L. Peiperl, MD, Editor in Chief, HIV InSite: So Benkong, from where have you have returned to San Francisco?
Benkong: In January, I started in Malawi and there I was at the Amitofo Care Center, which is a children's home, and they were also working with the local support groups that were set up by Médecins Sans Frontières. And then after that, I was in South Africa where I have two organizations. One is called Center for Positive Care, named after the one I work for at UCSF, but it did not last; they changed into something else but I thought the program was good, so that is why I decided to continue the name and the idea, so the Center for Positive Care. You can see our website; it is www.PosiCare.co.za.
LP: Tell us about that organization.
BK: When we started in 1993, basically it was to let people in South Africa know that there is such a thing as HIV. When you look at the first South African cases being in 1991 and now here we are more than 10 years later, over 5 million people infected ... it is mind-boggling. It is absolutely mind-boggling! But we started out initially just informing people. Then, when people started getting sick, they would come to us and we would give them general information on how to stay healthy. Then, as people started requiring home-based care, we started doing that. Then, when they started passing away, leaving children, we started working with that. So we just followed the epidemic as it went, in all aspects of it.
LP: Does the South African government support Center for Positive Care at all?
BK: No, at that time, no. Totally none, because that was still under apartheid. Apartheid lasted until 1994; that is when we had the first elections. So prior to that, the South African government did not want to hear about AIDS, did not believe it existed, and the more conservative white people believed that--if the figures were like they anticipated--this would actually be an answer to their prayers because it would wipe out the black population. So, we could not get condoms. We actually set up--and in those days, we had to set up an underground system, where condoms that were being stored in Pretoria and not being distributed--we had people actually going in there and taking them and then sending them up north. We were in a homeland called Venda. [Editor's Note: Under apartheid, land was set aside for blacks in pseudoindependent territories called "homelands" (originally called "Bantustans"), allegedly to allow blacks self-government and cultural preservation. Residents of Venda were treated as foreigners in the rest of South Africa until the end of apartheid in 1994.] So the homeland of Venda was not getting what they should ... South Africa was a separate Department of Health; we had our own Department of Health and it was very dysfunctional. The head of the Department of Health at that time was totally unsupportive. He believed that the only way a black person would be able to not get infected with HIV/AIDS was through worship and through the Bible, they would find inner strength to not have sex. So he felt condoms were just a waste of time.
LP: And this was 12 years ago?
BK: Yes, that was in 1992 and 1993. So we set that up. We set up condom distribution points at all the bars, which of course are called "shabines." So in our district, we set them up in the shabines. Fortunately, in 1982, 10 years prior to that, I had lived in Venda; I was an interpreter for a Taiwanese company and so I had a network of friends who trusted me and believed in me, when I came back and started telling them, "There is this disease and it is real!"--and that condom distribution is to stop infection, not to stop the population growth of black people--because that was another thing that people thought we were giving out condoms for. So these friends that I knew in 1982, ten years later, they were in the military; they were soldiers; they were in government groups; so I had a very big open door and they were supporting me. I went to every single police station to talk to the policemen. I went to every military base to talk to the soldiers and also went to the prisons. So the door was open for me ... but the government did not support it. This was all just people. So it was a pretty amazing time.
LP: Was the post-apartheid government resistant to projects like this?
BK: Post-apartheid, everything fell into total collapse because they did not have a universal system. South Africa was a separate country. Venda was a separate country. They were all autonomous. There was Bophuthatswana; there was Venda; there were other areas--Pumalanga. These different areas were considered to be homelands. So what they had to do when apartheid ended was to create a central government. They had to create a central system. They had to end the homelands. So South Africa has a Department of Health; Venda has its Department of Health. There is a Department of Health for Indians and Asians. There is a Department of Health for white people. There is a Department of Health for black people. There with the blacks. Is it for Bophuthatswana? Is it Venda? So trying to get five Departments of Health under one umbrella--can you imagine? Who gets fired? Who is no longer director? Just as with the politics in San Francisco, what would happen if we would divide and then unite? So that fell into total bedlam for about two years, 1996-97. About 1997, things started sorting out, but by then, the infection was rampant. It was everywhere; numbers were very high.
LP: What is happening currently with the Center for Positive Care?
BK: We are now the biggest, one of the biggest, NGOs in Southern Africa and we have about 950 trained volunteers, but actually because of poverty, we do pay them. They have an honorarium of about 200-300 rand, so about $25-30, maybe $40 a month that they get, and we started out by training people who were in shabines, in the bars. We would identify who was the woman who is in charge of the other women, educate her, and then she would educate the other women in the bars, and then they would educate the soldiers, miners, and truckers that came into their area. So that is basically where we started taking off and now it is starting to spread. And then also the taxis; taxis are very important--taxi ranks-- because they do not have a good public transportation system, so people drive what are called "combis"--they are large vans that can seat about 12-15 people. So by educating them and getting them tapes that they can listen to and play to their passengers, it was a very, very good outlet for information ... and also condoms! They were part of our condoms exchange.
LP: And does the focus remain on prevention or is the organization now involved in treatment as well?
BK: Now, we are not getting involved in treatment. What we are involved in is educational because people are medicine-illiterate. So what is happening is that the drugs are coming without the education. So we have now basically three problems.
One is that there is no education, so people are confused about how to take their medication and because this is Western-based treatment, it is meal-based--either before your meal or after your meal--but what happens if you only have one meal a day? So in rural areas in Africa where Venda is and Central Positive Care is, people eat once a day, at most twice a day, and they eat when they are hungry. They do not have a 7 o'clock, 12 o'clock, 5 o'clock food routine. So that is causing a lot of trouble with people taking medication on an empty stomach and getting sick. Also, because of poverty, some people go a day without food, the very poor; so they are not getting nutrition. So taking such powerful drugs without nutrition is causing a lot of health issues.
The second problem is that since we are in the rural environment, to get the drugs after they arrive from the United States and get distributed, once we get a person on treatment after maybe two months or three months, suddenly their medication has stopped. It has been interrupted because the chain of shipment has been interrupted. So people are not taking medication regularly. There are always breaks and sometimes the breaks will be three months or six months.
The other problem is that when a person is taking medication and they start getting sick from it, because their body is adjusting to it and adjusting to the treatment or because they are not eating properly, they will then go to a different clinic or they will go to the black market or they will go to some other place and they will get the same drug with a different name because they are not reading the pharmaceutical name; they are reading the brand name, not the generic name. So they are taking maybe twice as much of one drug as they should be.
So that is why what we are doing now is educating them. We have a nurse from Zimbabwe, who is very, very good, who goes out in the community and visits all the people, all our clients and then looks at what they are taking, explains these things to them.
LP: And is all the work within Venda?
BK: No, we are expanding out of the Venda area, mainly because the system that we set up works so well. So, funding now is coming from the Aid the Children Fund; it is coming from local government; it is coming from NAFROM, an Australian NGO. Our budget now is about $700,000 a month. So we have a huge budget, lots of people in the field.
LP: Do you know where they are getting their medical information?
BK: The medical information is coming from the Department of Health. If you look at the biggest medical information supplier in countries outside of South Africa that do not have such a good Department of Health infrastructure, it is Médecins Sans Frontières. They are everywhere! They are doing very, very good work.
LP: So in a way, you have managed to take a UCSF model and export it to a developing country and have it become self-sustaining ...
LP: ... and locally staffed and with local leadership.
BK: Well, the model itself when I was working there, it just struck me as being the wisest way to do it. I had already lived in Africa, so when I was working at UCSF, the idea with Center for Positive Care is that all services are under one umbrella. When a client walks into that office, they could be tested for HIV; they could get their results. If they are already infected, they have counselors. They even had, you know, a clothes closet; if people are unemployed and poor, they need clothing. They had transportation tokens. So this made a lot of sense to me because, in Africa, people cannot travel. Transportation is difficult, timely, and expensive. So if they go someplace, they need everything. It is one-stop shopping. They cannot be referred. Information referral is useless. Many people cannot read and write. They cannot be referred out because how are they going to get there? So that is why this model made a lot of sense and that is basically what we did. So when I went there, we sort of grew with the epidemic. As problems arose, we dealt with that and then we looked for a funder and initially we worked with factories because they were losing staff. We worked with insurance companies, Home Mutual, and then we worked with the football clubs, the soccer teams, because that is where all the youth go, and that was our local base. And then, of course, the traditional authorities: You have to visit the headmen; you have to visit the chiefs and be sanctioned. And as a white person in that community, going on Sunday--they call it "escola"--where the community comes together and then you present your situation. So the fact that I was willing to do that over the Department of Health got a lot of support.
LP: How did you get to Malawi?
BK: Well, after ... it was a funny situation because when I started the Center for Positive Care, I said to the people working with me that I started doing AIDS work in 1987. I will only do AIDS work for 10 years, then I want to move on into other things, not realizing that that is impossible! But anyway, that was the initial idea. So in 1997, I started moving out and spending less time in the organization, and then I started moving into the Buddhist temple, interpreting for the monks, and helping with their seminary and their training program, and I was spending less and less time. So, as I was still available but spending less time at CPC, local staff had to take over jobs, they had to manage the files, they had to apply for funding, they had to do the banking, and then every couple of weeks I would go up and point out what things were not working right, see where they needed more education, and through these NGOs and USAID, find out who could educate them. There was a lot of funding in those days for training-capacity-building they called it. Then I started managing a wheelchair donation program and started going to Malawi on a regular basis, and I said to the temple, "You know, we really are going to have to set up a children's home," because the goal of the government is to do home-based management of children who are orphans, but it is impossible. A family could barely survive on its own. How are they going to be taking in other people, you know, so the government was looking at extended families, not institutionalized care. But I said, "We can set up a village nearer the typical African village and get orphan grandparents," because they are losing their children and now they are old, to take of orphaned children, and we support them with food and education, clothing. So they started doing that. That is how I wound up in Malawi.
LP: Where in Malawi did you first set up a Children's Home?
BK: It is in Mapanga. Mapanga is on the Zhomba Road between Blantyre and Zomba, which was the old capital. So we are roughly in between those two places. It is a very beautiful, magnificently beautiful, place. It is not as cold as San Francisco and it is not as dry as San Francisco but it is also not very, very wet. It is not tropical because we are in the mountains; we are 1,600 meters above sea level.
LP: Is that Children's Home still operating?
BK: Yes, James Nissi is now wearing my shoes and the support groups were set up by Médecins Sans Frontières because the way they do it is, they go into a local clinic, they do the volunteer testing and then after a person tests positive, they screen them and if they have a CD4 count below 200, they start giving them medication, but one of the criteria is that they join a support group. You see? So the support groups have about 45 to 50 people.
LP: These are adults?
BK: These are adults and what I was doing there with James Nissi was getting these support groups to register as CBOs. Then they can apply for funding from government and all this Bush money that is supposed to be out there. They can apply for all of that stuff but they have to be registered. If you are a support group, no one is going to fund you. And it is difficult for them to be a CBO because they do not have the money to get into town to get the application. They do not know how to fill it out. So once again, it is just giving them the skills that they need to do that.
LP: Last spring, you wrote that people were unable to take their medicine because there was no food to take the medicines with.
BK: Yes, and they were getting very sick from that. At that time, we had estimated about 500-600 deaths because of famine and we had 700,000 people who needed food assistance. So when you have food assistance and you are also trying to give them medication assistance, it is very, very difficult. But one thing that works very well is PVM: protein, vitamin, and mineral. It is in a packet and it looks like very fine flour and you just mix it with clean water, boiled water, and that supplies you with enough that you can be supported. It nourishes you enough that you can take your medication. It will fill your stomach. The problem that we have is the distribution because, trying to get it into the different groups--you know, people have families and in Africa families are very big but if you are responsible for moving PVM packets up north and your own family needs it, where is it going to go, really? You know, so there is a lot of disruption along the route, so you do not get enough for everyone. So one of the most trying things was distributing, and people volunteering not to take, in support of others. Famine is very great. To see people trying to distribute food--and the beauty of it was the support of the group deciding who was the one who went without last time and then they would distribute amongst the others. So I think that the skills are there, the tools are there, the attitudes are there to make things work. It is just that we need to have people in the field who can go in there, stay with people for six months or one year and see what is the problem, you know? Not to come in with a preconceived notion of "there is a problem here and I know what it is and now I am going to set it right." But just live there and then when you see it, "Oh, so this is the problem." Then see how you can sort that out.
So another very good group there is Medical Sisters of Mercy--the ones who trained Mother Theresa. Before Mother Theresa, they were the ones out in the field. They are nuns and they are all medically trained, so they offer a lot of support to children and for people infected with HIV.
LP: So in Malawi, were you able to provide shelter or housing, or do people come from the villages for these support groups?
BK: We were building structures for the children but there are three levels of orphans. The ones who are completely destitute--they have no one--and that is a minority; then the second one is the local children who are orphaned and living with their own families but are not getting enough food, not getting educated, and not getting clothed. And then the third is those around in the more rural areas, who cannot come in, the family does not want them leaving, or there are not enough beds to accept them, and then supplies must be distributed to them. So that is why Westerners who go to Africa will think that people are lying. Because of course, you will go to a Children's Home, you will say, "How many children do you have?" and they will say, "750" but there aren't any children ... because they are caring for them but they do not live there. They just come. So there are some centers that are run by tribal authorities, where the headwoman or the headman in that village will identify the orphans and then every Friday, they will come. A lot of them are Muslim, so they have a tradition of donating to the poor on Friday, so after they go to the mosque, they will congregate in different areas and then things will be distributed. Now what we are doing with the Center for Positive Care in South Africa is trying to support our youth group, which is called Rainbow Youth, but it does not mean they are gay. South Africa is called the "Rainbow Nation" because it is multicolor. So we have the Rainbow Youth, which is part of the Center for Positive Care, and now we are negotiating with the headmen in our areas to determine which land does not belong to anyone. Then the youth will plow and till that land, use organic means because fertilizer is expensive and poisonous, and then the food they produce is distributed to the orphans. And a lot of the land is clinic, on the clinic grounds, the hospital grounds, so when you visit the clinic in Venda, you will see rows and rows of corn, you know, and not flower gardens. Every place is planted with corn because that is a staple.
LP: You had mentioned political unrest in Malawi and bandits going through the area.
BK: But that is poverty ... yes, that is very difficult. There are three problems now. One is that people are not accustomed to the election method. They do not know how that works. It is new to democracy because prior to Mutharika, who is the president, there was Banda who was a dictator for about 40 or 50 years. So the election process is difficult, so that causes upheaval, and also suppressing the opposition. You know, opposition is the enemy, you see, so there is that kind of conflict.
Even though it is no longer as it was when I first went to Africa 20 years ago, crime is becoming more organized because a lot of warfare--the Mozambique war is over, the Zimbabwe war is over; the ANC is no longer a terrorist group, so that war is over. But the weapons are out there and people have been trained in warfare. So when people become poor, the men know how to get food. So when bandits come, they do not come as one person breaking into your house; you will have a truck come out with 20 or 30 men and they throw hooks in the windows and then tear out your wall, and then they come in and just take everything and people who resist will get their hands usually cut off, to instill fear. So we live pretty much in a fort, which is very unfortunate, and when people see you have things to supply to the community, then you are a target. So, you know, fortunately they do sometimes get to see kung fu movies so they think Chinese and Chinese monks are kung fu specialists, you know, they are a little bit afraid.
Another situation that happened in Malawi was that 5 people were identified as Al Qaeda and somehow wound up in the hands of the U.S. government and somehow got deported to Cuba. Now, Malawi citizens are in the hands of Americans and Home Affairs are saying they had nothing to do with it, so it created a very strong Islamic movement, very anti-American, and they burned churches and destroyed automobiles. They attacked the Catholics, Save the Children, and SOS--Save Our Souls; and it was very unfortunate because they are the only ones they could reach to show their anger, whereas the organizations are doing community work and doing good jobs, and of course, there are 53 countries in Africa. If your organization puts in a million dollars and it gets burned to the ground, are you going to invest there again? No. So when these things happen, they start pulling out. So those are the problems that we had. It was very, very frightening at that time because there were too many questions.
LP: And that is why you left Malawi?
BK: No, I left because of malaria and other health issues.
LP: How was access to physicians or trained nurses in places where you worked?
BK: Very scarce. Just to give you an example, I worked ... the main support I work with is in Mbulumbudzi. Mbulumbudzi has a village clinic that services a population of 12,500 people; there used to be 15,000. The population has declined in the last four years; now it is only 12,500.
LP: Because of AIDS?
BK: Yes, because of AIDS, malaria, and TB. So we have 12,500 people in the clinic. The clinic has three registered nurses; a doctor comes once a month. So just try to imagine what that has been like. Once a month.
LP: And what do people do when the doctor is not available?
BK: Well, you see the nurse and then the nurse would diagnose you, and then if you need to see a doctor, they will tell you to walk to Chiladzulu Central Hospital, which is--to drive there is about an hour and a half--so walking would be about six hours. So you see, they just go home and then, you know, the reason why most people do not follow up on their treatment is because of death. And that is the way it works. Our death rate is tremendous. It is actually beyond comprehension. You know, when you live there and when you work there, you feel like you are in a science fiction movie because the amount of death, funerals, when you go out, it is just constant. You know, you will always be seeing people selling flowers in the fields in groups. You go to the bank, try to get something processed, get something done, you cannot because she is at a funeral. So it is affecting every single aspect of life. Everything is slowing down, things are breaking down and now the street cleaners and the gangs are forming into groups and bands, and it is getting very, very discomforting.
LP: And how useful are computers?
BK: Oh, they are essential! And cell phones, even more so. We do not have telephone lines and telephone lines are often cut. Power lines are often cut and the reason for that is because people need the copper; they sell the copper. So, very often if a power line is cut, it is cut for maybe, you know, 500 meters or 600 meters and then they will cut the line, coil it up, burn it, burn off the rubber and then sell the copper. So that is why we get a lot of disruption.
So the problem we have is that sometimes we are without electricity for 4 days or 5 days, so then you are offline. The second problem is that, when your electricity does come back on, everybody is trying to send out their email. So because everybody now is online, you only get 20-minute brackets of online time and then it automatically cuts. So the way we deal with emails is you have to get online, download everything onto disks or onto your hard drive, and then get offline, then answer everything. To search the Web or surf the net is impossible. You do not have that much time to look up something and when I first got in contact with you it was because the neuropathy people were suffering from their feet, and their legs were becoming very hot, and the liver problems, skin problems. So it was difficult for me to get information, so that is how I would ask people in the United States, if you could look this up for me and then cut out all the pictures and all that stuff and just get it down to basic text that I can receive as an email.
Cell phones are essential because to try to lay a telephone line is so expensive that those are now becoming obsolete. The only reason why we use telephone lines now is because of the Internet. The rest of the time we use cell phones and then what is going to be a boom is the satellite work. It is just coming now to Africa.
LP: Would CD ROMs be useful?
BK: Oh, yes! CD ROMs. Yes, they are working. We are getting a lot of information like that.
LP: So where, in your experience, is this need for information the greatest?
BK: The need for information I think is number 1, drug information. We are very lucky that we have Médecins Sans Frontières, but they need to educate people about generic names and names because people are killing themselves with drugs. We already have one death that I know of because people do not know that they are overdosing. She was registered with the local clinic and she was not happy, she was still feeling sick. So then she went to another clinic in a different area and re-registered. They also gave her drugs, which were identical, but the names were different because the pharmaceutical companies were using different names. So she thought she was taking different drugs and actually she was getting the same, so she was doubling her dose. So, that education is necessary.
LP: Have most of your efforts been within the context of a Buddhist organization or has it been more you on your own?
BK: It is pretty much on my own. The temple needed me because I am an interpreter. So when people need you, you can write your own ticket.
LP: Oh, I see. So it was not a primary mission of theirs to prevent HIV.
BK: No, they sort of had to, with me working there.
So in our guest house, for example, on one side of the information rack is information about Buddhism. On the other side is HIV information and condoms--boxes of condoms.
LP: Oh, I see. So that was a combination of you and pressure from the South African government?
BK: Yes, you have to do that. So I informed them and they were more than happy to do that. They are not resistant because, with Buddhists, it is an educated decision. There is no doctrine regarding condoms.
LP: How do South Africans receive the Buddhist monks? Are they becoming monks?
BK: Well, more and more Africans are getting interested in Buddhism, but they do not really like this temple kind of thing, you know? They said, "You built this to laugh at our poverty."
You see? If you have that kind of money, build a hospital, build a school, you know? That is how Africans think. But the thinking of the Taiwanese Buddhist community is, first you build your monastery, then you educate and train monastics, and then they go out into the community and do community work. So that is their thinking.
LP: Tell us where you are working now?
BK: Now, I am working here with you!
LP: I should know better than to ask a Buddhist monk that question.
BK: I do not know where it goes. I am a mendicant monk, so we just go wherever. We do not have an order that supports us, so from here I will go to visit one of our friends in Salt Lake City and then a friend in Pittsburgh, and what I want to practice now is the Maitreya path and there is a type of Mahayana Chinese Buddhism that has pretty much disappeared, which is the Maitreya practice, the coming Buddha, and I am very curious about this for many reasons and I have seen lots of omens directing me there and because I am an interpreter and a translator, I would like to try find the material and translate it as quickly as possible. A lot of it is out of print. So that is going to be my focus. But being in New York City is very good because it has everything; they have everything. So this will be a very good support for my AIDS program in South Africa.
LP: Is there anything else in your story that you would like our readers to know about?
BK: I think that the greatest thing that happened to me was that I was in San Francisco; I was in the right place at the right time, because it was just happening when I was here. I came here in 1986, a friend's lover--in those days we did not say "partner," we said "lover"--he had HIV, he was already sick and then I went and stayed with them for about 10 months because my mother had multiple sclerosis and I knew how to work with people with no appetite and I got to see it and then decided I am going to learn everything I can about this because it is cancer, it is Alzheimer's, it is multiple sclerosis, all that wrapped into one. And when I was at the AIDS Health Project, the Center for Positive Care, we were right with the epidemic. Things were happening and we had to figure out how to deal with those things. I was working at the clinics giving results to a large number of people coming positive; every night there were people who were HIV positive. So coming from that background, it gave me the skills--not so much that the Center for Positive Care gave me, you know, a guideline or something that I could follow in Africa. What it gave me was the ability to create, to look at a situation and say, "Okay, now we have to figure out what to do about it," and then try things. So I think that is the greatest that we had here and I think that so many people in the San Francisco Bay Area should be taking their skills now to China and to Russia and to other places because now it is manageable here because of drugs and other things, but Russia is going to have a horrific time of it; India is now having a horrific time of it; Africa is going through a very difficult time and will be. So I would just like to see more and more people get out of the Bay Area!
LP: Thank you for speaking with us, and for the work you have done.