OF ThE TriALS

For Reid, the work brought many rewards. “What has been the most meaningful to me are words expressed by community individuals, mainly mothers, when they say, ʻI had an older child who had pneumonia and meningitis, and the child died. Now we have a pneumoccocal vaccine, and all of our younger kids have been healthy.’ They give that expression of gratitude,’’ he said.

Reid said he thanks them, but then adds his perspective. “I tell them, ʻIt’s not me. We could never have had these studies done to find out what worked against those diseases, if it wasn’t for these babies who took part in all the research

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we’ve been doing, and if it wasn’t for all the parents of babies who allowed the research to take part. These people, especially the babies, are the heroes.’ ”

While these trials went on, the Center began expanding in new directions – spurred by requests from the White Mountain Apache Tribe to begin work on some of the critical societal issues haunting those on the reservation: substance abuse, an upswing in teenage parenting, and especially a rise in teen suicides. Hedy Kelewood, then the head of the Apache Health Authority, met with Center representatives and in a series of meetings talked about starting programs for young parents, substance abuse prevention, and healthy lifestyle promotion.

In 1993, in a Center advisory board meeting in Wisconsin, Kelewood made a particularly strong plea. At the meeting, each participant shared their biggest concern on their reservation. When Kelewood began,“She burst into tears,’’ said Barlow, who was at the meeting and had been involved in the talks about starting new types of health interventions in the community. “She said that she didn’t know what to do – that the Tribe had 11 suicides over six months. She was imploring us to help do something.’’

In response, the Center brought together a group of Hopkins experts from across the schools of medicine, public health and humanities to meet with Apache leaders. Kelewood asked several to come to the White Mountain Apache community to investigate the problem. Dr. John Walkup, a

leader at Johns Hopkins Division of Child and Adolescent Psychiatry, became a prime ally in the work, and with Barlow and Reid conducted a series of interviews with teens, teachers, parents, and elders. Walkup, Barlow, Reid and others also conducted extensive reviews of those who had died by suicide in order to learn about triggers and risk factors.

LOSiNg CuLTurAL idENTiTy

“Through the interviews, we learned that the children felt invisible within the community,’’ Barlow said. “They were losing their positive link to their cultural heritage and to the once-strong Apache extended family and clan networks. We also were told by elders that outside media influences were very dangerous, and supplanting traditional Apache identity.’’ The reviews of records of suicides also indicated children at risk were dropping out of school; engaging early in alcohol, drugs, and other high risk behaviors; and were frequently seen in the Emergency Department for injuries or mental health problems. In the meantime, they had little contact with available mental health services.

The interviews and reviews of records helped set a new direction of work that focused on prevention of problems through promoting the natural strengths of Apache youth. “We don’t want to work downstream – after the problems happen,’’ Barlow said. “We want to find ways to develop families and communities in a way that

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will protect the majority of children and families into the future.’’

The Center began developing curriculum for young mothers and fathers to develop strong parenting skills as early as possible in child-rearing. They trained Native lay workers to do home-based outreach to promote family strengthening, child care, problem solving, and coping skills. The Center also started a program called Native Vision, in partnership with the National Football League Players Association, to promote fitness, healthy lifestyles, and cultural pride through an annual summer camp and year-round afterschool programs. Tens of thousands of children and families have been served through these programs.

Over time, the Center found that local Native outreach workers were key to filling gaps in behavioral and mental health services on the reservation.

“We’re committed to the paraprofessional model of providing care,’’ Barlow said. “Native outreach workers know the needs of their communities better than anyone, and deliver more than health services. They deliver commitment to the future of their people and are visible role models to the youth and families they serve.”

ThE giFTS FrOm AFAr

During this entire period, the Center received a range of grants from donors, including foundation, corporate, federal, and individuals. Several of private philanthropists also began giving generously – notably three women. One, Frances Velay, who was a native of France and had worked as a historian for a pharmaceutical company and had a history of giving to programs benefiting Native American communities. Ms. Velay, gave tens of thousands of dollars annually to the Center to support training and employment for Native staff working in reservation communities. A second, Thistle McKee Bennett, a pediatrician and one of the first women to graduate from Cornell Medical School, went out West with Center researchers, fell in love with the projects, and gave funding to support training and outreach programs on the Navajo and Apache communities.

The third was Ruth Thompson, a Smith College graduate who lived alone in an old hunting cabin with high ceilings in Greenwich, Conn. She had been giving $20,000 to $30,000 a year, and when she died she left a $10 million endowment to the Center to fund a graduate training program for Native Americans at Hopkins. Thompson’s bequest gave birth to a Hopkins scholarship program in which Native people enter Masters and Doctoral programs. So far, 12 have entered the programs, and six have graduated. The goal of the program is to increase the number of Native health professionals and scientists who

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return to serve their communities. The Center also hopes some will become future faculty and program directors. In addition, since 2001, nearly 200 Native scholars have received graduate training in public health science and practice at Hopkins, many of whom were supported by the Thompson scholarship endowment.

The Center also instituted career planning with Native lay health workers so that they could pursue professional training while they maintained employment. More than 300 Native lay workers have been trained and employed by the Center.

But the numbers tell just part of the story. O’Brien said that American Indian staff members and those with advanced degrees from the program have been able to experience the impact of their work beyond their communities by attending and presenting their major findings at international meetings of scientists.

At one gathering in Alice Springs, Australia, O’Brien watched one of the graduates, Rochelle Lacapa, also a former Center staff member, deliver an oral presentation before 1,000 international scientists on the results of the pneumococcal study involving the White Mountain Apache. Lacapa is an Apache.

“That was a really proud moment for her, and it was a really proud moment for me personally and for the Center,’’ O’Brien said. “I don’t think you can find anywhere in the world another group of

indigenous people who have made sucha commitment to research and embraced new knowledge as the White Mountain Apache and Navajo have. These communities are true global leaders.’’

Still, O’Brien said the Center has much work yet to do in helping develop a new generation of Native researchers. She said she hopes they can become the principal investigators on studies and the leaders of the Center. “We would love to work ourselves out of a job,’’ she said.

FOr ThE FuTurE, A LOOk AT ThE pAST

Given the Center’s past, its future is likely to unfold organically, nurtured by community will and desire. Santosham said the Center will always follow its guiding philosophy, and those beliefs include supporting leaders in the Native communities who want to restore traditional ways.

“If we could only get young people to go back to Apache ways, the ways of 100 years ago, then diabetes would not exist,’’ Santosham told a gathering in the fall of 2009 in Whiteriver to celebrate the Center’s 30 years of working with tribes.“You belong to a very proud Tribe. You have a tradition of honor, of activities, and particularly health activities. There are things you can do today that would set an example for the rest of the world.’’Santosham’s message was directed at members of the community, but the Center hasn’t been

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sitting by idly. As a matter of principle, it often incorporates cultural perspectives into its work.On the day before the speech in Whiteriver, Jocelyn Billy-Upshaw, holding her four-month-old baby, Mya Mae, briefly walked outside from a Center retreat for some sunshine.

For the Center, she was weaving traditional teachings into its program for teen mothers promoting healthy child care and parenting practices. Billy-Upshaw said she loved passing on ancient knowledge, such as the celebration of a child’s first steps.

“The young child has authority before coming into the world, in the womb,’’ she said. “That first step is the declaration of that authority.’’

She said she appreciated the Center’s decisions to build Native traditions into its work, and that teaching it to a younger generation was a gift to them.

“It’s important to have traditional stories,’’ she said. “It gives you grounds for who you are, and it sustains life for future generations.”

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“wE NEVEr hAd A SCripT. whAT wE did hAVE wAS ThE priNCipLE ThAT wE wOuLd BE rESpONSiVE TO ThE COmmuNiTy’S NEEdS ANd dESirES.’’– ALLiSON BArLOw

TOP: A vista south of Whiteriver, Ariz.

16LEFT: Dr. Mathuram Santosham, founder and director of the Center for American Indian Health.

A TALE OF dETErmiNATiONHow one doctor helped Native Americans – and the world

“I’ve got big dreams for you,ˮ Dr. Mathuram Santosham told him. “You can’t stop here. You’re a smart kid. I’ve known you since you were a baby.ˮ

The young man nodded. He had heard the stories from his mother, how this doctor helped save him when he was not yet a year old, when he had horrible diarrhea, diarrhea that was draining the life from his body. He had heard how the doctor gave him a solution of salt and sugar, as he had given to hundreds of others on the reservation, and how that had worked. And he had heard about how his mother felt so thankful that she asked the doctor if he and his wife would be his godparents.

“This is between you and me,’’ the doctor told him. “You’re my godson. I want to see you do well. The only thing that will stop

you is yourself. Guys who tell you, ʻLet’s go get a drink,’ ignore them. They only care for themselves. They don’t care for you. You need to take care of yourself. You guys are the future. And if you don’t live up to your potential, all I have done here will be gone.’’

All I have done here. The words hung in the trailer office belonging to the Center for American Indian Health at Johns Hopkins University; this was the headquarters for its work out of Whiteriver, Ariz., the hub of the White Mountain Apache Tribe. Santosham was a revered leader on the reservation. His work had not only improved the health of those here, but also the health of children around the world.

And here he was laying it on the line with the young man in front of him. Santosham was talking about measuring the impact of his work

WHITERIVER, Ariz. – The two men sat facing each other on simple wooden chairs. One already had a long successful career behind him. The other was 26 years old, and had not yet begun his, perhaps doubting whether he ever would; he had not finished high school. The elder looked at his hands, took stock of the young man, and then summoned the ghosts of his past.

through the younger generation of the Apache, and through this one person. This was between the two of them.

If you don’t live up to your potential. And what if the young man didn’t? What did that mean? So much had been accomplished. But so much more had to be done. The elder’s ghosts were in the room. They were repeating lessons once told him – a young man could succeed if he put his mind and will to it. And if he didn’t?

Gone. In a corner of the room, the young man’s mother watched the doctor and her son, quietly weeping.

“Believe in yourself,’’ Santosham said to his godson.

Mathuram Santosham was born in South India in 1944, the third and last child to Flora and John Wilfred Santosham, delivered by his grandmother. He was a child at a time of great promise for India. In three years, the two-century-long British rule of India would end, and John Wilfred was poised to reap the benefits. He and Flora, along with many Indian Christians, had received a good education during the time of British control, thanks largely to schools run by British missionaries. John Wilfred had obtained a Master’s degree, and two years after the British left, he had secured a prestigious job with the Indian Foreign Service.

When the youngest Santosham, known as Mathu (pronounced MA-too), was five years old, John

Wilfred received his first diplomatic assignment to Nepal. It wasn’t a glamorous posting. In fact, the couple wasn’t certain whether to accept. The journey to Kathmandu was dangerous – a week’s hike from the India-Nepal border – so the couple prayed before deciding to go. They made the journey without incident, and once there, John Wilfred shone in the job, helping lead to many more foreign assignments.

For the youngest in the family, it would be a stable three years in Nepal, and unbeknownst to any of them, it would also be the last time the family would live together. His father’s next assignments, the French colony of Pondicherry in South India and Bonn, Germany didn’t have good local schooling options in English that they could afford; Santosham first lived with relatives and later in a boarding school through the end of high school. From age 12 to 18, he and his older brother attended school in Scotland; for the younger Santosham, the beginnings of his education were extraordinarily difficult – he was far behind classmates because he had started school late and had not caught up.

Several months after he arrived in Scotland, Santosham took a national exam that determined whether he would be allowed to get at least 12 grades of education, or whether he would stop at grade eight. It didn’t go well. His teacher, Mrs. Grant, told him that the headmaster wanted to see him about the exam. She accompanied him to the office.

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‘yOu COuLd BE AN AuTO mEChANiC’

The headmaster told him that he had done very poorly in the exams – at the bottom of the worst students in Glasgow. It meant, the headmaster said, that his formal schooling would likely stop soon.

“You could become a carpenter or an auto mechanic,ˮ the headmaster told the boy. “What do you want to be?ˮ

“I want to be a doctor,ˮ the young Santosham told him.

The headmaster and teacher exchanged glances. Mrs. Grant’s face fell. The headmaster asked Santosham to return to class. In his absence, his teacher, he would later learn, argued forcibly that the boy be allowed a second chance. When she returned to class, she had regained her composure, and afterward she told him, “Mathuram, there is still hope.” A few days later, he heard that the headmaster and Mrs. Grant had appealed on his behalf to the School Board to allow him to repeat a year and take the test again after that. The School Board, his teacher told him, had accepted the appeal. He would get another chance.

In the months after Mrs. Grant’s victory on his behalf, she worked with him during his lunch hour and after school, encouraging him to push ahead and keep focused on his dreams; it helped Santosham in the national test earn a mark that qualified him for high school. He had learned a

major lesson on the importance of a mentor, and the value of helping out one person.

LESSONS FrOm hiS pArENTS

During this time, Mrs. Grant wasn’t alone in giving him strength. Santosham also drew inspiration from his mother, who wrote him a couple of times a week first from Germany and later from Ceylon, now Sri Lanka. She told her boys she was always praying for them, that she missed them dearly, and that she hoped they were going to church.

“I always felt my parents’ presence,ˮ Santosham recalled decades later, driving in northern Arizona, on Apache land. “Her letters meant so much to me.ˮ

And over the next several years, through his visits with his parents during the summers or school breaks, it wasn’t just her words that sustained him. He also watched how they acted – especially with others. Because of his father’s position, they had workers who cooked meals and cleaned for them, and his household always numbered more than immediate family.

“To my mother, they were family,’’ he said on the drive on the reservation. “She always said that you have to treat everyone as an equal. That was basically Jesus Christ’s philosophy, which was to treat everyone equally no matter their religion or background. My mother would always tell me, ʻWhat’s the point of faith if you don’t put it to use?’ˮ

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TOP: Oliver and Phoebe Nez, left and center, show family photographs to Santosham. BOTTOM: Francene Larzelere-Hinton (left), kisses her daughter, Jeona, 5, as Dr. Mathuram Santosham (right), hugs Larzelere-Hinton’s son, Juanito, 2, at the Alchesay Beginnings Child Development Center in White River, Ariz.

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By the time he had reached 18, Santosham’s foundation in life was set. He had experienced the importance of someone believing in him. He was committed to live as a true Christian. He trusted God. And he trusted, too, he would become a doctor. He was determined, and he was grateful.

In 1970, at age 26, Santosham earned his medical degree in India; during medical school, he had met and fallen in love with a younger classmate, Patricia James, whose studies would eventually lead her to become an anesthesiologist. After graduation, Santosham applied for an internship at the Church Home and Hospital in Baltimore, which had advertised that it was a “stone’s throw away from Johns Hopkins.ˮ The implied Johns Hopkins connection appealed to him, and he moved to Baltimore for the job. One year later, he returned to India to marry James just before her graduation, and by early 1972, they were in Baltimore, eager to start their new lives together. Pat Santosham began her residency at Johns Hopkins. For Mathu, the internship at Church Home was frustrating; the hospital seemed much farther away than the one block that separated it from Johns Hopkins. He wanted to be a pediatrician, and someone put him in touch with Dr. Harold Harrison, a doctor-researcher at Baltimore City Hospital. Harrison was an international expert on diarrheal diseases, and for years had used a ground-breaking sodium and glucose solution to treat children with severe diarrhea. Eventually, the World Health Organization recommended its use. But by the

late 1970s, most countries had not adopted the recommendations for the mixture called oral rehydration therapy (ORT). Many practitioners were avoiding it because they believed it contained too much sodium.

For the Santoshams, the end of the decade established the frame of their lives. They started a family (a boy, Vasanth, was born in 1976, and Shireen, a girl, was born in 1978) and their career paths. In 1979, Santosham decided to take a job in Calcutta for a research project on diarrhea conducted by Johns Hopkins. But the Indo-Pakistan war broke out soon after, and all US-based projects in India were asked to close down.

FrOm iNdiA TO AN iNdiAN rESErVATiON

Santosham had to scramble for work, but he received a break. While he was working with Harrison, he met Bradley Sack, a well-known scientist and teacher at the university who was working on diarrheal diseases. Sack was starting a five-year study on diarrheal diseases research on the White Mountain Apache reservation in Arizona. He asked Santosham if he would get it going – at least for its first year. Santosham accepted and moved there alone at the end of 1980. Pat, in India with their two young children, flew to Baltimore (where she picked up three suitcases) and then to Phoenix. Three decades later, she still remembered the day she arrived, March 1, 1981.

Santosham was waiting for her with a government-issued, Chrysler beige pickup truck;

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he positioned the suitcases into the truck’s open bed, and started on the four-hour drive to the reservation. He had never before driven a stick-shift vehicle, and even his two-and-a-half year-old daughter sensed something amiss.

“All four of us were crammed together in the front seat, and it was getting dark,’’ Pat remembered. “It was gloomy and it started snowing, and the suitcases were getting wet. Everything looked stark and gray. I remember thinking, ʻWhat am I doing here?’ˮ

Santosham tried to cheer her up, pointing out things along the way. “Look at the horses over there, running free,’’ he said.

They finally arrived at their prefabricated house, a trailer sitting on bare earth. Inside, the house was empty. And, they immediately realized, it had no heat. A neighbor came over with a heater and blankets, and they cuddled that first night, cold, under blankets.

It would turn worse. In a few days, Shireen came down with pneumonia. She turned seriously ill, and Pat, for the second time in a few days wondered why they had come. Shireen, recovered within a week. Furniture, beds, and curtains, all ordered out of a Sears catalogue, began arriving. And they began adapting to their new life, little by little.

For Santosham, managing the clinical trial on oral rehydration therapy was a huge job. He needed to persuade everyone from tribal leaders to mothers that the work was vital to saving lives

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The last issue – feeding children – became critical. Santosham and his researchers knew that children in poor countries often had diarrhea six to eight times in a year. At the time, doctors and other health workers told mothers not to feed their babies or children anything during the diarrhea bouts. It meant, the Hopkins researchers calculated, that these children ended up not eating 15 to 25 percent of their early years. So they started experimenting with feeding children four hours after taking the ORT and found it brought children back to health earlier. The group published their findings on both the optimal ORT mixture and the importance of feeding children after taking ORT. Those findings greatly influenced the WHO recommendations, and became policy in poor countries around the world. The Apache, through the trials, had made medical history.

ChANgiNg hEALTh prACTiCES gLOBALLy

This would become the Center’s pattern: addressing a life-threatening infectious disease problem among Native children, introducing a promising treatment or vaccine to try to stop it, testing the approach in a clinical trial, and publishing results that would change global practice. Each intervention was fraught with difficulties, but still, as surely as Santosham’s belief in himself, each would advance, saving lives again and again.

After the ORS and vaccine trials for drugs that prevented meningitis and pneumonia, the Apache and Navajo tribes thanked Santosham for the work, but also asked him to look beyond infectious diseases. They asked him about other pressing problems – the need for mental health services, the high rate of suicides, the large numbers of teen mothers, to name a few. Santosham went back to Johns Hopkins, and, with the support of the leadership in the School of Public Health, formed the Center for American Indian Health in 1991.

Establishing a Center allowed Santosham to expand the work and draw in other experts at Johns Hopkins. It also allowed for the expansion into training Native scholars in public health professions; hundreds, on scholarship, have enrolled in courses at the School of Public Health. For the new work in behavioral issues, the Center stuck to core principles: Win the trust and support from the communities through developing a strong partnership; get out into the communities with teams of American Indian workers; address issues that are relevant and high priority for the community; and develop rigorous ways of measuring whether new interventions succeeded or failed.

No longer was the Center only rooted in Santosham’s specialty – infectious disease research. The staff grew to include specialists in many fields. But the Center remained rooted in his philosophy. He told everyone they must treat all communities and all people, no matter their social or economic status, as equals and with

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respect. John Wilfred and Flora’s teachings were alive and well.

AN EmOTiONAL EVENiNg

On the evening of Oct. 13, 2009, Santosham gathered the Center’s staff at an inn in Greer, Ariz., about a 75-minute drive from Whiteriver. All that day, nearly 60 members of the Center staff had met to discuss future directions – from infectious diseases, to behavioral interventions, to higher-education training for American Indians. The discussions had gone well. New ideas were aired and debated.

Though, that night in Greer, carried much meaning for Santosham and his staff. The next morning, the Center’s staff they were expected to join hundreds of Apache tribal members for a ceremonial walk and gathering to celebrate Santosham’s 30 years of work on Indian reservations.

Santosham had spent the past day in Whiteriver, meeting old friend after old friend, and he was looking back at three decades of his life.

“Today has been full of very emotional experiences,“ he told the group. “The memories just choked me up. I was talking with people I had not interacted with for 20 or 30 years in some cases.’’

One of those, he said, was his godson. “It brought home the fact of what we’re not yet

of children. At the time, the Apache reservation was suffering through an epidemic of severe diarrheal disease.

‘SO mANy dEAThS’

“So many kids were dying of diarrhea,’’ Santosham said.“Those first few months, I saw so many deaths.ˮ Pat said the situation was extraordinarily difficult for families. “The first summer we were there, I wept with those families, seeing those little beautiful Apache babies dead and buried,ˮ she said.

Santosham worked in the Whiteriver hospital and helped train Native outreach workers to include oral rehydration solution (ORS) when they found children with severe diarrhea. Gradually, the practice spread from the hospitals to the communities, and the rate of diarrheal deaths in the Apaches who received ORT, dropped to near zero. The Santoshams stayed past that first year –– and ended up living in Arizona for nearly six years, until 1986. The first two years were on the reservation, while the remainder was just north of the reservation, in Lakeside, in order for Pat to be closer to her work as an anesthesiologist at a hospital there. The studies to prevent diarrheal deaths expanded to a series of trials, which included use of different antibiotics, different quantities of sodium and glucose in the ORT mixture, and an examination of whether to feed children after they receive the oral rehydration mixture.

TOP: Celebrating the 30th anniversary of the Center for American Indian Health in Whiteriver, Ariz. BOTTOM: Dr. Santosham was welcomed by Queenie Nashio during the celebration.23

done working with and for this community. My godson dropped out of school in ninth grade. I felt really badly hearing this. I felt I had dropped the ball. But he and I are going to work together.ˮ

“I asked him if he would finish his high school degree and he told me, ʻI will try.’ I told him there was no such thing as trying. I told him the story of the movie Star Wars and Yoda. Do you remember what Yoda said when someone said he would try?’’

Santosham looked around the room.

“Yoda said, ‘Do or do not. There is no try.’’’Some laughed, some were quiet. “What I see on the reservation is many people saying ʻOh, I will try,’ not ʻI am going to do this.’ Once you decide to do something, you must do it,’’ he said.He told the group about being in a boarding school in Scotland. “I had no parents there,’’ he said. “I had nothing. But I had a teacher who believed in me, and because of her I finished high school. My godson needs someone like that.’’

Someone like Mrs. Grant. Someone like himself, or someone in the audience.

“If only we can provide hope for these kids,” Santosham said. “There is this sense of hopelessness with so many of them. The thing is, we all have this responsibility, whether it be in the inner city of Baltimore, or on the Apache reservation.ˮ

FLy LikE AN EAgLE

Santosham ended with a story about a Native runner – Billy Mills, a member of the Lakota (Sioux) tribe, who ran on the US Olympics team in 1964 in the 10-kilometer race. Mills, considered a middle-of-the-pack runner, passed through the 5-kilometer stage and remembered something his father had told to him years earlier before he died. “You must fly like an eagle,ˮ his father said.

Mills took the lead, and then lost it a few laps from the finish. Going into the final 100 meters, Mills, in third place, with knees pumping high and arms lunging in stride, surged to win.“That’s what we need to do, to inspire these kids,ˮ Santosham said. “We’ve done great things, tremendous things. We can do more. Pick that kid. Make a deal with that kid. Stay with that kid until he flies like an eagle.ˮ

Santosham, at age 66, stays incredibly busy. His work now has become more diverse than it was as a young doctor on the reservation. He gives speeches and attends conferences around the world, and he is spending more time in India trying to persuade the government to improve health interventions for children.

He has had success. But on the reservation, his touchstone, he feels he has much more to do.

“My biggest ambition is to build capacity among the young American Indians,’’ he said. “I want to see the next generation become leaders not only

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in their community, but also around the United States. They need support – financial, moral, academic support. I want to be a mentor to these people. I want to inspire them.’’And that includes his godson. After their meeting, Santosham called several times before reaching him. He talked again to his godson about the importance of going back to school, and his godson agreed that he would do so – not just try to do it, but to do it.

That was important to Santosham. “I will do everything I can for him,’’ he said.

“my BiggEST AmBiTiON iS TO BuiLd CApACiTy AmONg ThE yOuNg AmEriCAN iNdiANS.”– dr. mAThurAm SANTOShAm

26LEFT: Beverly Gorman, who has worked for 15 years in the Center for American Indian Health’s infectious disease programs, and who enrolled five of her children in vaccine trials.

FiNdiNg A BALANCEOne family’s experience with traditional and modern medicine

Gorman’s husband Emerson, wasn’t so sure. He is a Medicine Man, and had always relied on traditional ceremonies and herbs to protect his children and others from diseases. Beverly Gorman, though, believed that the Hopkins’ trial not only could help protect their newborn, Perry Lee, but also potentially many, many other children if the vaccine proved effective.

On the fifth visit from the Hopkins’ outreach worker, the Gormans decided to enroll their son. The trial wasn’t easy. It involved four vaccinations and drawing blood seven times over the first two years of the boy’s life. Perry Lee, his mother said, still remembers it to this day. “Perry says, ‘They told me they were only putting a butterfly on my hand, but I saw my blood come out,’” Beverly Gorman said.

The experience was a positive one, and the Gormans, a family that deeply respects both traditional and Western medicine, became an integral part of Hopkins’ work on in Native communities over the next two decades.

Bev, as everyone calls her, was hired as a research assistant, helping enroll other families in trials, as well as her own family members. “I wanted the parents and the community to understand how Johns Hopkins’ vaccine trials helped all of our children’s health – whether on my home visits, or presentations, or during chapter meetings where we can communicate to our elder and traditional families,’’ she said.

In the spring of 1989, Beverly Gorman had just given birth to her third child. A field worker from the Center for American Indian Health at Johns Hopkins University asked her and her husband, Emerson, if they would be willing to enroll their newborn in a trial for a vaccine against Hib disease. The disease was causing abnormally high cases of meningitis and pneumonia among babies in the community.

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ENrOLLiNg ONE, TwO, ThrEE … Six

The Gorman’s next four children, Nathanial, Phavion, YakaiYastai, Naiyahnikai, along with two of their grandchildren, Nizhoni and Kahlil, also became enrolled in several Hopkins trials including Hib vaccine, pneumococcal vaccine, rotavirus, and respiratory syncital virus (RSV) among others.

“When I put my child on the program, I saw other moms concerned about their children. You could see in the hospital and the community, children who were sick from these illnesses and diseases,” said Beverly Gorman, 51. “You want these little ones to be healthy and you try to do all you can to protect them. That’s what we are doing.”

Many parents had questions about whether to enroll their children.

“I’ve had reluctant parents,” she said, “They want to know why this is being done on a reservation, to Native people, whether we are using them as a guinea pig. I tell them, if you go to a hospital with a sick child and tell the doctor what is wrong, the doctor will prescribe a medicine. You take it because you trust the person. In this case, we are giving you all the information, how to prevent a disease, and it is up to you to decide. It’s hard to be a mom and dad, for you to decide what is best for your child. The trials were one way where they didn’t have to wonder about coming down with this illness.”

FiNdiNg A BALANCE

Emerson Gorman, 58, grew to respect this protection as well. Sitting in a restaurant one night in the winter of 2010 with their eldest daughter, YakaiYastai Nanabah – a traditional Navajo name that means Morning Star-Waiting For the Morning Dawn-Return from War – he said he has grown to understand that traditional medicine didn’t have all the answers to treating diseases, and that childhood immunizations in particular could save lives.

“The traditional side can only do so much, and the Western side can only do so much,” he said. “Sometimes there has to be a connection and balance so that the person can really heal.”In the Gorman family, this balance has been passed from the parents to their children.

YakaiYastai, 18, is an example. Starting from the age of nine, her father noticed that she also possessed the gift of being a traditional Healer. She said she is trying to learn all she can from her father. And while that continues, she also plans to enroll in college in the fall of 2010, where she hopes to start pre-med courses. She wants to be a pediatrician.

For Beverly Gorman, her 15 years working for Hopkins hold deep meaning for her, and it all springs from trying to protect the very young, from her eight children to all children in Native communities.

“yOu wANT ThESE LiTTLE ONES TO BE hEALThy ANd yOu Try TO dO ALL yOu CAN TO prOTECT ThEm. ThAT’S whAT wE ArE dOiNg.”– BEVErLy gOrmAN

“I always wished I could have helped my children more because there are diseases that can be prevented,” she said. “That is what we’ve been doing on the reservation for many years—stopping diseases before they ever happen.” Beverly says, “I am very happy and grateful my children are born healthy and staying healthy, and living their traditional values.”

30LEFT: Dr. Phillip Smith, Director of Planning, Evaluation and Research for the Indian Health Service.

ThE VALuE OF ENdurANCEA perspective from a leader at the Indian Health Service

ROCKVILLE, Md. – Dr. Phillip Smith, a Navajo Indian, remembers when he first learned of Johns Hopkins University public health researchers’ work in Native American communities. He was a family medicine physician in Tuba City, Ariz., and had a busy practice of tending to the well-being of several thousand patients.

The researchers came to him with a request. They wanted his help and blessing to start a clinical trial for a possible Hib vaccine – which, if it worked, would protect children under five from Haemophilus influenzae type b, a bacterial infection that causes meningitis and pneumonia. Smith wasn’t so sure. He worried about potential risk to those enrolled in the study, but he also was intrigued because Hib disease was causing an abnormally high number of deaths among Native American children.

He first had questions. “We did not know what the vaccines would do. And why did they pick us?’’ said Smith, who is now Director of Planning, Evaluation and Research for the Indian Health Service. The IHS is a federal agency with 17,000 workers responsible for health on reservations.

The Johns Hopkins researchers explained that they wanted to start on the reservations because of the high incidence of the disease. That persuaded Smith, and it became the start of a relationship that has continued for nearly three decades.

The researchers not only proved themselves at that moment, Smith said, but they continued to live up their word in subsequent studies and field work, which was done in close collaboration with tribal leaders and with the Indian Health Service.

ThrOugh ‘ThiCk ANd ThiN’

“For me, the principal reason why I think the Center for American Indian Health at Johns Hopkins has been a success is one word: trust,’’

he said. “The people were trustworthy. And how they became trustworthy is that they stayed. They stayed around through the thick and the thin of things.’’

Smith said that from the perspective of Native Americans living in tribal communities, “If you know someone is from Johns Hopkins, you know they are going to be there. They are going to be there when times are bad and times are good.’’

For Smith, 61, whose career in Native American health spans both hands-on field work and experience around senior policy circles in Washington, D.C., one of the most endearing moments in the long partnership with Johns Hopkins were the early days when the doctors also lent a hand.

He worked alongside several Hopkins doctors, including Mathuram Santosham and Ray Reid, in children’s wards and emergency rooms.

“These physician-researchers used their expertise in rolling up their sleeves in helping out in clinics,’’ Smith said. “That endeared them to people. They showed their interest was genuine.’’

RIGHT: Vista outside of Tuba City, Ariz.31

“ThE pEOpLE wErE TruSTwOrThy. ANd hOw ThEy BECAmE TruSTwOrThy iS ThEy STAyEd. ThEy STAyEd ArOuNd ThrOugh ThE ThiCk ANd ThE ThiN OF ThiNgS.’’– dr. phiLLip SmiTh

RIGHT: Brandii Cowboy, a family health educator at the Center for American Indian Health.33

CrAdLiNg Our FuTurECaring for young mothers – and their babies

But gradually, over a period of months, Shannon Johnson began to look forward to Cowboy’s visits – and her lessons on being a good mother. Cowboy taught her a variety of approaches for raising her children, and when the young mother started seeing improvements in her relationship with her young girl, she started feeling much happier.

“I changed a lot,’’ said Johnson, 21, sitting in Cowboy’s car outside her house on a winter afternoon – nearly three years after Cowboy’s first visit. ``I changed my attitude, and I changed the way I raised my kids. I probably learned more than 100 things.’’

Johnson has been one of 322 young mothers enrolled in Johns Hopkins’ Cradling Our Future study, testing a curriculum called “Family Spirit,” which involves frequent home visits and detailed lessons on child care and parenting for Native American young mothers. The purpose of the study is simple: to measure whether the

Family Spirit program visits and lessons improve the lives of both mother and child, resulting in long-term benefits to the children.

The program, which has evolved since 1998, and is now in a final National Institutes of Health evaluation trial ending in 2010, has been operating out of the Center’s offices in three Arizona reservations, including Cowboy’s base in Fort Defiance (Navajo); Tuba City (Navajo); and the San Carlos Apache and White Mountain Apache reservations.

‘A grEAT prEVENTiON STrATEgy’

“We are banking on the premise that positive parenting in early childhood is a great prevention strategy for later problems – helping prevent alcohol abuse, drug abuse, depression and anxiety, even suicide prevention,’’ said Allison Barlow, associate director of the Center for American Indian Health. “We are working as far

CRYSTAL, N.M. – At first, the young woman didn’t want anything to do with Brandii Cowboy, a family health educator at John Hopkins Center for American Indian Health. She wouldn’t even answer the door.

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“Because I am a single parent, I can see and understand their struggles,’’ she said. “We have a lot of hardships put upon us, especially these young moms.’’

Operating out of the Center’s Fort Defiance office, near the New Mexico border, Cowboy’s clients are spread far and wide – sometimes more than a 90-minute drive away.

“We deal with a lot on this job – sometimes driving an hour but the mom isn’t home,” Cowboy said. “We get flat tires. We get lost. We deal with dogs. We are greeted with angry relatives.’’

AFTEr ThE BAd COmES ThE gOOd

But then there are breakthroughs with the mothers, such as the one with Johnson, and that makes all the difference.

“What’s good about this is that it’s one-on-one,’’ Cowboy said. “We are teaching them so much – basic infant care, parenting skills, everything from things early in pregnancy to the child’s third birthday.’’

The family health educators have visited weekly or monthly, depending on how old the child is; they have also been available to transit mothers, who have limited transportation, to important appointments – or even to just get them out of the house. Every six months, independent health evaluators, who are also from the communities and employed by the Center, have gone to the

mother’s home to complete a detailed series of questions to measure the mother’s parenting skills, her attitudes, and the child’s health and development.

One of those evaluators has been Tanya Jones, who also works out of the Fort Defiance office. Jones, like the other independent evaluators, does not know whether the mother is receiving the lessons or not. Sitting in a room at the Center’s trailer with binders for each teen mother, numbering 1001 to 1096, Jones said she regularly sees the wide range of challenges facing the mothers.

“They are always moving around,’’ she said. “Sometimes they live with their grandmother, sometimes with their mother, and some are living on their own, trying to get their GED or going back to school. Many want a sense of independence.’’

Most problems, she said, revolved around poverty.

‘LOVE ANd NurTuriNg iS ThErE’

Despite these hardships, the majority of the mothers have told her they were happy being a mother – often a nine or ten on a 1-to-10 scale, with 10 being very happy. “The way they interact with the child shows they really love him or her,’’ Jones said. “They know how to love them even though they don’t have all the advantages or money in the world. That love and nurturing is there.”

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as possible upstream, by intervening with the youngest expectant mothers, to help them change the trajectory of their lives, their children’s lives, their children’s children’s lives. The goal is to break the cycle of inter-generational behavior challenges and despair.’’

Barlow said the local Native family health educators, “are the fuel for this effort. We give them tools, training and employment—and they become the change agents in their communities to renew positive family life as the root of indigenous strength and well-being.’’

In a pilot study preceding the Cradling Our Future study that also included home-based education for mothers, Johns Hopkins’ researchers found that enrolled mothers knew far more about raising children than mothers who received no lessons, and exhibited more involvement and more positive mental health. The pilot project also found that local paraprofessionals – basically, trained Native community members – had a great capacity to engage and educate local teen mothers. In other words, a dearth of American Indian health professionals did not appear to hinder such a study.

The expanded study has focused on Native teen mothers, ages 12 to 19, because they are arguably one of the most vulnerable and forgotten groups in a society that already suffers high rates of drug abuse and poor health and behavioral outcomes.

Before launching the study, Johns Hopkins researchers examined and drew lessons more

than 40 other home-visiting programs in the last three decades around the world that also had targeted young, high-risk mothers. These programs led to improved parenting and home environment; increased support for mothers from other family members; increased birth spacing; improved health of children; prevention of child abuse and neglect; and a decrease in mothers’ drug use.

uSiNg ONLy NATiVE wOrkErS

For the “Cradling Our Future” study, the Center tailored its work to the realities on the Navajo and Apache reservations. Some examples: a Native Advisory Board made adjustments to lesson plans that were based on American Academy of Pediatrics’ guidelines to reflect traditional values; the Center used only Native workers for its home visits because outsiders wouldn’t be as welcomed as home visitors; and unlike other studies that relied on nurses making the home visits, the Center used paraprofessionals due to the shortage of Native nurses.

One of them has been Cowboy, 37, a plain-speaking, single mother of two who knew well the difficulties facing these young mothers. Cowboy had worked continuously at the Center since 1997 on a variety of studies, including vaccines to fight rotavirus and pneumococcal diseases. But the study on teen mothers hit home for her. She is the mother of Wyatt, 13, and Taylor, 10; she had Wyatt when she was 23. When he was born, she had often felt at loss about what to do with him in various situations.

37ABOVE: Cara Sanchez and son Aiden Ethelbah outside their home.

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But she also has seen desperate situations. “Some mothers are just zoned out, and you can tell the child is not getting enough attention from the mom,’’ Jones said. “The child is more fussy, and the mom is exhausted and tired – her hair is not done, or she has just gotten out of bed and doesn’t want to do anything. She is depressed.’’Cowboy said most of her teen mothers are very engaged – and led happy lives. As she drove to Johnson’s house, along roads with eight-foot-high snowbanks from a near-record storm in January 2010, Cowboy said that the process of teaching the mothers takes time to work well.“It’s hard in the beginning for them to trust us, to open up to us. Some, like Shannon, wouldn’t even open up their doors to us,’’ she said. “But now I go to a home and sit for an hour and they will tell you everything. Some of us are invited to baby showers, weddings, graduations. Even the parents who were not open to us in the beginning, now they are calling you to come to help.’’

Johnson said she first learned some basics about how to feed her daughter. “I learned I shouldn’t

give them honey or sweets, or junk food,’’ she said. “I even told a friend of mine who had a one-year-old who was fussy and crying all the time, that she should stop giving him fried bread with powdered sugar. She didn’t know that.’’

Beyond that, Johnson, who has three young girls and gave birth to the first at age 15, said she learned not to spoil her children.

NO mOrE SwEET TOOTh

“Ever since I got in the program, I’ve put my foot down,’’ she said. “I used to give them candy in the morning. Now, I don’t do that anymore. When my oldest complains, I give her a timeout instead of laying a hand on them. It’s working well – she doesn’t have tantrums much.’’Johnson’s next goal will be to get her GED, or high school equivalency, toward a career as a nurse. She said Cowboy has helped transform her life.

“I can tell her anything – things I can’t tell my mother,’’ she said.

“I used to bug you all the time,’’ Cowboy said.“Now I’m calling you,’’ Johnson said. “I’m saying, ʻWhere are you? Why aren’t I hearing from you more often?’ˮ

The two laughed.

“When this ends, I can still call you, right?’’ Johnson asked her.

“You better,’’ Cowboy said.

ABOVE: Rholanda Moody and daughter Kaylee Moody.

Early 1980s 19961995

A TimELiNE: hiSTOriC miLESTONES

Early 1980s: Prevention of infant deaths from diarrhea by introducing Oral Rehydration Therapy (ORT).

Early 1990s

Early 1990s: Launch of mental health and substance abuse prevention work with White Mountain Apache.

Mid 1990s

Mid 1990s: Rotavirus vaccine trial.

1996: Launch of Native Vision youth development program, in partnership with NFL Players Association and the Nick Lowery Charitable Foundation.

1995: Launch of Share Our Strength home outreach program with first-time mothers to promote breast-feeding and nutrition.

1998

1998: Launch of Family Spirit, providing parenting education in the homes of teen parents.

Late 1990s

Late 1990s: Attacking pneumococcal disease burden with PCV7 trial.

2004

2004: Preventing RSV disease.

2004: Launch of Celebrating Life program to prevent youth suicide.

2009

2009: 30th year celebration.

Early 1990s: Elimination of Hib meningitis.

2001

2001: Training American Indian health professionals and scholars.

2010

2010: Fathers Launch

ABOVE: Francene Larzelene-Hinton, director of the Native American Research Center for Health.41

‘ThiS iS whO i Am’An interview with Francene Larzelene-Hinton

Francene Larzelene-Hinton, 36, a White Mountain Apache, mother of four, is the field director for the White Mountain Apache-Johns Hopkins Native American Research Center for Health (NARCH) in Whiteriver, Ariz. Here are excerpts in an interview in early 2010 about her work.

Q: What kind of work have you done at the Center?

A: I’ve worked on a lot of different things – a training component of NARCH, then a research component of it, among other projects. I first started working on a project involving the pneumococcal vaccine, which is interesting because my oldest daughter had passed away when she was almost three. The autopsy showed she had died from Streptococcus pneumoniae. For me it was full circle with this particular disease – first the experience with my daughter and then one of my first projects at Hopkins.

Q: How did you feel about that?

A: I had a sense of peace because it gave me a better understanding – I had to read what pneumococcal was and how it affects the body. It just gave me new knowledge about what she had passed away from. You are never OK with losing your child, but I guess I was proud to work on that particular research project because it was personal. It is a preventable disease, and we have worked on creating some interventions and awareness for the community.

Q: What has been the impact of the studies?

A: They have had a far-ranging impact. Novalene (Goklish, field program coordinator of the Center’s Celebrating Life and Empowering Our Spirits programs, which work on prevention of suicides) and I present all of Hopkins’ projects here on the reservation to the Health Advisory Board and the Tribal Council. They will ask us how this will benefit the community and other populations. We do our best to tell them how it will benefit not only our community, but communities around the world.

The Advisory Board and Tribal Council are foremost concerned about the communities here. But whatever we can do to help save a life, whether it be here or another place around the world, they know that the purpose of our research will be a benefit in some way to someone.

Q: Could you describe your relationship with the board and council?

A: There is trust with that relationship. Novalene and I are Tribal members born and raised here. These are our people, and we only want what is in the best interests of our people. We are honest with them. We know they are entrusting us to inform them, because they don’t work on research and we do.

Q: You are fully in two worlds, how do you balance that? Or is it natural?

A: I think it is natural. I think it falls back to how we were raised and the morals that we were taught and how we view our culture and history as well as the modern culture of the United States. I was born and raised here, but I was also raised off the reservation. For several years in elementary and junior high school, I lived in Boise, Idaho, with my mom who was going to college at the time. I interacted with a lot of different people, a lot of different cultures, groups. I guess I try to look at everything from all points of view. But I know that I am White Mountain Apache. This is where my home is. This is who I am, part of me, and you are taught that you always know where you come from and know who you are.

I know the struggles our people have with everything, whether it be health, finances, or something else in modern-day life. I also know the projects I work on are very important and they will benefit our people. Looking at the traditional side of our life, we understand how our elders and others who are very traditional view things. Maybe because I participate in traditional ceremonies, I have a better understanding of that – that the ceremonies that go on are sacred to our people, and that’s something we have to preserve and also take care of. I feel that both the traditional and modern ways can mesh in a way that can work for everybody.

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44LEFT: Two friends hug at dusk in their neighborhood in Whiteriver, Ariz.

SAViNg TEENAgErS, ONE By ONEInnovative suicide prevention program documents great need for help

She confided this to a friend over her cell phone. That sparked a chain of events: The friend called the girl’s mother; the mother called her son, who knocked on his sister’s bedroom door; and the mother rushed home – and stopped her daughter just as she had begun. Days later, after the girl had been treated at the Indian Health Service Hospital in Whiteriver, the mother started a healing process by welcoming Novalene Goklish into her home.

Goklish is a senior field program coordinator of the Celebrating Life and Empowering Our Spirits programs, which were established at the Center for American Indian Health to track teen suicide attempts and help prevent the loss of young lives on the White Mountain Apache reservation. She leads a team of five people who help connect families and teenagers to counseling services and other assistance that they need.

Soon after the 14-year-old’s cutting episode, Goklish spent time with the girl and understood immediately the seriousness of what had happened.

“It was her intent to die,’’ she said.

TriBE CALLS FOr hELp

The Johns Hopkins program began after the White Mountain Apache Tribe in January 2001 became the first population in the United States to mandate community-wide reporting of suicide completions, attempts and ideation. The reason was obvious: American Indian communities were suffering from the highest rates of youth suicide in the country.

WHITERIVER, Ariz. – The 14-year-old girl carefully drew red magic marker lines on her arms – 20 on each one. These were the lines she would trace with a knife. She was going to cut herself.

But no one had fully documented and understood the depth of the crisis on the Apache reservation until the White Mountain Apache Tribe in partnership with Johns Hopkins began its suicide surveillance program that looked at all forms of self-injury. The program wasn’t just a data collection exercise. Its key component was to deploy trained American Indian paraprofessionals to homes touched by suicide, either from deaths by suicide, attempts, or ideations to make sure they received help.

It became clear that the youth needed help the most. Between 2001 and 2006, the Johns Hopkins study found, 61 percent of Apache suicides occurred among youth younger than 25 years. Those aged 15 to 24 years had the highest annual rates: 128.5 per 100,000, or a staggering 13 times the U.S. all-races rate and six times the American Indian and Alaska Native rate. In addition, the study found that in 2005, 159 of the 235 reported cases of attempted suicide, or 68 percent, were by those under the age of 25; in 2006, 103 of the 160 attempted suicide cases, or 64 percent, were under the age of 25. Females were attempting to kill themselves with the same frequency as males, but males attempts yielded more death, by a five to one ratio. And nearly nine in 10 deaths came from hanging.

A LEAdEr FOr ThE wOrk

The choice of Goklish, 37, as team leader in the program was made with great care. She stands

just five-foot-five inches tall but her presence in a room is unmistakable. At times, she exudes a quiet confidence, surveying all in front of her and making decisions on how to proceed. Other times, inside the Whiteriver Hopkins’ two work trailers, she goes on the offensive by relentlessly teasing her peers. She seems ready to take on anything, or anyone. For a program that is on the frontlines of hurt and trauma on her reservation, in her community, she draws upon the depths of her inner strength to deal with situations that tear families apart.

It wasn’t always this way. Her family, too, was torn apart.

In 2002, her younger sister, then a high school senior, died. The Bureau of Indian Affairs classified it as a suicide, but other authorities were not so sure. Tribal Police, for one, never determined cause of death, and Goklish herself doesn’t believe her sister died by suicide.Still, regardless of cause, the death threw her family into months and years of hurt and confusion.

“I still deal with it on a regular basis,’’ she said one late fall day, seven years after it happened, as she drove north out of Whiteriver. “I really struggled a lot. I went through some depression. I could not let it get control of me. I did a lot of praying. I really focused on my kids. I think it really pulled my family closer together.’’

She is a mother of three children. She is part of an extended Apache family, an Alchesay, a

45ABOVE: Novalene Goklish sits in the Whiteriver, Ariz., home of one of her clients in a suicide prevention program.

46

descendent of the White Mountain Apache chief who during the Apache Wars with the US Army had tried – and ultimately failed – to persuade Geronimo to surrender. In her work, no one has to tell her its importance.

“We touch lives every day,’’ she said. “Our staff go out to houses every day, Monday through Friday, sometimes on weekends. Every morning they go out with smiles on their faces. They work hard.’’

‘i LET OuT my FEELiNgS’

Goklish pulled into the Hon-Dah Resort Casino and Conference Center and walked into the gift shop. Behind the cash register, Tammie Ivins, 35, greeted her warmly. A decade earlier, as part of a separate Hopkins program supporting young mothers, Goklish had counseled Ivins, a high school classmate, who became depressed after giving birth.

“I had nobody to talk to, and Novalene came and was really helpful,’’ Ivins said. “I let out my feelings to her.’’

Twice a week, Goklish had stopped by Ivins’ home, to check on her. “You helped me more than just listening,’’ Ivins said. “You also drove me to doctor’s appointments or to run some errands.’’

As she did with Ivins, she does now in families with teenagers who have tried or talked about committing suicide.

In one neighborhood on the reservation lined with two-bedroom homes, tall pine trees and small, neat front yards, Goklish walked into a home to see the family of the 14-year-old who had drawn the red-marker lines on her arms. The teenage girl was outside; she saw Goklish, waved, and ran off with her friends. Inside, the girl’s mother sat in a recliner and began rattling off the trouble and heartbreak in their lives.Her daughter, she said, had been sexually abused as a child and because of that had severe self-esteem problems and harbored deep anger and anguish. In middle school, the mother said, her daughter had “fallen into a clique of cutters.’’This group, she said, had urged each on to cut themselves to express their despair about the future. One day, the mother discovered in between her daughter’s mattress and box spring a poem she had written called “The Shadows,’’ which ended:

“All I do is cut and cutSo I’m bleeding way moreBecause you left me in Your shadow I guessSo thanks to youI’m too scared to live.’’

ExpOSiNg A NighTmAriSh wOrLd

The mother said that Goklish had helped them by connecting them to counselors and by spending time with her daughter – sometimes in their home, or in school, during breaks in classes.“I had no clue at first that this was happening to

47

my daughter,’’ she said. “Everything was just so foreign. I didn’t know how to grasp it. Novalene was nice enough to explain it to me, to let me know what was happening in the schools.’’

It is a nightmarish world in which young people take any sharp object – knives, razor blades, needles, even the innards of pencil sharpeners – and inflict cuts on all parts of their bodies, from the privacy of their bedrooms, or bathrooms, or in the woods.

Over the next months, the mother would periodically force her daughter to show her arms and legs and between her toes to make sure she wasn’t cutting herself. When her daughter wasn’t home, the mother searched her room for any sharp objects, and on several occasions found them.

After awhile, the mother admitted to feeling so depressed that she also had had thoughts of suicide. She told Goklish about this, too. “So Novalene would just sit and talk with me for long periods,’’ she said.

The girl rushed back into the house, talked to her mother for a moment, smiled at Goklish, and then was off again.

Later, after a quiet ride from the house, Goklish said that home visits often quiet her. But the program’s mission, she said, helped her and other outreach workers stay focused on the task. The hope here is that the work will help pioneer other community-based models to promote mental

health interventions and services in areas that have never had such help before.

Still, this is hard work.

“You are not talking with the same person every day, you are not always hearing the same story. You could be talking to someone about an attempt made by a 10 year old, or it could be by a 70 year old,’’ she said. “All have their own story. You have to filter out these stories by the end of the day.’’

Many stories, though, have positive endings.“You know in many cases, there is hope for them,’’ Goklish said. “Even though this is a huge problem on the reservation, we know we are a making a big difference in someone’s life. We see that every day.’

ABOVE: Novalene Goklish stands next to a stream on the White Mountain Apache reservation.48

whEN ThE STArS COmE OuTNative Vision program aims to inspire the young

Clark Gaines, assistant executive director at the NFL Players Association and one of the founders of Native Vision, has witnessed how the players serve as an inspiration for Native American kids – helping them believe they can succeed and that education is a key to attaining that success. The program, run by the Center for American Indian Health at Johns Hopkins University, started in 1996 with 90 American Indian kids; it has grown into a year-round initiative that features a camp for 700 to 800 kids.

At first, though, said Gaines, 57, a former running back for the New York Jets, some didn’t believe the stars could help. The skeptics included some of the kids themselves.

“I remember one year Derek Kennard from the Dallas Cowboys was speaking to the group and in the middle of his speech, a kid shouted from the audience, ‘Why are you here? Nobody cares

about us. Have you ever been to a reservation before?’ ”

Gaines, on the sidelines, thought to himself, “How does he respond to that?”

BOrN ON AN ‘ASphALT rESErVATiON’

The player had an answer ready, Gaines remembered. “He said, ‘You’re asking me if I have ever been on a reservation? I was born on an asphalt reservation. All the problems, all the issues, that you have here exist in the ghetto. Everybody looks at me like I’m from the wrong side of the tracks. But I chose to break the chain. I chose not to be a pimp or a gangster. If I made that choice, you can make that choice. I challenge you not to fail, because if I can do it, any of you can do it.’”

WASHINGTON, D.C. – The stars come every year now to a reservation – 70 to 80 professional or college football, basketball, soccer, volleyball, and lacrosse players. They are strong, agile, elite athletes. Many are famous. And for three days each summer, they help run the Native Vision program, teaching the values of healthy minds and healthy bodies.

50LEFT: Clark Gaines, assistant executive director at the NFL Players Association.

The audience stood and cheered.

The roots of the program began from an idea from Allison Barlow, associate director of the Johns Hopkins Center for American Indian Health, and Nick Lowery, a former placekicker for the Kansas City Chiefs. Barlow and Lowery were graduates of Dartmouth College, and both were sports stars – Barlow an all-American lacrosse player, Lowery a football kicker. On a plane ride from Hawaii to Los Angeles, as Gaines’ wife stood to walk in the aisle to console their crying baby, Lowery slid into her seat. Five hours later, Gaines and Lowery were still excitedly talking about how they could build a camp. The idea was transformed, and soon a camp was born.

It soon became apparent that the camp’s purpose wasn’t just to expose Native American kids to sports heroes, or just to give them a few days of exercise. It was to inspire them – and to push forward a vision for the future.

‘ThEy NEEd hOpE ANd OppOrTuNiTy’

“You know, the first day at these camps, the kids are standoffish,’’ said Gaines, who has been involved in every Native Vision camp since it started. “But after a day, they loosen up and they begin to get excited. It’s amazing. They need hope and opportunity. We can give them hope. We bring in an athlete and he tells them a story of how he got to where he is.’’

And what about opportunity? That, Gaines said, is a long-term issue, involving, among other things, jobs creation and more investment in education.

At the Native Vision sessions, Gaines also tells his own story to the kids – he grew up in the Civil Rights era in Elberton, Ga., where he was one of 13 African American students to volunteer to integrate Elbert County High School before enrolling in Wake Forest University and earning his bachelor’s degree. He forged a new trail. He had access. And that’s the spirit, the vision, he wants to give to Native American kids.

“At the end of these camps, the kids really get close to the athletes,’’ he said. “They are hugging, talking about issues, exchanging email addresses.”

51ABOVE: Some of the participants at a Native Vision camp throw balls in the air. Photo courtesy of (need credit).

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“ThESE guyS – ANd mySELF AS wELL – wANT TO LEAVE SOmEThiNg BEhiNd. whAT wE ruN iS A LiFE SkiLLS CAmp. ALL ThAT yOu LEArN ThrOugh SpOrTS, yOu AppLy TO LiFE.’’– CLArk gAiNES

rEAChiNg FAThErSEngaging men in raising their children

He stayed home. “I decided that being a parent was the best choice,’’ he said.

Massey, now 32, became a father to Michael, who is 13 and approaching his dad’s 6-foot-3 height. Massey and his wife, Sheree, who both work for Johns Hopkins’ Center for American Indian Health, went on to have three other children – Marcus, 6, Leah, 2, and Lindsey, born Nov. 20, 2009.

On the White Mountain Apache reservation, where single mothers are head of households in an astonishing 39 percent of the homes (more than two times the national average), Massey is a role model for fathers. Now, he and the Center are looking to take proactive steps to help men make choices that will be good for them and their children.

Kirk and Sheree Massey, both family health educators at the Center, spent much of the winter and spring in 2010 interviewing fathers about their hopes, dreams, and challenges. They are taking reams of notes to shape them into a pilot program that the Center plans to launch in the fall.

AN EArLiEr ATTEmpT wiTh FAThErS

It wasn’t the first time that the Center has become involved in a project for fathers on the reservation. In 2004, a project called Family Spirit put together a curriculum for mothers and fathers on better parenting and life skills. But many fathers dropped out for a variety of reasons, including work that took them off the reservation as well as a reluctance to do one-on-one sessions.

WHITERIVER, Ariz. – In the summer following his freshman year at Piedmont Community College in Tucson, Kirk Massey Jr., then 19, could see a career ahead in physical education. Then everything changed. His wife became pregnant. Massey had a choice: Continue his studies in Tucson, or stay in Whiteriver, his hometown, and devote himself to being a father.

RIGHT: Kirk Massey Jr., a family health educator at the Center for American Indian Health.53

The need to get fathers more involved in their families didn’t go away, of course, and, with funding from First Things First, an Arizona initiative to improve the lives of children, and the National Institutes on Drug Abuse (NIDA), Hopkins started a second initiative for fathers.“The dads are kind of getting left out of the picture,’’ said Ranelda Hastings, a family health educator at the Center who was involved in its first program for fathers. “They face a bunch of challenges on the reservation, and this time we needed to find out what kind of help they prefer.’’

In the interviews and focus groups totaling 100 members of the community, the Hopkins researchers found a range of needs, as well as new approaches to teach them parenting skills.Out went the one-on-one lessons.

In came ideas from fathers to hold get-togethers in groups, and to do things outdoors with their children. Massey also came to appreciate that many fathers on the reservation were already playing vital positive roles with their children.

‘mANy hAVE iT TOugh’

“Some fathers who we talked to have been really involved,’’ Kirk Massey said.“Some didn’t have a job, but they didn’t let that disappointment get in the way of parenting. But others have great needs. Many have it tough. A couple of these fathers face challenges in the court system, for instance, and they have to try to overcome that.’’He added, “They all have a desire to do better, be

a better dad, husband, partner, to be successful. But they keep running into barriers.’’

In between interviews with men across the reservation, Massey also sought out tribal leaders and groups that led outdoor activities. One morning he met with Lonnie Shane Burnette, the Tribe’s Director of Tourism. Burnette told Massey about his hopes in renovating an old base camp as an outdoor recreation spot that could offer horseback riding, camping, and fly fishing instruction, among other things.

“It would be really great if we could have some sort of partnership,’’ Massey said.

“It would be,’’ Burnette agreed. “We’ve pitched the idea of using it as a green site. There’s no place in Arizona like this one, where kids could go, and you could teach them how to do things in a traditional way.’’

The two men, roughly the same age, started reminiscing about times when they were boys, and how the camp would be a throwback to that era.

“No cell phone coverage,’’ Massey said.

“No choice but to pay attention,’’ Burnette said, and the two men laughed.

55 TOP: Kirk Massey and his two sons Michael (left) and Marcus (front) at the East Fork Lutheran School in East Fork, Ariz. BOTTOM: Students play during recess at the school.

56

ONE FAThEr’S giFTS TO hiS SON

Massey believes he has had the good fortune to be raised by a father, Kirk Massey Sr., who spent time with him outdoors, gave him a foundation of faith, and strongly pushed for him to have a good education.

“He gave everything to us,’’ Massey said. “He helped teach me what I want to do as a dad, to be there emotionally, spiritually, and physically to help my children.’’

His father isn’t his only teacher. The fathers he interviewed for the project also have profoundly affected him.

“It has changed me,’’ he said. “It’s made me go back and look at my parenting, my fathering style, and to continue to try to get better as a father. At the end of the day, I sit and reflect on what has happened, I count my blessings, go home and hug all my children.’’

Q: Can you describe the beginning of your work with Native American communities?

A: I came out here in 1978, and I had never met a Native American in my life. To the Anglo person, the Native American can represent many things. Some people say, they represent a national treasure. We assume they are close to the land. We talk about them from a spiritual point of view. If you met an elderly Navajo where we are now (outside in Greer, Ariz.), he would say we are sitting in a church, that we are in unity with everything around them – the trees, the water, the rocks, everything.

Q: How have you, as an outsider, established a relationship of trust with people on reservations?

A: I’ve learned so much from them. Our Western culture goes too fast. We tear down sacred things, thinking we can build something better. I’ve seen what they have to offer not just in the tribes, but also to the wider world. If you have lived out here a long time, it’s because you have been touched by these folks somehow.

Q: Why have the partnerships between the tribes and Johns Hopkins lasted so long?

A: The challenge out here is to do your work respectfully. Mathu is a deeply respectful person. With the White Mountain Apache, you

have to earn their trust first. A lot of people come out here, and they are soon gone, or they come looking for something or running away from something.

How you prove you care is by staying the course. Mathu sensed that. He abided by all the rules. People here know they can trust him. The IHS also didn’t see him as someone coming to write another paper. He came out because he saw there was a need to bring equity in health to these people. You cannot turn your back on a situation where children are dying of meningitis on the reservation at 10 times greater rates than children outside the reservations.

Q: What do you see as the bulk of work ahead for Johns Hopkins?

A: For many years, it was all about the infectious disease work. But if you really want to continue to bring any fairness or equity of health care to the tribes, you have to get into different, difficult areas. Now what you see is the assault on a culture, new morbidity. You see the sadness of a culture being pulled apart, with dysfunctional families, child abuse, drugs, alcohol abuse. So now the behavioral health work of the Center is going to be the big thing – the work on suicide prevention, teen mothers, and other issues. Obesity and diabetes could do more harm to Navajos than TB ever did.

‘i hAVE LEArNEd SO muCh’An interview with Dr. Jim Campbell

Dr. Campbell worked for two decades as a doctor with the Indian Health Service (IHS) before retiring in 2006. Since then, he has worked with the Johns Hopkins Center for American Indian Health as a staff doctor on infectious disease projects, as well acting as a liaison with the Indian Health Service.

RIGHT: Dr. Jim Campbell, staff doctor and IHS liaison at the Center for American Indian Health.57

60LEFT: Sky Nez, editor of the Fort Apache Scout Newspaper.

AN iNNEr driVESetting high goals to promote health

Signs appeared early. In 6th grade, he won a school award for creative writing. At age 14, sparked by his interest in music and radio, he started working at the local radio station, and he stuck with it until eventually he was reporting and then broadcasting the news.

After graduating from Northern Arizona University, he became editor of the Fort Apache Scout Newspaper of the White Mountain Apache Tribe – a run that now stretches nearly a decade. And then came the decision to take a big chance, and a big opportunity: He started classes in Baltimore at Johns Hopkins University to earn a public health training certificate in American Indian Health.

On a morning in January 2004, he found himself on campus in Baltimore sitting in his first class in the Anna Baetjer Room; the room was named after a petite wiry woman who enrolled at theSchool of Public Health in 1920, a time when

Hopkins had only a few female researchers, and who then stayed over six decades in a groundbreaking career in which she became known for her devotion to helping others. That day in 2004, Nez began a process that would continue for four years, ending with the achievement of being the first Native American to finish the certificate degree program at Hopkins.

ExCiTEmENT iN BALTimOrE

But he was a bundle of nerves that morning, if incredibly happy. He had decided to start the classes for a variety of reasons. One was because of his personal medical issues; he wanted to gain a better appreciation of health in general in hopes of helping himself. Another was that he had harbored an interest in learning more about how to incorporate public health into journalism, and how that could better serve his tribe.

Sky Nez is a mountain of a man, a stand-out-in-a-crowd White Mountain Apache, but his physical presence is of secondary importance. What is extraordinary about him is something not so easily discerned – an inner drive that seeks out challenges and propels him to surmount obstacles that would stop almost anyone else.

“I was really excited,’’ Nez said. “I just had so much appreciation for being in that room.’’

In that first class, An Interdisciplinary Approach to Understanding the Health of Native American, and in the ones that followed, Nez shared the classroom with Native Americans from a number of tribes, as well as other Hopkins students studying for graduate degrees in public health. The tribal members shared a commonality of being an American Indian, but each came from distinct cultural backgrounds. His circle included a Chippewa from Minnesota, a Sioux from the Black Hills of South Dakota, a Mescalero Apache from New Mexico, and a Navajo from Arizona.

“It was a way to learn from other tribes,’’ he said. “In my own thinking, we were one people, and it was great to be with my brothers and sisters from other parts of the country.’’

pLOwiNg ThrOugh COurSES wiTh purpOSE

He also learned from a series of lecturers – some of the giants in the world of public health, and some of them leaders in Native American health. Each course led to another, one season to the next, and Nez plowed through all, including some courses that were more than a little difficult. He appreciated them the most, especially two: Introduction to Quantitative and Qualitative Research Methods and Introduction to Data Management.

“I liked those two courses because they were the most challenging,’’ he said. “It gave me a great insight into what health researchers do, how they collect information, and how they analyze it. You also had to really use all your mathematical skills – and that’s always a challenge.’’

The courses helped him better understand Johns Hopkins’ mission on the reservations. And it also, he said, “gave me much more insight in how to help the health of our people.’’

The courses also opened new opportunities. In November 2008, he presented information on Johns Hopkins’American Indian Health training program at the National Institutes of Health. And in August 2009, following a course at the Indigenous Health Institute at Columbia University, Nez was chosen by his peers to present a digital story on the health of the homeless at the United Nations Permanent Forum on Indigenous Issues.

He’s not done. He now wants to get his Masters in Public Health. That will create a new series of obstacles, but no one who knows him doubts whether he can do it. They know his drive and his purpose.

“If I can attain my masters in public health,’’ he said, sitting in his newspaper editor office one day early in 2010, just after another long night in putting the paper to bed, “I will use that background and position to help others to promote heath. In the end, I want others to be healthy and happy. So that’s what I’ll set out to do.’’

RIGHT: Outside Tuba City, Ariz.61

dESCENdANT OF wArriOrSAn interview with Rochelle Lacapa

Rochelle Lacapa, a member of the White Mountain Apache Tribe but also of Hopi and Tewa descent, earned her dual Bachelor’s Degree in business and theology at the University of Notre Dame; became a college retention specialist with the White Mountain Apache Tribe, Division of Education Office of Higher Education in Whiteriver, Ariz.; worked as the training coordinator for Johns Hopkins Native American Research Centers for Health; and then became the first White Mountain Apache to receive a Master’s Degree in Public Health from the Johns Hopkins Bloomberg School of Public Health in June 2007. She spoke in early 2010 in Lakeside, Ariz., where she is regional coordinator for First Things First, a statewide organization that seeks to improve the lives of children up to age five.

64LEFT: Rochelle Lacapa, regional coordinator for First Things First.

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Q: How can you help?

A: I think I can be seen as a resource in terms of knowing how to work the channels and knowing how to get information. Secondly, I can be seen as an example that you can go across the country and come home. Is it easy? No. But you can do it. I’m an example of a girl who grew up in the White Mountains who went away for undergraduate and graduate school and came back – and is trying to make a difference.

Q: Why did you come back?

A: A couple of reasons. My family is here, and after living in the Midwest and on the East Coast, I just realized that I wanted to live here. I wanted to start a family and raise a family in Arizona. But I also feel like I have a lot to give in terms of helping my community in any way that I can. Whether it’s being the go-between in terms of talking about medical research, or even being an example of an Apache girl who went to college and came back.

At the end of the day, no matter where I go in the country or in the world, I will always be White Mountain Apache. And so I guess I will always have a sense that this is home and these are my people, and whatever I need to do, I will do it to help my people.

Q: What was challenging about it?

A: It was sink or swim. While working on my final research project, my desk was next to one of the Center’s Infectious Disease researchers, Gene (Eugene) Millar. I was constantly asking him, `Gene, how do I … ? Gene, do you know what this word is? Gene, how can I …?’ He’d have to sit down and draw pictures and help explain things to me. But I think that’s another element of being successful, and that’s something students struggle with – just being able to ask for help. We’ve been taught from a very young age to not ask a lot of questions because it can be seen as a sign of disrespect. However, in academic settings, not asking questions can often lead to a student’s downfall.

Q: How do more Native Americans follow your path?

A: A level of fearlessness needs to be reclaimed by the Apache people. Historically, we have always said that we’re a proud and fearless people and that we’re descendants of warriors. Somewhere along the way we’ve become very fearful of anything and everything. I think in order to really be successful and to really go after what you want – whether it’s on the reservation or not – there has to be that element of I’m giving 100 percent to this, whether I succeed or fail.

Q: Why did you enroll in the Johns Hopkins master’s program in public health?

A: After completing my undergrad I had always thought I would go into corporate America and thought the higher education job with the Tribe was just a stopping-over point. When the Johns Hopkins’ position became available and I ended up taking it, I really started to see there is a much bigger need in terms of public health and started to get a much wider view of what public health is and how public health shapes everything we do in every community. If all facets of our public health system aren’t shored up, there are a lot of negative consequences.

After two years of being at the Center, Mathuram (Santosham, founding director of the Center for American Indian Health) encouraged me to apply to the School of Public Health. I really loved and hated the experience – hated it only because it was so intense. The masters program in public health at Johns Hopkins is 11 months and 80 credits worth of classes. It was such an amazing experience in terms of being able to learn from other public health professionals throughout the world as well as learning from some of the best public health minds in the country. They gave me a really broad perspective on what public health is.

“A LEVEL OF FEArLESSNESS NEEdS TO BE rECLAimEd By ThE ApAChE pEOpLE.”– rOChELLE LACApA

BLESSiNgS OF A mEdiCiNE mANBlending spirituality and healing

“I picked it up,’’ he remembered. “After walking about a mile, I threw it away. A day or two after, I was running in the early dawn with my brothers. It was pitch dark. I saw a horse running our way. As it was getting closer, I didn’t hear the pounding of the horse hoofs. I panicked. I yelled. I cried. I ran away from it. I don’t remember much after that. I was brought before one of my grandfathers and I told him what I did.”

“He scolded me, he was mad at me. He told me it came from a man who lived there, who died there. It was a taboo. The family took his favorite horse and put a bullet through its head, and killed the horse. That’s how they do it in the old Traditional Navajo way. You kill a horse for a journey into the spiritual world. My grandfather said you messed with that spirit by picking up the bridle, that’s why the horse came back to you.“After that, my dad kept me close. He said I had

been touched by the spirit and he viewed it as a symptom of becoming a future Healer.”

The young boy had no idea what was in store for him, to become a Medicine Man.

drAwiNg upON ANCiENT LESSONS

Now, 46 years later, he is that and more. On weekends, he often performs traditional all-night spiritual ceremonies for others in his tribe, drawing upon a storehouse of knowledge from his father and grandfather, including 400 songs that they taught over years of nights of singing. And during his healing ceremonies, their words pass through him, and he asks the person in need to repeat those same prayers. “When I pray, it’s like 1000 words of wisdom are flowing through my mouth,’’ he said.

TUBA CITY, Ariz. – When Thomas Hatathli was no more than six years old, he was herding sheep one day and came across an abandoned hogan – a traditional Navajo home. In the grass, he found an old horse’s bridle.

RIGHT: Thomas Hatathli mental health specialist with the Indian Health Service at Tuba City Hospital. 67

During the work week, he is a mental health specialist with the Indian Health Service at the Tuba City Hospital. And whenever possible during the year, he works with the Johns Hopkins Center for American Indian Health. For several years, he has taught courses on Native American spiritual ways and traditions at Johns Hopkins’ Baltimore campus. In Arizona, he has frequently given advice to Hopkins leaders on a variety of issues. He also has blessed the openings of several projects. He had participated as a running coach in the Center’s Native Vision camps.

“We value him so much,’’ said Kristen Speakman, training manager for the Center. “We look to him as someone who provides wisdom for our work. He provides a balance. When his hand is on a project, it puts us in a good way.’’

BridgiNg CuLTurES

For Hatathli, 52, a competitive marathon runner who coaches and runs alongside high school athletes in Tuba City, the blending of the traditional ways of the Navajo and the ways of an established Eastern U.S. academic institution have come fairly easily. He sees value in both approaches on the reservation. He sees each working toward the same goals – better health for all Native Americans.

“I really appreciate that they are trying to incorporate spirituality into their healing system,’’ he said. “… I feel comfortable with them.’’

The soft-spoken Hatathli has helped the Johns Hopkins researchers to connect to the Navajo culture in ways they never could on their own. This relationship, an informal one without titles or set responsibilities, has built bridges for each.“I come from a family of Medicine Men, and I always feel we live in the companionship of our childhood days,’’ he said. “For us, to be educated, to go out from your own land into the outside world, is not an easy accomplishment. Many people need help. So I appreciate that Johns Hopkins is here and reaching out to many people who are in great need.’’

A scene south of Whiteriver, Ariz.69

“wE LOOk TO him AS SOmEONE whO prOVidES wiSdOm FOr Our wOrk.’’– ThOmAS hATAThLi

JOhNS hOpkiNS BLOOmBErg SChOOL OF puBLiC hEALTh

CENTEr FOr AmEriCAN iNdiAN hEALTh

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