Harvard Book Store; WGBH Forum Network; Saturday Is for Funerals: AIDS in Botswana

So this evening on behalf of Harvard bookstore I'm honored to welcome Unity Dow and Max Essex for discussion about their book. Saturday is for funerals. Saturday is for funerals explores the HIV AIDS epidemic in Botswana. This book not only looks up into the lives of people living in the midst of an epidemic but also provides a detailed analysis of how society successfully tackles a major health crisis and provides a model for other nations. Esteemed novelist and Dr. Abraham Verghese hail Saturday's funerals for its ability to quote bring to life the utterly unique stories of the people in Botswana. Universal stories of struggle suffering and redemption with which we can all identify. The partnership of an Essex storyteller and scientist results in a precious alchemy a book that is engrossing transforming an important addition to the canon of literature of HIV. Unity Dow is a judge human rights activist and writer from Botswana. She has written four novels including juggling truths and the heavens may fall. Her fiction focuses on the tension between Western and traditional African values. Gender issues and issues of global poverty. As a

lawyer she earned acclaim for his stances on women's rights and was the first woman to serve on Botswana's high court. Earlier this year she was sworn in as justice of the interim Constitutional Court of Kenya. Max Essex is a professor of health scientists at Harvard University. Chair of the Harvard School of Public Health AIDS initiative and the chair of the Botswana Harvard AIDS Institute in Botswana has been involved in AIDS research for over two decades holds nine honorary doctorates and has received numerous accolades including the Lasker Award the highest medical research award given in the United States has published over 500 papers in 11 books including two editions of AIDS in Africa is in general we're so honored to have Max Essex and Unity Dow with us tonight. Please join me in welcoming them both. Thank you. Thank you very much. I thank you all for coming. Thank you again for arranging this. Thank you Martha and me and

Les for helping to arrange it. Thank you and we're happy you came and we're even happier if you read the book which I think you will have to this. And I should begin maybe by talking a little bit how the book came to be as opposed to just some of the detail in and I'm going to ask unity to do some of that. The book came to be because we sort of recognize that there was a need to fuse together. The this fear and agony and sometimes in a latent moment and occasionally joy. About this horrible tragedy of HIV AIDS and Africa especially southern Africa where some of you may not know it's much worse than everywhere else in the world including the rest of Africa. Rates in southern Africa her

are four or five fold higher than in other parts of Africa that you often hear more about such as you go on the road or Central Africa and pharmas that year Congo etc. I'm so it's a very very serious problem there. And one of the things I do is to teach a class here across the street to undergraduates. And it's always a challenge to get them to appreciate both the science of AIDS especially AIDS in Africa and the human tragedy. And I thought the best way we might approach that would be to fuse together the actual stories that help illustrate the problems of transmission of treatment of death of oftens of transmission from mothers to the children of. Problems when treatment doesn't work and drug resistance occur as

problems in making a vaccine problems problem problems. So I wanted to find somebody who could do that very well. And it was obvious that the one who could do it very well was unity. I'm sure some of you have read her earlier books and. As opposed to probably the only other author you've heard about who writes about Botswana. Alexander McCall Smith was a friend of both of ours but nonetheless he always read about light topics and and sort of easy to read things unity on the other hand writes about the pressing things not only bits and then oh it's depressing but that was really what we needed for this. So it seemed pretty obvious that she was that one that that could best do this and and somehow keep people interested and then hopefully they'd read the end of the chapters and and

learn a little bit about the science of the problem. So we had the site dear. To three years ago I went to a friend. In Boston as many times with who some of you might know who is actually a lawyer who are. Authors and that wasn't why we went to me as a personal friend which was really the reason we went to him and we said look we've got this idea for the book and unity who is this great novelist will write these stories and then I'll spell out what they aren't in science. And he said but wait. She's doing fiction and you know doing on fiction there's no shelf in the store. If I had a fiction and half nonfiction you know so one of you has to switch it in she said why would I write fiction anyway as I know so many people I know so many difficult situations that I can certainly write nonfiction

so it is indeed nonfiction. You know only the names have been changed. And I would just close by telling you very very briefly about some of the exciting progress that's going on in Botswana and not just exciting progress in relation to acceptance of the people of their difficult dilemma but exciting progress in research. And for example we now have time for the last few months techniques to essentially stop breast feeding transmission of HIV which we didn't have before. That's very important because infants faced in the past in sub-Saharan Africa with a choice of either breast feeding and getting HIV or not breast feeding and taking formula or in getting diarrhea and respiratory

diseases and dying from those because they get dirty water or inadequate protection of other types. So we think that's that's a step of real progress. And secondly as an extension of that and hopefully how we can learn from that. We started a new project in the town of maturity which is the town where unity comes from and that actually wasn't the reason we selected it although although some of her contacts with Chief the fellow who is the tribal leader of that district certainly made a big difference in our selection of maturity. We're now trying to extrapolate what we learned about how to protect infants from infection from their mothers to prevent transmission between adults heterosexual transmission. Between adults who were. Desperate to have children as most adults are. And we believe we've got a good

design we've just started the project in the last few months it will take three four years before we have results. But where at least I am optimistic and unity is helping me I think she's a mistake to trust there are many other people in the project. Molly Pretorius home who's here isn't one of them the project than many others. So I would encourage you to to read the book to not think only about. What horrible circumstances so many families had to go through when individuals had to go through in Botswana. But then at the end Think of how. Progress has begun and progress is now increasing incrementally so that we can I think look for generations in the future where AIDS will not be a devastating disease. Even in Southern Africa the way it is today.

Thank you unity. Thank you Max and thank you very much all of you for coming today. Of course Max is right. I depress you and the book. But he then he uplifts you. You know because I think that I have met you know. I've not met anybody you know who is as optimistic about the future of you know the age of the work in Africa as Max has been. You know so I think this book is not you know I tell the stories of people living loving thriving you know struggling with HIV AIDS. My response you know to that story by picking you know can outs from the you know those stories and building hope around them. You know I tell a story about how my mother sees the epidemic

you know and he tells a broader story about the science of epidemics and how he sees the possibilities of getting as you know getting out of this pickle. I tell stories you know of a teenager you know and we all know teenagers all over the world really terrible people. You know we've all been teenagers you know that. But you know and he poses and of course if you're teenager with problems in Africa it's not drugs that you know you know you're going to have problems with is going to be you know any pregnancy and with the consequences of possibly HIV infection you know and he you know he brings the signs around about the possibilities that could happen. And but it also brings the hope you know if I could possibly could possibly succeed. So for me this you know. You know I say and I say really you know honestly that sometimes I read the stories that I wrote myself in the you know months later and sometimes cry because I know that it is the stories of people who live around me and

some of those people have since died. Some of these people have been since you know been helped so much. So it's really it's a continuing stories that go way beyond the pages you know long after you close the book. Those people's lives will still be there. You know those people's lives you know was they'll be affected impacted on by HIV AIDS. So often people say who is this book for. I think it's for everybody it's everybody who cares about humanity. Is everybody who knows that in every story there's a story about themselves. You know I don't believe that anybody can read this book. An aspect of it and not see a piece of themselves a piece of their family a piece of you know people they know and they laugh even if that piece they see has nothing to do with race but it's all about struggles about disease about health or lack of health you know about life love you know and struggle. So it's been really wonderful you know collaborating you know with Max as he says when he first came to me and suggested this you know he says I said Yes I mean but of course I said yes he's a professor from

Harvard. I mean he's a guy is someone who's been working in HIV AIDS in Botswana I respect him greatly. So of course I said yes even before I was sure that what I was talking about you know so only after a letter said I is that really possible you know. But I knew that if he thought I was going to be possible you know that he has filled me with so much hope in the last 10 years that I've worked with him I've worked with haven't and therefore I knew a project that you know he comes bearing has to be a good project so I'm really really excited about you know the journey that we've traveled and together and you know I guess honored to be asked and I'm sure we've learned a lot from each other in the last you know years that we've worked together. And I'm really so happy that you're here to be part of the celebration of that journey. Thank you very much. Oh well that's probably.

What you want to hear. Yes it gets there's. And then I'll read it all. You know me from just a few paragraphs from the first chapter in the book on page 5 which is titled my family a few notes. And to that title Mike's response to the epidemic. So if this particular story gives you a personal view of somebody living within the epidemic and then the second part of the chapter you know it's Mike's not giving you an idea what is an epidemic and compare with any epidemics and widespread damage this is special.

My parents are in their 70s and this makes them the senior members of their respective extended families. Hardly a wedding or a funeral in the neighborhood or the family can take place without the attendance. My mother says that the good thing about weddings is that they can be present. Funerals usually cannot as they cannot be sure as you cannot be sure when death will strike. But with a climbing rate of AIDS deaths funerals are taking up every Saturday squeezing weddings out of the agenda altogether. Nature is going crazy she says. There has always been a balance between death and death but no more. We are bearing babies with their parents. How can they have a future she says. It is Saturday in 2007 and my mother has not been to a funeral in two weeks. She's grateful for the recite she whips out three figure programs here and she says here you men will be have heard about these deaths. She was my. She

goes on she explains how she was related to three deceased persons. One was a realtor has her great great grandmother and the other in some equally distant way. She does not think that relations were so distance is distant and still beaks me for not taking relations seriously. She keeps you know programs like many other people because so many people are dying that it is difficult to keep up. If you've ever seen someone for a while and meet their mother you have. After them perhaps they have died and have not heard about them. It was like it was not like this before she says. You must remember people's children and be sure to ask after after them. How can I ask about people who may be dead. I remind her that things have improved. She has not been to a funeral in two full weeks. My youngest brother who lives in a home with her parents pipes up that he has not dug a grave in three weeks. He too is grateful for the break he can remember Friday night in 2004 2005. But he did not dig a grave. No no a week during those weeks. Yes but he did not

ride the truck to collect firewood for some funeral or another for my mother. If you know of a relative or a neighbor and in a village setting these terms are defined very liberally demands attended every even press for the time of the present death to the date of the funeral which would typically be the next Saturday 6:00 a.m. in the morning as well as an overnight vigil the night before the funeral. In the case of a particularly close relatives she must spend nights at the home of the deceased person with Addison and members of the family. My mother is generally dissatisfied by the funeral attendance of her children. She feels we do not attend enough funerals. Who is going to bury me she says when I'm dead. If my children do not bury others my sister jokes that we are big enough family as a family to bury our own. My mother face appreciate the humor. I'm going to be eaten by dogs the way you carry on my funeral will be the talk of the village. She exaggerates but she is correct. Since I started claiming lives with such regularity that

some families have had to quickly bear one family member during the week to make way for the another over the weekend. We have not been able to keep up with fewer demands and the typical sanction for punishing a family whose members do not attend funerals of others is for a crowd to attend the funeral in their family but do not eat the food provided it is considered the height of insult to be left with pots of food and knows no one to share them with. And my mother lives in fear of this ultimate insult. My brother tried to mollify him but I attend funerals I digress all the time. You should not worry. Yes at least dogs will not eat my feet but who will eat with you afterwards my brothers your brothers never attend funerals. Funerals are exhausting undertaken for the close family neighbors and relatives during the day is needed if you know they have to brew tea baby pepper bread cook sorghum porridge with spinach or cabbage and press go to go to the meat for the close male relatives and neighbors. The work involved during the days before the funeral includes collecting

firewood and killing sea skinning and preparing the goat or cow in the family could afford such a luxury. The night before the funeral is particularly busy mending the grave and cook the meat women cook the sorghum porridge maize porridge and Sam that must be sent every few know why bring tea for every for every throughout and over an adventure of singing and of singing and preaching and my sister am the food is ready and proper begins now and so that is a piece from a few notes. Thank you. That is exactly what the title is trying to say you know that traditionally only Saturdays after funerals but I mean so many deaths you know that. So the statement of fact is Saturdays of a few notes but also the question whether every Saturday should be for funerals and as a matter of fact what is the Democrats done is that they claimed all started this and spilled onto other days as well. So it's really a play on

that whole idea you know that you know if you are saved by claiming you know in other days other than a few other than sort of this and in fact as a matter of fact during that time it's changed quite a bit since you know drugs that are to work. Is that grace at home only at night as growing up I've never seen anybody degrade. Because said this they dug by young men at night. So in the morning find a grave but now it was getting so commonplace that you actually saw people in the day it was like the height of shock you know. So there were so many deaths that actually rituals that had to change as a result of that or the demand on people and time. Everybody would know by the course of death was but it would not be named. I mean the monster in the room would not be named. And of course with HIV AIDS it doesn't kill you. Killed by some other activity. So it's

easy to say they died of TB is easy to say you know they died of diarrhea. You know it's easy to say to name something else and I voice you know really what is and are lying. You know why a 25 year old well Fadia old why Thirty five year old is dying you know the prime of their lives. Is that changing. It's it's unlikely that you're going to hear it if you know because if you go at home it's like there's an end of the funeral. Then there's an announcement as what actually killed the person. So it's. So people will say this person died after a long illness after diarrhea or this people died you know after coughing so even if you had cancer even if it was you know high blood pressure it's unlikely that people would actually. The more name the symptoms as opposed to maybe the medical you know what you find a medical certificate. So but the reality of it I mean you're right I mean even in my work place if somebody dies then the note is passed around for people to call it to continue some

money to go to the funeral you know and becoming so many that people cannot keep up you know especially in those years of 2004 2005 and really one hopes that with the kind with book of habit and research shows that this tide can begin to change. The good news is that breast transmission of HIV has been arrested or ways to prevent it. But it makes me wonder. If there is a medication that's being used because women breast feeding typically urge not to take medications. Friends of mine caffeine alcohol and so forth so I'm just wondering what you see to be a tradeoff. So I don't know how much you responded.

Yes it is medication but the approach involves starting the medication late enough during gestation so that any significant danger of poor birth defects in the fetus and the child to be born are. Essentially nil and continued use of the drugs in the mother while she was breast feeding and then it's interesting to see how it works because it doesn't just work because the drugs act to decrease the levels of virus in the mother's milk. They act in part because the drugs flow through the milk into the infant and protect the infant in a prophylactic type of way so that the infant then becomes a little bit like. Someone who had a needle stick accident from an HIV

positive patient and wanted to protect themselves from the virus getting stopped in the body so they take drugs right away. But the dosing if we can call it call it that that happens through breast feeding is actually a very efficient way of keeping up. The correct levels of drug in the infant as well as reducing of course the level of virus in the mother. But one has had very good governmental leadership not only in the court but in the executive branch as well. And the three now fourth just started as president. But the three who have been president in the past have all been very responsible democratic type leaders. They did care a lot about the country and haven't sought to. Make

the country's fortunes their own. And the president who just finished recently President Festus Mogae high initiated a program that he called out in which unity talked about in a talk earlier today which was really the first in the world. Approach to getting people. To find out the status and get tested. And this was an approach where when someone goes into a clinical hospital for any reason from an. School health examination to two automobile accident or vaccination. They're asked if they refuse to have an HIV test and if if they like one or something but do you refuse the putting the reciprocal kind of

slant on the question so that you will look a little bit stigmatized if you refuse Maybe I don't want to get into the ethics of that which was challenged for a while. But that does in fact result in a situation where the numbers I've heard last are that something like 56 of 58 percent of all adults in Botswana know this status whether they were infected or not. And you think of that with respect to any other country in the world including the U.S. and other countries in Africa and it's fun Farai and it's also stated by the World Health Organization For example that that 85 to 88 percent of HIV positive pregnant women. Get these drug cuma prac profile axis interventions to prevent transmission to their infants and that 85 to 90 percent of HIV AIDS patients get

drugs to prevent that death. And that's far far higher. Than other countries in Africa. I mean some of them very low. Some of them coming out. Even countries you've heard about like Uganda where treatment has been in place for a while. It's nowhere near that high so it is true that the government of Bus want to has been tremendously successful and mounting such programs in helping the people who are infected with HIV AIDS. And I think they deserve a lot of credit for that. I mean that's not what we're doing as research is that something the government made a decision to do. And I think that's very important. Yes when in fact we mentioned earlier on that we just started this new project in maturity to see if we can use some of these lessons to try to prevent transmission between

adults. And in that situation it we've been talking about with started it recently but we've been talking about it for about two years and about a year and a half ago so Chief Keef elec a fellow who is the tribal leader for that district of maturity in it if a friend of unities when he was inaugurated as tribal leader and dressed up in a leopard skin and all this sort of stuff and gave his speech. He said that one of his goals was to start a new research project with all of it on prevention of HIV AIDS infection. So there's a lot of encouragement there's a progressive attitude now. The other thing you have to remember though is that with the successful treatment of the in sick people so they don't die. You're increasing

the total number of people who are HIV infected. Even if you significantly decrease the rate of new infections because if you have cut by 75 or 80 percent the death rate and you have been cut by 75 or 80 percent. The new infection rate if you've only cut that by 50 percent you increase the total number of people infected because those infected live longer. So the challenge then becomes how do you prevent these numbers to people who are looking at the total fraction of your population is HIV infected in Seiji plus one or is still very high the 25 percent where is the progress. Progress is in the healthy people and a significant drop in incidence in new infections. But it's going to be a long long time before there's a significant drop in problems of the total number of people infected.

Change is a result of my involvement with. I mean the interesting thing is that I've been involved with have as long as I've been a judge. Actually as I remember. Yeah I remember the first staff member you sent to Botswana. You know I met and since then I've always been interested in the work of you know and I've seen you know the tremendous progress that has been made because of that collaboration. So has it changed me. I mean this epidemic has to change you. I mean has it changed the way in which you know that it's made me more likely to get into your business. Even though I have no you know normally you think oh you know he looks Arab but that's not you know what. Why do I have to go and ask this gentleman what's wrong with you. But one thing about the epidemic you know made me change me in terms of being not reluctant to actually get into what

is business and to say look I think you look at you and I think you know you want to do something about it. And even if they're reluctant to talk. And also what I've learned is that people who are in fact a one to talk because they feel that there's so much silence so much dancing around them you know that if you just ask that question have you been tested this relief that somebody is naming the problem. So yeah. It certainly has changed my perspective on how to do research in which research to do. When I was initially trained as a viral interest than and in years past it seemed on totally satisfying and indeed often the most challenging. If you could just unravel the code of a given virus and how it replicated or

grew. As time went on and I swore the agony of disease I decided that others could do that I had been and it was even more important to try to find which interventions might be useful to prevent infection like vaccines. And I have spent a lot of time still spent a little time on that scene research and then is vaccine research was a little less rewarding than many of us had hoped I decided that we needed something sooner. And all these people were dying and he needed to do research on something that would make a difference sooner than 10 to 20 years from now. So I found myself doing more and more research related to it. Both treatment and prevention of infection using drugs. And I suppose I could say that that's one of the ways it

has changed my outlook on which research seems most important to do. The other way of looking at it is you know I've been in research for a long time and at my age if you're in a field where you know the result isn't going to come for 20 30 years it's it's a little less exciting if you're not going to be around one in 20 or 30 years to see it so. I may be around to see it but you get the point I think. Gendered HIV AIDS and in terms of. I guess in so many so many different ways America think first of all even earlier on a lot of the education you know seem to be targeted women and seem to be reaching women more than reaching men and also people who seem to be testing.

You know seems to be there are more women than men testing other reasons of course is that women take children. Women become pregnant and therefore they get caught. You know you know within the health care system and therefore they have greater access or greater contact you know with a health care system that men you know and they take shouldn't babies and children to hospitals or health clinics. So the continue to have more you know contact with the health care system as a result to become really the fest you know frontal in terms of work and then of course the mother to child transmission. You know I know there are discussions a lot of discussion that we should not be about Mother and Child Transmission the parent and child you know so the question was how do we include you know how do we make sure that we don't focus only on women and you know the greater society or even the partners. But I think with this opt out program you find that now that imbalance is beginning to shift. You know that almost is not the focus not

only on women and the respondents are not only women but there's no doubt that they did that I mean you know from all kinds of respects and just in terms of this is a subset susceptibility to being you know in fact it's between men and women for example you know and you know how so that there are so many Americans so many issues and a lot of work has been done recently of trying to get men involved and I think now there's even like a male sector on HIV AIDS you know there's a lot of what's better with I think the American Embassy in which one has worked a lot trying to sport and target boys and men you know. You know around education should make them active participants in the fun and the fight against HIV AIDS and also in sending out messages. So there really has been a realisation that we need different strategies if you're going to reach you know to reach both genders and also if I want to reach you know partners

and the recent messages also it's a really about partnership about relationships so you see a lot of messages either on television on billboards about partners you know and how as partners you know you have to deal with this problem. And there's a very great one where this is a great skit on television every evening. You know where her husband wife she's reading this little pamphlet about HIV AIDS. He comes in the room so she pulls and sits on it and then the following morning she goes to test and is leaving the testing room. He's leaving you know another testing room in a shop to see each other that you know because they didn't discuss this. So really trying to say if you discussed it before you you know you don't have to meet there and be surprised that you know both of both of you actually concerned about this but this issue. So but I'm sure it's much more nuanced and I'm putting it. Thank you. I thank you.