Kate Whetten-Goldstein came to know the Zairian people as a Peace Corps volunteer working with AIDS patients in the late 1980s
More than anything else in Za- ire, Kate Whetten-Goldstein despised the broken-down hy- droelectric plant. Designed and built by Western governments to provide electric power to Za- irian villages, the Inga Hydro Facility worked just three years before malfunctioning, serving thereafter as a daily reminder of the country's deprivation. "Worse than not having elec- tricity is to give it to someone for three years and then take it away," says the assistant pro- fessor of health policy, who came to know the Zairian peo- ple as a Peace Corps volunteer in the late 1980s.
While in Africa, she worked with midwives to increase their trust of hospitals. By teaching village health workers the im- portance of vaccinations, she was able to persuade the major- ity of parents to have their chil- dren vaccinated, stopping a measles epidemic that was kill- ing 120 children a year. But the recurring failure of policy- makers to help on the local level showed her a future in the field of public health. "My rea- son for going back to school was to translate health needs on a local level to research lan- guage and policy language. I felt there was a need for a translator."
As a faculty member of the Center for Health Policy, Law, and Management in the San- ford Institute of Public Policy, Whetten-Goldstein studies the issues surrounding access to health care and the effects of chronic diseases on individuals and society. Since her arrival at Duke in 1993, she has led stud- ies on health issues as diverse as Parkinson's and drunk driv- ing. Her most recent work has focused on HIV-positive indi- viduals, with two major HIV/ AIDS studies currently under way.
Though she shares space in the not simply because you're cutting care," she says. It has become the underlying prin- ciple informing most of her research.
"Kate wants to get good care to the people, who are up against enormous barriers," says Alison Heald of Duke's Infectious Disease Clinic, who has worked with Whet- ten-Goldstein on the HIV/ AIDS studies. In her six years at Duke, Whetten- Goldstein has worked to measure the real costs of Parkinson's to families (one conclusion: the costs must include the contributions of the spousal caregiver) and has measured the public's perception of multiple scle- rosis with the experience of MS patients themselves (people with MS would be willing to pay more to avoid the disease and less to get rid of it than those without MS). She has surveyed hospital pharmacies to determine if managed care was causing changes in processing (it wasn't) and studied the atti- tudes of barkeepers on the issue of drunk driving, con- cluding that the perceived threat of a civil lawsuit from victims is much more effec- tive at creating responsible practices than other drink- ing-related policies and regu- lations. A book on that sub- ject, co-authored with Frank Sloan, director of the Center for Health Policy, Law, and Management, is being pub- lished by the University of Chicago Press this year. Sanford Institute, it's from her office in the Old Chemistry building that she communi- cates with her research and demonstration team, which is scattered from Greenville to Fayetteville, from University Tower to rooms just down the hall. It also places her a bit nearer Duke Medical Center's community and family medi- cine department, where she was named an assistant profes- sor last December.
Because Duke lacks a school of public health, Whetten- Goldstein must spend part of her time simply explaining to others what she does. It isn't simple. She is part epidemiolo- gist, in that she uses epidemi- ologic techniques in her health- services research. However, because treating an individual's physical illness may require looking at an entire life situa- tion-perhaps uncovering com- peting problems such as addic- tion or mental illness-she's part social worker, too. "I'm always asking utilization-of-services, quality-of-life type questions," she says. Compared to clinical work, health-services research "is much more indirect, but you can have a tremendous im- pact on a greater number of people if your findings are generalizable."
She likes to remind people that a sixth of the nation's budget goes toward health care, but she is adamant about how the issue of cost savings should intersect with community health. "Savings should occur because people are healthier, To Sloan, who brought Whetten- Goldstein to Duke in 1993, one of his prot?g?e's biggest accom- plishments has been to build "tremendous bridges" between the university and the medical center. He also points to fifty collaborations she has had with entities outside the center. She, meanwhile, credits Sloan for giv- ing her room to stretch herself. "From the beginning, I was able to take on my own work and get my own funding," she says. "Traditionally, that has not been the norm at Duke."
Looking at her early life in up- state New York, one might have guessed she would be blazing her own trail. Her father was a General Electric physicist who pioneered CAT-scan technology. Though she didn't inherit her fa- ther's love for mechanical tinker- ing, she did inherit his work ethic, routinely putting in twelve-hour days at the office. "Watching him, I learned work isn't something you do eight to five. It's something you live and bring home, but not in a bad way." Her mother was dedicated to civil-rights issues, routinely hosting such activists as the Freedom Singers at the family's home just north of Schenectady. Whetten-Goldstein's interest in public health goes back to a high-school year spent abroad in S?o Paulo, Brazil. During her college years, six months in Bei- jing proved once and for all she had the stuff for foreign living; after graduating as an Asian-studies major from Bates College in Maine, she applied to the Peace Corps-something she had wanted to do since the sev- enth grade.
She arrived in Zaire, Africa, in 1986. Though it had been a full fifty years since the Bel- gian government had pulled out of the region, gaining the villagers' trust was still a tough job for a Westerner. It took Whetten-Goldstein more than a year to build bonds with Za- irian midwives, who under the Belgian regime were routinely fined and jailed for steering their clients away from state hospitals. After a year, the midwives finally accepted the young American's instruction- how to know when a preg- nancy required a hospital visit, for instance-as well as her stethoscopes.
Her Peace Corps assignment was the village of Masisi, 120 miles northwest of Goma, which during the Rwandan civil war of the early 1990s would become the much- publicized refugee camp for those fleeing the fighting. She traveled by motorcycle be- tween villages. The land was lush, she says, the people and culture fascinating. Whetten-Goldstein spent four years in Zaire. When she left in 1990, she invited all her friends to a going-away party. Not only Nandes and Hundies showed up, but Tutsis and Hutus as well. "Someone said this was the first time all those ethnicities had been in the same room. People danced to- gether and mingled together. It was the biggest party the town had seen."
Upon her return to the States, she enrolled in the School of Public Health at the University of North Carolina at Chapel Hill. Her course of study in maternal and child health and health policy allowed her to learn such essential quantita- tive skills as econometrics and demography, as well as epide- miology. Her dissertation study looked at structures of health care in rural North Carolina and how they com- pared to those in less industri- alized nations.
During an internship at the Pe- diatric Infectious Disease clinic at Duke, Whetten- Goldstein interviewed mothers about the care their children were receiving. But she went a step further by inquiring about their lives. It was her early be- lief that the health-care profes- sion must consider a person's whole life in order to deliver effective care. "If you want someone to do well, you need to understand more than the signs and symptoms of the dis- ease," she explains. For exam- ple, while later studying Park- inson's patients, she learned that doctor and patient often had different priorities: Where doctors often focused on a pa- tient's trouble walking, the pa- tients might be more con- cerned about involuntary drooling. "You have to ask the patient, 'What do you want to take care of?' " Sometimes, she says, such questions will lead to a cost benefit as well, since patients become more likely to engage in therapy and in keep- ing scheduled appointments. As principal investigator for two AIDS studies, Whetten- Goldstein works closely with case managers, who tend to know patients' lives more inti- mately than clinic workers. One demonstration and evalua- tion project, the North Carolina SPNS (Special Project of National Significance) Integration Pro- ject, has established computer links for forty case- management agencies in the state. The closed network al- lows the case managers to communicate on-line with in- fectious disease clinics at Duke, UNC-Chapel Hill, and East Carolina University, as well as individual county clin- ics, to discover what services their clients are eligible for. The system has Internet chat rooms where the managers can meet to solve problems. The five-year study, which con- cludes next year, is funded by the Health Resources and Ser- vices Administration (HRSA), with pharmaceutical compa- nies paying for computers. Understanding the daily lives of HIV patients is imperative, Whetten-Goldstein argues. Pa- tients who don't take their medications correctly may un- wittingly create drug-resistant strains of the virus. "I don't know of any other example where a clinician must weigh treatment against the health of the public," she says. Directly observed therapy (DOT), in which a patient takes medicine in the presence of a clinician, was the solution for the more recent tuberculosis upsurge, but HIV drug regimens are too complicated for daily monitor- ing.
Furthermore, myths and mis- conceptions plague the HIV- positive population, which may be battling substance abuse and mental illness in ad- dition to the disease. A pa- tient's dysfunction can frustrate physicians to the point that pa- tient and doctor are alienated. "I've heard physicians com- plain, 'I care more about my patients than my patients care about their lives.' Some providers are an- gry and burned out, some are even hostile toward patients." While doctors' frustrations are understandable, Whetten- Goldstein's research in this area has also suggested a gen- der bias: Women are less likely than men to receive the triple-drug therapy. To help everyone understand better what the patients go through, as part of the SPNS project, Whetten-Goldstein's research team spent the sum- mer of 1998 doing in-depth interviews of twenty-five HIV- infected individuals in the east- ern part of the state. Represent- ing the "second wave" of the epidemic in the U.S. -the uneducated and impoverished, as opposed to the educated gay community-the subjects tell stories that are staggering in their rawness. Seventeen of the interviewees experienced se- vere trauma in childhood, whether incest, rape, or a wit- nessed killing. On average, each adult had experienced seven major traumatic events over his or her lifetime. One staggering finding: Each per- son who had been raped as a child was raped later as an adult.
"We know how trauma relates to self-esteem and self- efficacy, and need to better un- derstand if and how it affects the ability to negotiate sys- tems," she says. "Where a per- son is in the continuum of their life determines how they are going to react to HIV. We haven't moved forward be- cause we haven't dealt with this past stuff." She is working with her project coordinator, Trang Nguyen '98, to put the interviews in a book form. In an effort to help HIV/AIDS patients who have mental health as well as addiction problems, in May 1998 Whet- ten-Goldstein applied for and received a $4-million federal grant for "a triply-diagnosed" study that links patients in fif- teen eastern North Carolina counties with the Duke Addic- tions Program, and also in- volves the Fayetteville and Cumberland County mental health centers. That five-year study concludes in 2003. Meanwhile, she is drawing up a new NIH proposal called "Coping with HIV as a Chronic Disease in the Rural South." The study would look at 1,000 infected individuals over five years and "would bring together everything I've learned up till now. That's ex- citing." The challenge for pub- lic-health researchers may only increase if drug-resistant strains of HIV develop and mortality rates climb. Whetten-Goldstein sees a heightening of the debate on whether to adopt mandatory testing, an issue on which she still wavers. "If it didn't ruin people's lives for others to find out they were HIV-positive, and if the population was more sensitive to the disease, I would think everyone should be tested," she says. There are efforts to increase the number of tested individuals: Some emergency rooms authorize their workers to offer AIDS tests, and women are respond- ing to public-service ads that stress an AIDS test as protec- tion for their families. While expressing strong hopes that a vaccine will be devel- oped, she is gratified by the way some people show others how to cope with the disease. In a strange irony, the disease gives some patients the impe- tus to get off drugs and out of abusive relationships. One of the chapters of her case-study book will be called "Love after HIV." "We've talked about sex after HIV, but so often we don't talk about love. HIV, for a large number of people, is the first time they have cen- tered their lives." As she works to help under- stand the disease in the south- ern United States, she can't ig- nore how AIDS has ravaged the continent she left behind. Eighty-five percent of all AIDS deaths last year were in Africa, according to a recent Newsweek cover story on the subject. In Botswana and Zim- babwe, a full quarter of the population is infected with HIV. "When I think about Af- rica, I just feel despair," she says. "The problem is tremen- dous and overwhelming." In her view, there will be no sat- isfying solution for Africa until there's a vaccine.
Despite such feelings of dis- couragement, Whetten- Goldstein remains a strong ad- vocate for health-work abroad. "One of the big things I talk about in class is that going abroad is like going back in time in the United States. It's not like being a doctor, where you meet the person that you helped, but you are able to look at the numbers and say, 'We saved 200 lives.'" The pro- fessor enjoys using her intro- ductory class as a way to intro- duce the field of public health to a population of undergradu- ates who are largely pre-med. "I had one student ask me, 'When did you decide you never wanted to be an M.D.?'" The question, she says, showed her just how strong the pres- sure is for children of physi- cians to follow their parents into the clinical field. When some decide they really don't want to become doctors, "it's such a crisis for the students. I think some of the parents must hate me because I'm supportive of other options."
Nguyen, the project coordina- tor for all of Whetten- Goldstein's ongoing studies, smiles when asked about her boss' so-called subversion of the undergraduate pre-med culture. "She's helped a lot of students see that public health is a great field and where they need to be," says Nguyen, who believes her own extensive work with Whetten-Goldstein will make getting into public-health school no trouble at all. Julian Harris '00, a recently- named Rhodes Scholar who c o m p l e t e d W h e t t e n - Goldstein's "Health Policy: Prevention and Management," is also complimentary: "Kate's ability to convey her passion for 'the fight' to her students makes us want to work harder for her, for ourselves, and for the people that we will one day serve." Harris has conducted qualitative research on clinical ethics in Guatemala and Tan- zania, and this summer will be working on international ethics guidelines for collaborative biomedical research at the Na- tional Institutes of Health. Whetten-Goldstein says she hopes the health community is catching on to the ideas behind her work. While she does not think it would make sense for Duke to go in the direction of a public-health school or insti- tute, she does believe in a strengthened role for the Cen- ter for Health Policy, Law, and Management within the San- ford Institute of Public Policy, perhaps in collaboration with other parts of the university, including the law and business schools. "I'm a researcher who runs demonstration projects," she says, comparing her role to that of other professors. "The outcome I'm after is to find models for care.
"We influence through papers, not books, but we really do the same thing. Duke has great potential in the area of health policy, and public policy has pushed me in directions I might not go otherwise." Larson '93 is a freelance writer living in Durham.
