Background: This discussion between Reverend Karpf and Katherine Marshall took place in Washington, D.C., soon after Ted Karpf retired from seven years at the World Health Organization in Geneva. The interview focuses on his extraordinary life journey, exploring his understanding of the church and his pastoral role. He describes his central role in the earliest understandings of the implications of the HIV/AIDS pandemic, and how that led to his work on national and international public health challenges. He draws many lessons from his experience, including the importance of mentoring young people and the need for a concept of Decent Care within health systems.
Your journey has been an extraordinary one. How did it start?
The very beginning? My roots are in the East Coast, but my adolescent years were spent in Texas. My mother came from Boston, from a Catholic-Protestant marriage, and my father from New York, from a Jewish-Christian marriage. And in many ways, therein lies my tale!
There were two important mainstays in my youth: two grandparents. Two of my four grandparents were immigrants: from Ireland, on my mother’s side, and German-Jewish on my father’s. The two other grandparents were classic American from other eras, Puritan on my mother’s side, Dutch on my father’s. And all those strains run through me. I acknowledged that early in my life and have built on these different, sometimes contradictory strains.
No one in my immediate family was religious, so I had to find my own way to religion. Essentially, I could go to church as long as I could walk there, so I did. At the age of 11, I was confirmed as a Methodist, mainly because there was a Methodist church that I could walk to. But even then I longed to go to the Episcopal church, but it was four miles away and no one would take me there. Religion was an important fixture in my life from early on.
Why was that? What sparked your interest?
It really was sparked by two important, imposing figures on either side of my family.
One person who had a heavy influence was my great aunt, who was an immigrant Irish nun, a Sister of Charity. She saw it as her mission to convert her heathen nephews and nieces. We would go to see her at her convent, and she would take us, gravely and with great care, to the sacristy in the convent. “Do you want to see Jesus?” She would ask. Then she would solemnly take the key out of the sash in her robes, go to the tabernacle box, and open it slowly. “Do you really want to see Jesus?” “Yes,” we would answer. She would reach in, and pull out the host. By now I was convinced that Jesus must be tiny, a kind of Tom Thumb. She would carefully pull out her hand, then, before we saw anything, thrust the door closed.” You can’t see it,” she said, “because you are not Catholic.” And that was that.
My grandfather was a practicing Jew, but my father never knew that, because my grandfather never spoke about it. He would simply disappear every Saturday morning (to Sabbath services at the synagogue). When my grandfather died, his son did not know that whole part of his life. But he would take me with him to the synagogue, and no one in the family knew. I came away with deep remembrances that I never spoke of and seemed to forget, memories of the big man holding me and whispering prayers. Then, during the Yom Kippur War (1972), it came back in a strange way. I was at a synagogue in Brooklyn where I knew the rabbi, and found myself speaking Hebrew, reciting the psalms and davening (praying). “How do you know that?” my rabbi friend asked. “I don’t know,” I answered. And then I started on the rediscovery of my grandfather’s life, and learned what had happened at his funeral and other hidden parts of his life. The memory of that big, imposing figure has never vanished.
Going to church was part of my rather temperamental makeup and personality. And over time, the notion that I might join the ministry and priesthood began to grow.
We moved to Texas in the early 1960s. In school, I discovered an aptitude for journalism and during my years in junior and senior high school, I expected to be a journalist. I won a scholarship to a college in Fort Worth, Texas Wesleyan University. That was a heady time, with Martin Luther King Jr. active and the Vietnam War going on. In the summer of 1968, after Dr. King was assassinated, I was in Alabama, working as a journalist on a daily paper, the Decatur Daily, covering—if you can believe it—George Wallace. My draft number was drawn with Vietnam in prospect, and I realized that I was truly a conscientious objector. I began to reflect on my future, and realized that, as a journalist, I would always be an observer, but as a minister, I would be a participant. Otherwise the work was much the same: reporting, except I would be reporting on God.
So I went back to Texas and completed my undergraduate studies, in journalism, as planned, but I squeezed into my senior year a complete four year course in theology. I graduated as president of my class, with honors, just exactly at the time of the Kent State shootings. At the time, I was still a Methodist. I was offered scholarships to several places (in theology): Duke, Union Theological Seminary, SMU, and others. But I decided to go to Boston University, because it was the school of the prophets: Martin Luther King had been there not long before, studying with ethicist Walter Muelder and philosopher Peter Bertocci.
What was your focus during your graduate studies?
The four years I spent studying in Boston were a wonderful experience that changed me forever, learning from great teachers and preachers, and also finding my way to different religious communities. I was deeply marked by a year that I took off to travel the world, as well as by the academic and religious life in Boston.
As a Methodist student, I heard the great Theodore Parker Ferris preach at Trinity Church, Copley Square; he was in the last year of his ministry. I attended both Methodist and Episcopal churches, and no one said anything at all about it or saw it in any way as a contradiction. I also attended church at the Emmanuel Church, behind the Ritz Carlton; I would listen to Bach cantatas. Yet in 1971 I was ordained as a deacon in the Methodist church.
But I was also clearly changing in my religious identity. I studied with Krister Stendahl, Harvey Cox and H. Richard Niebuhr, and a number of other greats, and those who were the sons and daughters of the greats, especially Tillich, and I used every bit of what I learned. Clearly I was moving away from my Methodist roots in my religious identification.
Who were your mentors during this period and what did you take from the experience?
I was blessed by having a wonderful Dr. George Litch Knight, pastor of Lafayette Avenue Presbyterian Church in Brooklyn, who supported me on that venture with a large grant. One of my more important learnings from that period was the importance of mentors and mentorship. Since then, I have mentored a half dozen people, over many years, with money and support, urging and insisting them constantly to do something they have not done before. The initial grant to me was repaid six times over. Each generation has a responsibility to help raise up the next.
What about your year traveling the world?
The year traveling from place to place gave me a remarkable opportunity to taste the world! Initially, I took off headed for Bangladesh, which was then a new creation. But when I arrived there I found I was not really needed. So I spent most of my time in the Middle East (especially in Egypt), and in Geneva.
In Geneva, I worked with Eugene Carson Blake (then General Secretary of the World Council of Churches, WCC) and became much involved with the WCC. It was a dynamic time and left me forever tainted by the spirit of Ecumenism. The Christian Medical Commission was active then. I heard Paolo Freire speak (he was at the WCC), and also had contact with SODEPAX (the joint commission between Catholics and Protestants on Society, Development and Peace) which was the bridge between the Catholic Church and the WCC at the time. Leopoldo Nilus, the great economist, urged me to study Marxism! I think back and wonder at the amalgam of people that can touch our lives. I was then very ready to be touched, and I took on a lot of stuff that has since carried me, seemingly inevitably, into many situations. I treasure especially that time at the WCC, with its bold vision of a very different world. After that time of ecumenism, I have been unable to fathom a world of separatism. And when I see today how Rome is, with its reactivity, I ask, “What is this all about?” In the 1960s, we and the Catholic Church also were in the thrall of a post John XXIII world. There was a wonderful energy, at WCC and at the St. Pierre Cathedral in Geneva, where Martin Niemoller and W.A. Visser Toft were (they were also at the WCC). They seemed ancient to me then, and they were wise. They had survived World War II and its chaotic aftermath, and were prophetic in their vision and their self understanding. I realize now that they were then actually the same age that I am now, at their prime! There was a sense of still climbing out of the doldrums of post World War II Europe. And many peace initiatives were going on, including the negotiations of the third successive peace agreement for Sudan (it is easy to forget how long that war has gone on).
And then what?
After that remarkable year, I returned to Boston University to complete my degree, I seemed to have changed and became very serious about ministry. I had tasted the world, and knew now that there would be a lot of challenges ahead.
After I graduated, I decided not to return immediately to Texas, but took another year “off,” this time in England. I worked from a Methodist church in Bath and taught in the church school. I made some 10,000 house calls in that year. I remember well the flats in the rolling hills leading into the city of Bath. At that time, some 50 percent of the people said they were Church of England, but it was rare if 50 attended church on a Sunday. The situation of the Methodists was not much better. I met the woman I would marry, the mother of our children, and made fabulous friends, people I am still close today.
And my Anglican roots really date from that period. I was influenced by Dr. Albert Outler, professor of Church History, particularly Methodism, at Southern Methodist University in Dallas. I visited with him (he was working in England), and learned much from his work on the Wesley journals. I realized from his works that the Methodism I had known in the U.S. bore little or no resemblance to Wesley’s church and ideas. I came to understand the origins of Wesley’s church in the eighteenth century as societies and social support groups. He had grasped the social gospel in a wonderful way, and understood that you could not have a deep relationship with God without a deep personal relationship with society. I came to see Wesley as a reformist Anglican, and realized that Wesley in fact died an Anglican. I came to understand how the Methodism in England was what later gave rise to Marxism, to the middle class and the notion of the middle class, and that fired industry and the industrial revolution. It was that spirit that resonated for me. In addition, Methodism taught me to preach: I was treated as a coequal in the church and found myself preaching three times every Sunday.
But the Methodist church as an institution had come to focus far more on practice, and I came to realize that that was not something I wanted. My real discontent with Methodism (as I knew it in the United States) became manifest during this period. It was possible to be an Anglican in very different societies. It involved a nice blend of many elements and that resonated for me.
So you finished your studies. What then?
I came back to the United States, Kaye and I were married, and I was assigned to a rural set of churches in central Texas, along the Red River. I was responsible for five churches, spread over 40 miles. And I did all five of them, much as I had in England. I had to learn the practice of pastoral care, and it was hard. We lived in a little village; its sign that said population 300 was changed to 302 after we moved in. It was a community that was close to the earth; I buried, and married, and spent a year learning how to preach and how to work with people as their pastor.
I also was the chaplain for the University of North Texas, which was one of the early twentieth century “cow colleges,” whose purpose was described by a professor as “to take an uneducated group of people and equip them to live in an urban setting”. It is situated right at the top of the Dallas/Fort Worth golden triangle. At the time it had 18,000 students, which was large at the time. Today it has 40,000 students on the same campus. As a basis of comparison, the University of Texas then had 30,000 students. We were in many ways witnessing and working with the urbanization of Texas. There was an ecumenical forum there. For me, it was leading Chapel on Sundays, and attending an Episcopal mass on Wednesdays.
It was during the 1980s that I started the process to become an Episcopalian. In 1982, I stepped down from the Methodist Church, my daughter was born, and 110 days later I became an Episcopal priest. Two and half years later I started over again to become a parish priest. In 1984 I was called to be the rector of the Church of St. Thomas the Apostle in Dallas. My daughter was 2 and my wife had finished her degree in medical technology.
There was a dark spot on the third Saturday of June 1981 that I remember well. My wife was finishing her degree and working in a blood bank. On that gorgeous summer morning we were sitting having coffee on the balcony and read what we know now was the first clinical description of the HIV virus, from the CDC Morbidity Mortality Weekly Report. I remarked that the report description sounded like three deaths of gay men I had witnessed in the parish recently. They had died quickly from immune suppression. At the time there was no apparent reason why and it was very much a mystery. Kaye went on to say that she had read fragments in journals and was convinced that it was a virus causing it and that it was a blood borne pathogen. Both proved to be true several years later. We asked ourselves whether we thought we would see this on any significant scale and concluded that it was an anomaly and that we probably would not. How wrong we were.
1984, I went to Dallas, Texas and my challenge there was essentially to revive a dead congregation. When I came, it had 27 real members; over 300 were listed as members, but I could find them nowhere. Adjacent to Dallas’ up and coming gay community, and a historic middle class Black community and literally across the street from the exceedingly wealthy Highland Park section of Dallas, the church had and still has unique opportunities for mission. And it came to life and grew.
Then one day a young man came to me with the terrible purple and brown lesions of Kaposi’s Sarcoma, a cancer. He was a young man of 34 from Atlanta, Georgia, who looked as if he was in his 90s. He asked a question that changed my life: “May I die in your church?” I answered that he certainly could (not taking his question as his real concern) but urged him to come to church on Sunday. What I did not know then, and would not know for nine months, was that he was deadly serious and was in fact planning his suicide in the church. I had disarmed him by inviting him to become part of community. From that small start we began to create an AIDS service and support group, which would become the model for the Dallas AIDS Interfaith Network, which I started some years later. That and similar efforts in the gay community specifically and across other communities changed the world, and we were part of it.
Ours was a fast-growing and diverse congregation, and, like all congregations, the objective had been to build it into a homogenous community, because that makes life easier and reduces hassles that go with diversity. I pressed a different path. We were at a place of crossroads of many communities. We had to recognize the skepticism about religion in the late twentieth century that was so evident. We were buffeted in Dallas by a vast financial meltdown, as financial institutions were in effect cannibalizing historic banks and communities. In many ways the community was imploding. Over and above this, the HIV/AIDS pandemic was emerging and gay people were dying before our eyes. But it was not just a gay thing (though many would claim it was): women too were dying, as were people of color.
Were you in an epicenter of the HIV/AIDS pandemic as it became apparent?
Yes. Slowly people began to be aware of what was happening, with Time and Newsweek, in cover stories, calling AIDS the “new plague
The story of the young man dying of AIDS spread in my community. People began to insist that he must stay at home in order to prevent the spread of disease. People were irrationally fearful, frightened out of their minds. This led them to send different, often contradictory messages. In April, my son David was born. As part of my effort to respond to the fears of the congregation, during communion my family, the four of us, were at the altar and were the last ones to consume the wine in the cup—to drink from the cup rather than dipping the bread into the cup (intinction) which had been banned in Dallas for ages, because of the associations with racism and the refusal of whites to drink after people of color. People watched, week after week, commenting that “he wouldn’t do this and risk killing his family if it weren’t safe to drink.” Shortly after Jerome’s death, 25 years ago this week, word got out and others living with HIV/AIDS started coming to the church. Even so, people began transferring out: 178 people in five weeks. The issue was all about HIV/AIDS.
Every pastor’s nightmare happened: I held a service and no one came. At the appointed time for the weekly high mass on Sunday, there were three people and they were there because they had parts in the service. The several dozen gay men in the congregation even stayed home, fearful of discrimination. There was an organized effort to stop what was going on, to confront me. To cap it, I had not been paid since July, and there was no money to run the church. Yet we were able to keep the lights on, and kept offering mass, ringing the bells. I took comfort then in the scripture passage that said “whenever two or three are gathered in my name, God is present.” The day when no one showed up, I continued with the service, and just towards the end a dozen people filed in. I resolved that from that day forward the doors could never be closed. Tragically, the person about whom this act of keeping the doors open had originated was too sick to be there; he never entered the church on his feet again.
What we learned from the experience was the full extent of the social need in the community. We also realized that no one expected churches to stand for anything. And the experience escalated me into the social services arena around the city of Dallas. We had meetings with country commissioners and politicians. AIDS was a political issue from the beginning. But what I saw clearly was that people needed to be accompanied in their journey. It is/was about being with them, alongside so that no one faced this alone.
Then there was an effort to force me out of that church. The Bishop asked me to resign and I refused. What I did not know then was that there was a standing offer on the property to build a strip mall where the church was, essentially a plan that would have obliterated an historic neighborhood of the black community. Because we held firm, none of that happened and the black community there is still intact. It was a feat to be in the social crosscurrent.
Over the next two years, 150 people would die of AIDS in that community. People with AIDS came from everywhere because we would turn no one away. The famous journalist and pundit, the late Molly Ivins, was a member of the community. The Presiding Bishop, Edmund Browning, commented that ours was what the church should be, but he would hate to be the rector there!
There was a very dark side to that period. I would wake up in the darkest hours of night without even a call, go to the hospital and give last rites to someone, then go home and back to bed. I was so tuned in to what was happening that I could feel changes in people by instinct. The care-giving that was needed was immense. It was on a scale that I would later know in the African pandemic.
Where did this experience take you next?
It led to a sharp change of focus and career. The City of Dallas responded to a Robert Wood Johnson Foundation proposal to move from improvisation to a more systematic program in response to the HIV/AIDS pandemic. And in that context Dr. Charles Everett Koop, who was then Surgeon General under Reagan, invited me in 1988 to join public health service, and I accepted.
I did this partly because of tumult in my life. My wife and I had separated and I “came out” as the gay man I am. As a result, the Episcopal Bishop of Dallas excommunicated me. This would last for three years until I moved to Washington. I considered seeking a trial, and discussed the possibility with the Presiding Bishop. He asked me point blank whether I thought that would help in my goal, to build community, and my answer was “no”. In frank discussions with David Booth Beers, the counsel for the Episcopal Church and the Washington diocese, we explored the options. The church did not have any case against me; all they wanted was for me to get off the desk, to step down. It was an exceptionally stressful period. I had also come to learn and would ever after say, “No one should care alone, either.”
In 1989, I was assigned to the region office of the U.S. Public Health Service (USPHS) in Dallas, working with many seasoned public health specialists, including Jerry Moore from the Center for Disease Control (CDC), who lectured me every day for several hours for six weeks. He was a member of the Church of Christ, and worked as what we then called a “clap chaser,” an investigator focused on sexually transmitted diseases (STDs). He would go and interview people with a disease, asking probing and very personal questions; he knew the world I was entering well. Our office covered five states, which had completely different public health systems: Texas, New Mexico, Oklahoma, Arkansas, and Louisiana, plus the Indian reservations and pueblos which were yet again another system, for all intents and purposes independent governmental structures outside the bounds of the U.S. government. All in all, I learned public health from the ground up.
I quickly realized that public health is essentially evangelism. In the church, we offer you Christ and you get salvation. In public health, we offer you a change of your life and in exchange you live longer. The methods, the fundamentals, are essentially the same. And that was fine with me.
One of my teachers was my own boss, Assistant Surgeon General, the late Dr. John Dyer. His teaching went to the core of things; namely, that you have no power in and of yourself to necessarily change things. You build towards collaboration, coordination, and partnership—his central mantra—so that community, the tribe, state or nation can get the work done together! Thus you achieve results with influence. There was no money for AIDS then, yet I was let loose to build an AIDS response in all the jurisdictions, beginning with an address to the Texas legislature the week I started.
It was thrilling. We found people in all the places willing to take up the gauntlet and do the work, many of them people I work with or run into to this day: Tom Hudson, Dr. Charles Hotstetter, Dr. Sam Matheny, Dr. Joycelyn Elders (who would be Surgeon-General in the first Clinton Administration), the late Dr Jonathan Mann (who had just left New Mexico), Dr. Bob Bernstein, Dr. Bob Maclean, Dr. Gary Noble, and so on. They were an amazing group of people, all sharply focused on AIDS, and working in Public Health. Many were not at all what you might expect: gay people or those who were HIV-infected. They were people who clearly had a commitment to the health and wellbeing of others. They all taught me, and I found my way to being effective by being an impresario to everyone else. As we met each other, I kept introducing people who had different fields but similar interests, often working in the same building. That included people like Barbara Aranda Naranjo (now at the Global AIDS Program at HRSA) who I met working in a hospital in San Antonio, but who has a genius for networking, and of course the very well-known public health hero Dr. Jim Curran, now dean of the Rollins School of Public Health, who I met in 1985. Jim was the one who personally took on the problem of AIDS as an investigator at the CDC in Atlanta and would go on to become the lightening rod and leader of public health people around AIDS. I remember telling him the story about trying to overcome fear of AIDS in Dallas by drinking the communion cup last. His response was that indeed that was a significantly unhealthy act and should be discontinued, though obviously not because of AIDS!
What was clear was that the public health community, including people like Gary Noble and Bill Parra, had seen religion as a potential enemy for its moral rigor, so with me before them saying “how can I help,” I was a dream come true for them. We realized that we could be allies. We were working together: Donna Higgins, the person who was inventing VCT (Voluntary Counseling and Testing), a very young and pioneering Paula Van Ness (now chief operating officer, Peter G. Peterson Foundation), then fresh out of the AIS Project Los Angeles (APLA), who put together the national household information sheet in 1987 for Surgeon General Koop. There was great creativity, as we tried to respond and to build out of nothing. But a key lesson was that it was not about resources. It was about will. And religion has something, indeed everything, to do with human will and educating people about what they need to do to make choices.
I also learned how hard the choices can be. In 1990 I was in Louisiana under the Ryan White Initiative, doing a state tour with Joe Kimbrell, Deputy Commissioner for Public Health. We realized that the only place where regular AIDS testing could happen was in the free community clinics across Louisiana; many were the only place where you could find the well-baby clinics. We concluded that that was unacceptable, to full scale open access to all services for AIDS testing and treatment services by diverting the cost from services to women and babies. The choice was untenable though it did not make me loved as a federal official by AIDS activists. I learned to weigh the numbers of people involved, and why critical preventive services had to remain in place for the larger majority. There were simply not enough resources. That was the first time I was put on the line, and it helped me to understand what I would see in Uganda in the early 1990s, where there was simply nothing to offer to people who were dying, other than a few aspirin.
What brought you to Washington, D.C.?
I moved here in 1991 to work at the CDC National AIDS Clearing House in Rockville as manager of special projects; among them business and labor, and AIDS clinical trials and treatment information services. I was coordinating many far-flung programs. I had a partner who, four weeks after we got together, was diagnosed with HIV/AIDS, and was on the AZT regime and later on Interleukin II through NIH. I came to understand the day-to-day drug issues well—the sicknesses, side effects, and uncertainties. He was admitted in 1994 to an NIH clinical trial, and has been on it ever since. He is one of the world’s longest-living HIV survivors, with 33 years of documented life with AIDS. It is a miraculous story. But we came here for a better life and more opportunities to serve and became integrated into a larger community of leadership in AIDS. He had been recruited to the U.S. government and was working to implement the Care Act through HRSA. We were the typical AIDS family.
In 1993, Clinton had come to office, and he named Dr. Kristine Gebbie to the newly created position of National AIDS Policy Coordinator, or the AIDS Czar. Kris needed a religious person to respond to the CDC National Advisory Committee of which she was chair. I realized that if I joined as a priest, I would never go back to the federal civil service. I left the room and came back in a collar, never to return to the feds.
Meanwhile, I had quietly been rehabilitated over seven years by the Episcopal Church. The late Bishop of Washington, the Right Reverend Ron Haines welcomed me. I began to substitute for different clergy in the diocese, and helping out where needed. In 1993 I became director of the National Episcopal AIDS Coalition, which I had helped start in 1988. Two weeks later my partner, Warren W. Buckingham III, was asked to join Kris at the White House. We were the poster boys for AIDS. I worked in the NEAC office and the Episcopal Church for five years, and traveled all over America and around the world.
Bishop Haines made me his canon in 1998, and I was installed at the Washington National Cathedral, having come back from excommunication to a full role in the church. I thought my time with AIDS was over. Then I became involved with the White House AIDS office as an informal chaplain to the group, since the new AIDS Czar, Sandy Thurman, was a good friend. We talked a lot about Africa, particularly as I had history in Africa. Sandy led the first U.S. bipartisan mission to see the AIDS pandemic unfolding in Africa in 1998 and again in 1999. In those years, President Clinton built the forerunner of what would become known as President Bush’s PEPFAR program.
How did you become involved with Africa?
I first went to Uganda in the early 1990s, and that nightmare had shaken me. The Episcopal Church dioceses of both Dallas and Washington had relationships with Africa, particularly in Uganda, and the bishops there had asked the American church to come and help. What was most horrifying was that no one could do anything to help. People walked miles to be given a few aspirin to help them until they died. Thousands died, quickly and painfully.
That was a hard lesson: the government had essentially decided to focus on prevention and on the young, and were ignoring those who were to die. There was a notion of “acceptable losses” that drove their decisions. That was the strategy and it was supported internationally. Both health and development people make choices. What one hopes is that you make the choices with communities, but more often they are made for communities. In Uganda, people were not consulted. But in fact the government and public health people had no real choice, because they were not going to save lives—they had no way to do so. They had no infrastructure and no notion of how to build it. AIDS presented massive moral challenges, taking public health decisions beyond the person and community, enlarging them to questions for the society.
Since the mid 1980s I had worked with Archbishop Emeritus of the Church of Southern Africa, the Most Reverend Mpilo Desmond Tutu and his struggle with all of South Africa to end apartheid. I had seen racism in America and knew what it cost. But in Africa it was horrific. Because of that association, I was selected by Episcopal Church Presiding Bishop Browning to be part of a delegation for Archbishop Desmond’s farewell in 1996, one of a group of four, and spent some time visiting southern Africa. I was dumbstruck by what AIDS was doing to the region. People were simply sitting around: there was no response.
The Right Reverend Winston Njongonkulu Ndugnane was installed as Bishop Tutu’s successor, and he made AIDS one of his causes, after development. At his enthronement in Cape Town the first international Anglican AIDS Conference, a tri-continent conference, was held in Cape Town, with about 60 people present. When we spoke of AIDS, the clergy’s heads were nodding. The call to address the pandemic made a huge impact on people. I told him, (the Archbishop) based on what I had seen in my visit, “Njongo, you have to deal with AIDS.” He answered, “You don’t understand, after a lifetime of neglect at the hands of the previous regime, we have to deal with development.” But it was clear that development could not happen if AIDS was not dealt with. It was a deeply troubling situation because, by then, in the mid-1990s, the triple-drug therapies and protease inhibitors were about to happen. But in South Africa, it was as if nothing had happened on the drug front since AZT a decade before, as if nothing could be done. But South Africans like Kevin Osborne, founder of the National Association of People with AIDS in South Africa, were stirring. That was the genius in the epidemic, and he and others are truly noble survivors.
Although I was then working as a priest, AIDS was constantly also part of the story: at home, in the diocese of Washington, nationally, and now internationally. It came up constantly during the regular visits of Archbishop Ndunngane, Dr. George Carey (Archbishop of Canterbury), and many others. Always the same story and always the same fears.
In 2000 Archbishop Ndungane was leading a march in Durban with famed South Africans, Winnie Mandela, and Patricia DeLille. AIDS had skyrocketed on the scene. In December, the Archbishop was invited to Washington for World AIDS Day at the last Clinton White House. I wrote the liturgies and met with Sandy Thurman in my White House chaplaincy role. The night before the events, I learned an important life lesson: never drink scotch during a decision-making session with an Archbishop on an empty stomach. In the course of a long conversation, he suggested that I come to South Africa to help build an AIDS response. It was a major challenge as the province included 10 million people in seven countries, including the worst-affected in the world. Njongo argued that God has answered our prayers and it was clear what I was really called to do. I capitulated. The next morning at breakfast with the president, Sandy Thurman, and South African ambassador Sheila Sisulu, the President offered the Archbishop whatever support he wanted and the response was: “I want this priest, Ted Karpf, to come to South Africa to work with me.” Mr. Clinton, who never ever forgot a name, said “is that our Ted?” (as we had met over the years in various settings). So President Clinton told Sandy to “call Ted and tell him he is moving to South Africa.”
So after a tumultuous few weeks writing proposals to USAID’s Africa bureau, I was on my way to South Africa. It was at that time that we first met, Katherine, as I came to ask your advice and support. So, off I went and so learned how little support there was in South Africa. What was cooked up was an odd faith-based partnership arrangement. AIDS activist Kevin Osborne was now working for the Futures Group in Washington. The Episcopal Church had appointed me as missionary. Money went from USAID to the Futures Group to the Episcopal Church and finally to me. It was contrived, but the idea was to keep me ecclesiastically-based, so that I could legitimately function as the special advisor of the archbishop. Thus we created a faith-based partnership that no one could have imagined. One lesson is that bureaucratic obstacles can always be overcome!
How do you assess the South Africa assignment?
That period (2000-2003) has been heavily documented. South Africa was in the throes of the pandemic and it was horrific. In many ways what helped me understand what to do and how to do it was utilizing the power of narrative: I was there to tell stories of how people survived, and thus to raise the eyes of hope. It was important to make it clear that the first step is not just services; restoring hope is 90 percent of the story.
A lesson I took from the years there is that in situations of extreme poverty the first thing that is taken away is hope; hope for tomorrow and hope that things will ever get better. One reason why rampant greed takes over, where people totally ignore the consequences of their actions, is that they have no hope. When you live in that hopeless place of extreme lifelong poverty, you lose hope that things can get better. When money or resources come along, you simply take it all because you don’t believe you will ever have another chance. You have to understand corruption as a natural response. The reality recasts notions of greed. Poverty is a mindset and that is much harder to change than improving services. My personal ethic for change begins from a place that believes that there is hope and that my task is to help restore it.
My assignment with the Archbishop took me into the field to do strategic planning on how to meet the challenges of HIV/AIDS in 23 dioceses over a half a dozen countries, above all to listen. There were more than a dozen languages across the province so that was in itself a challenge! I set out to build a process, going from diocese to diocese. I visited all 23, and engaged them in the first steps of a process of strategic planning. On arrival though, he named me deputy, which suddenly propelled me into the full life and responsibility of a 10-million member province of the Anglican Communion. Somehow it was all getting bigger than I planned.
I was floored by the extent to which people, in the context of their culture, did not think about the future. It was here where I learned about time and culture and the cultural notion of time. In Asia, there is a profound respect for tradition and history. America has profound impatience with tradition and history, and focuses almost exclusively on the future and on problem-solving. And in Africa, the focus is on now, today. The ancestors, who are ever present, are not people from the past, but always there now, interacting with the present. The ancestors enact current, present horrors on people, now. It is a reality in which the rules are constantly changing, so that makes people and events hard to pin down. In a sense there is no history, so strategic planning needs a change of language. There are so many different words for tomorrow. In South Africa, people will say “I will see you just now.” That can mean some time far away. If someone says “now now,” that may be a few hours from now. But people are always ready for new people to enter the scene. It is not about being callous, but the reality is that what and who you meet may change your direction. I might not show up today or tomorrow if something new comes up.
As an object lesson of what I am talking about, I recall meeting a man in a township up in Zululand, standing in a sewage drainage ditch. His comment, smiling, was “Oh my God, what a beautiful day this is,” standing in raw sewage up to his knees with a genuine sense of joy. We simply don’t celebrate the now—today—like that. His attitude had a huge impact on me, showing how people truly inhabit the present. It brings a curious sense of optimism. But, two weeks later, I happened to go by the same place, and there he was standing in the same place saying the same thing. He had no vision that things would ever get better. Hope is not just optimism. It is more, as it carries you forward to a different image of tomorrow. Scripture does it better than I do, teaching that hope is “that which one cannot see.” It is both humbling and liberating and also takes us captive in time. I could only think of problem-solving, and had to learn to think in entirely different ways, celebrating life today but with an eye on tomorrow.
To live in the world means living in all three dimensions: past, present, and future. Religion is one of the few realms that lives within and utilizes all three. The best of religion tells you stories of past that inform the present and inspire for the future. That is the social function of religion. It speaks deeply, to the bones across time. It inspires curiosity, inspiration, and responsibility.
So we built an AIDS program, coining the notion, “We are building a generation without AIDS,” and that “No one dies alone and no one cares alone,” and we got it funded by the British government (DFID), the Americans (PEPFAR) and many others. It was, at least until recently, the largest funded program for faith-based AIDS work in Africa, at more than $30 million (Catholic Relief Services under PEPFAR may have surpassed that now). Nothing was easy, substantively and bureaucratically. Cutting across two DFID regions and several U.S. Missions was only one of the challenges.
Because of the work which spread across Africa, I got to know many more people. I became the coordinator for the Anglican Communion worldwide, and worked with the Anglican Consultative Council, with Canon John Peterson. Even though I am gay, I got results, so Archbishop Peter Akinola invited me to work with him in Nigeria.
In a series of disconnects and contradictions, the whole thing went sour. The Futures Group lost their bid to continue running the project. The new administrator of the program under the USAID initiative brought out new issues. For a period of six months there was a standstill. I was forced to leave, the international program collapsed, but Southern Africa continued unabated until the re-structuring of DFID last year. My response was to go for a very long walk (600 miles, from the South of France to Santiago de Compostela in Spain) and make the historic pilgrimage to put things to right, trying to figure out what God was up to and what I should do. I concluded that I should try again but in God’s own time.
How did you come to Geneva and the WHO?
One of Jim Kim’s colleagues called (he was then at the WHO), as they planned the great “3 by 5” campaign that aimed to bring treatment to three million HIV/AIDS positive people by the end of 2005. I did not believe it could be done and hung up twice. Jim Kim insisted that I come to Geneva. The idea was to build on the partnerships I had built over the past 20 years. I agreed to a 30-day contract. And thus started a new chapter that lasted for seven years.
I got to Geneva, and found a system, a bureaucracy, that was even more intransigent that CDC or the U.S. Public Health Service. I also learned that there is no such thing as a naïve partnership program. The WHO did not have power, but it had influence. I was back in the world of influence. I had to re-strategize and rethink who I am and what I am to be about. I spent seven years at the WHO, urging the leadership to take the role of religious institutions offering services in health and development more seriously and to give some meaning to the notion of “decent care”.
What I am most proud of in the “3 by 5” is that the first major grants of the effort where awarded to people living with AIDS: $3 million that went to the International Treatment Collaborative, a creation of the worldwide treatment action movement. That was thrilling. The disease-infected population had never successfully advocated for their input in a global approach to treatment. Something like this had never happened before in the UN. The WHO had made a significant step towards inclusion with this level of involvement, but more dramatically, autonomous national networks of treatment activists came together, fought hard for recognition and treatment competency and won with a fiercely competitive grant, with fantastic proposals. No one had gone that far to recognize the importance of community in a health response and that it was recognized and awarded a major grant was vitally important. There was a new re-connecting with the notion of community for me. It invoked the visceral messages of dignity and of the early years of fighting AIDS; the role of self-help as a critical measure of agency and solidarity, and the needed engagement of interdependent, affected people and their caregivers to ensure subsidiarity and long-term sustainability. This global movement of people with AIDS also invoked the community health spirit of the Alma Ata Declaration and Principle IV, that people have responsibility for their own care.
Another lesson that became obvious over those years in working was that faith-based communities did work and had access, especially in those situations where there was no one else there to offer and assistance. Often this meant that health systems were reliant on an old mission hospital, clinic and dispensary health system. But no one had described the system and how it worked. Activism about this at WHO was not required, respected, or expected. So naturally, I walked right on and began to suss out the territory.
In a surprising move from in-the-field activism, I became focused on research, something that I had to learn to do all over again. The knowledge gaps were huge. Through WHO, which insists on an evidence-based approach, there was some funding for investigations under the 3 by 5 program. Through this arm I was able to develop a relationship with ARHAP (African Religious Health Assets Program at the Universities of Cape Town, Natal and Witwatersrand) to find an evidence base in research using state-of the-art, community-based, community-driven research methods. I realized that without evidence nothing could be funded. I had to prove that the religious health assets existed. But in doing so I wanted to be sure that the research would encourage participatory methods, since I learned the value of such methods in southern Africa during my project with the church. The Global Information/Positioning Systems can only detect and count facilities. I needed to understand what the community was and how it is constructed and what it takes to actually have a health encounter. WHO supported me in funding a dozen different studies in different national health districts.
There was also a World Bank study of the impact of the Global Fund and PEPFAR in a district in Zambia, a highly focused multi-layered study. What we saw was that while the local Catholic order of nuns were good at feeding orphaned children, no one seemed responsible for looking beyond to who would feed the children after the program ended. No one was responsible. This was a real problem with targeted funding in a setting where there was no understanding of the context; a catastrophe as I see it. I was seeing this much earlier than the Reverend Dr. Dan de Giusti from the Catholic Medical Services in Uganda, who came to a fuller, carefully documented paper and presentation conclusion; namely, that AIDS money was not floating the boat of health services, but was in fact sinking the boat of health services. This ran against the tide of conventional thinking, thus was not popular good news.
It came back to the fundamental issue we had seen long ago a decade before in Uganda: the health systems simply were not there. There was no real stable infrastructure on which to build. While “3 by 5” did change the paradigm of what an AIDS diagnosis meant so that no one could believe that death was inevitable, without functioning health systems the programs were deeply dysfunctional. The contradiction and tragedy is that there is a payoff in international funding for moving from basic primary care and prevention/wellness services to AIDS-specific services. Standard health systems are simply not rewarded—as in supported at a needed level—by governments. Thus, for showing up and doing the work of community medicine, they show a deficit and become very fragile. The result of siloed disease-specific funding for too many was that as specialized internationally supported programs increased, government expenditures actually declined. The system even created or accentuated weaknesses. The key to the health assets mapping is to identify what is there and take it all—context, population, health systems, and major stakeholders and gate keepers into account. That is the vital first stage.
I have heard many stories that 40 percent of health services are said to be faith-based. Can you solve the mystery of where this number comes from?
The oft-cited WHO statistic that 40 percent of health services are provided by faith communities is my invention, and later the outcome of real research. I am not hesitant to admit that I put it forward, during a presentation during the “3 by 5” initiative, as a back-of-the-envelope calculation. The Roman Catholic Church claimed 29 percent of health care in the world, and I figured the Protestants, Muslims, Buddhists and Hindus must surely have 11 percent. But the facts at the time, actual evidence, were simply not there in 2003. Also there is just the fact that anyone working on the ground in the developing world knew that the numbers were somewhere in that vicinity.
Look at the health infrastructure in Africa, Latin America and Asia; it is clear that missionaries put it there. The notion of religious health assets developed by the ARHAP gave me a way to move away from using the term faith, a term that makes the UN and others even more paranoid. Sadly, there is real discrimination towards to the notion of faith anything, and a belief that most of the conflict of the world is about faith and religion. This curious eighteenth century view of the world, arising from the enlightenment, is about 200 years out of date. What does any of this say about economics and power?
The real lesson from ARHAP is that what is most important, and what needs most attention, is the proliferation of institutions and communities, and the texture of how people in communities make choices. The notion of the sangoma, a southern Africa traditional health figure who arbitrates where people seek health care, is usually overlooked. The sangoma is the case manager/gatekeeper for the health of the entire community. She/he is the person who should be part of consultative processes because the sangoma decides who goes where, and knows what the services are. Yet no one reaches out to consult a sangoma or educate one. For health systems to work well, governments and donors need to recruit these figures. They are the power centers of the communities, yet are brushed over because they are seen as too controversial.
Along with ARHAP, with this long and often tedious series of studies, WHO is now able to identify the elements leading to understanding the larger health systems in several countries, especially Zambia, Kenya, Lesotho, and Tanzania. WHO can now show what services are missing, and how people respond. Sadly many of these studies, after near six years, have not seen the light of day.
For example after five years, we have learned what mapping involves. The actual physical location is an important social determinant in what gets funded and what does not. Frankly, “if it is not on the map, it is not on the table,” and no one disagrees with that diagnosis. So we need to take that kind of GIS seriously, and that is a real struggle. I have retired from the WHO after five years of trying and gaining nominal acceptance for the notion of the role of faith-based, faith-inspired or religious health assets being on the map; but, it is not clear yet to what degree the acceptance of mapping indicators that includes a description of faith services will be carried forward. It is driven by donors insisting the faith or religious health assets mapping be included in the discrete international mapping processes. There was a real fear based on false understanding that religious assets meant churches. It does not. What is of vital importance is to know who runs, owns, operates clinics, and whom do they serve. These institutions/providers deserve a place on the international maps. I believe because of the challenges ahead in meeting the Millennium Development Goals that the world only has five years to accomplish it.
The real importance of these issues became clear with the recent H1N1 crisis, which was a real test of the international health system. In such a crisis, WHO truly calls the shots as the result of conventions that took 40 years to negotiate. The question is what do you do in face of pandemic? How do you manage it and contain it where possible? H1N1 was a dry run for plenty of other crises, such as the impact and movement of nuclear dust clouds, as only one example. We need to know what works and what does not. The H1N1 crisis made very clear what does not work, and that because the international health maps are incomplete—lacking the more than 40 percent of the health services infrastructure that are faith-based or religious health assets—there is no way to effectively manage or contain mega-illness or health crises without relying on them to do the work. But not knowing where they are or that they even exist means the whole world is actually compromised. So there is a new impetus to find out what exists in a practical and thorough way. We have to know where the providers are, whom they serve and how well. This will not be an easy process.
So a big problem in strengthening health system is that we don’t have a baseline. It is a serious mess. People involved with viruses have to know where services are, described in a consistent way. They need to be able to mobilize resources, have to document where places are, and governments need to recognize them. WHO sells maps to Google but they cannot be released unless the government approves. Some maps are many years old, and there is no way of documenting without permission, and given the sovereignty of member states, nothing can move and be listed officially without them. This takes valuable, critical time. So it is also clear that the world needs parallel data sets so that everyone can know where each other is and plan accordingly. What this really means to me is that an effort to build an evidence base on the role of faith-based organizations in health and development services is crucial. Thus I found that I had become an advocate of mapping as the first and most critical step. Now we need a few member states or foundations to get the point and act based on this critical challenge and support the mapping process itself.
You are always talking about Decent Care. What is that concept?
While at WHO, and based on the rich experiences of working in AIDS for the past 30 years, I wanted to find a way of synthesizing meanings of what I saw and did myself. The concept arose of calling it Decent Care. It was a way of describing how people took their lives and need for care and how they participated in the shaping and defining and directing how this care would work for them. It literally has revolutionized health care worldwide and I am its ambassador/missionary/evangelist and teacher.
Very simply, Decent Care is the way to describe the re-balancing of responsibility between patient and doctor, care recipient and care giver, people and their health system. It is a codification in practice, if you will of the Principle IV of the Alma Ata Declaration on primary health care. As I explored the concept with the support of the Ford Foundation for the past five years, I realized that Decent Care expressed my best hopes for care and support for all people. It was also a means of restoring hope and rebuilding shattered lives and broken promises. It is an important concept that goes to the core of human rights. In other words, there are rights and values behind those rights. I went to the values base and there found the place where hope is reborn and life is renewed. I even edited a book rather than write one myself, because it is about hearing the voice of the people. So I gathered voices from around the world. The book is called Restoring Hope: Decent Care in the Midst of AIDS, but it is really about people telling you their stories of hope, help, health and well-being. Very simply: “If you can’t hear the voice of people, care is not decent.” Perhaps that is a good way to end our conversation. To book, the concept, the notion is really a summation of my life lived at many intersections, but always with God and humankind at the center. Maybe that’s why I was the first and only priest to work in the WHO and to build a global health response to the crisis of AIDS. Restoring hope is the story about life and faith that is true everywhere.
