9UNP0121SD_Peter Mugyenyi_WordPress

(applause)
 
- Thank you, Frank, for your generous and kind words. And ladies and gentlemen, thanks very much for coming to listen to me. Please if you can't understand anything that I'm saying, stop me. I'll try to go through this as fast as I can. It's an easy and relaxed talk. Not so much that I need telling you the story of AIDS. Basically, my topic is to talk about 25 years of AIDS in Africa. 

And those are some of the events that have taken place over the years. AIDS was first discovered or diagnosed around 1980 here in the United States, and events have taken place. What I would like you to see from this graph is the rise. The two lines all going up. The top is the numbers of people who have been infected with HIV in the world. And the bottom is the line of offense that have risen parallel to the numbers. And somewhere in the middle is the deaths, which have taken place all over the world. Now symptomatic AIDS was first diagnosed in Uganda at the same time as it was in the United States. That was early 1980s. And in Uganda, it was first seen in a place called Rakai, that is in the south western part of the country. 

And it has since devastated the country. I'd like to take you back to 2000, when I got a grant from Rockefeller Foundation to study the impact of HIV/AIDS in Africa. And I spent about a year going across the continent and studying the impact of AIDS. Our objectives in this study was to try and define the epidemic involvement, to measure the magnitude and impact of the epidemic, to find out of the current interventions that existed on the continent, especially the gaps, to document any successes, if any, and constraints. And also to determine country and regional priorities, and to determine some research priorities, as well. And, above all, to make recommendations. In brief, we found a continent totally devastated by AIDS and ignored by the world. And it was a very, very depressing findings. We found the rates ranging from a high of about 30%, downwards. At about the same time that was the picture in the world, Africa was the continent most affected by HIV AIDS; almost about 30 million people were living with AIDS. 

And the rest of the continent were not so badly affected. These are some of the micro details that we found. AIDS was a sexually transmitted disease in Africa, and it affected the heterosexuals. Only a small proportion got AIDS from blood transfusion. It was a disease of the youth. The young generation were the ones most affected by HIV/AIDS. And this is what was happening. Previously, just about in 1992, less than 15%, on or about 15% of the hospital beds were occupied by AIDS patients. And by the year 2000, more than half of the hospital beds were occupied by AIDS patients. And everything was on the rise. 

The epidemic was rising in both east and southern Africa and western Africa. In some western African countries, we had some low rates, but overall it was everything on the rise. I want to talk to you what happened in Uganda. By 1990s, Uganda had the highest rates of HIV/AIDS in the world. In fact, if you talked about Uganda, what would come to most people's mind was either AIDS or Idi Amin. 
(laughter)
 Now, from 1995, the rates in Uganda started coming down. And they came down until they reached about the current level of 6.4. And this was remarkable, because this was done without any other intervention other than education, communication and information to the populations. It made us study the epidemic a little bit more closely in other countries. 

And overall, I defined three phases of the epidemic, which I give some special identifications. The first phase, which I have seen as a pattern in virtually all countries in Sub-Saharan Africa, is what I call an epidemic out of control. It first goes up, because it normally happens insidiously. Nobody knows they have it until they find it on the rise. And then the second phase is what I called a declining phase. That is an epidemic under effective control. And then we get out a bottoming effect. Now, that is demonstrating a second phase of the epidemic. And currently, a lot of African countries are in this phase, because most interventions are taking place bringing the epidemic down, the risks of the epidemic. And the country that, for a long time has been in a bottoming out phase is Senegal, because it took effective measures. 

And the epidemic is in that phase. But what happens as the epidemic becomes under control? All of those people who got infected turn up with AIDS. So the patients tend to go up, while the epidemic itself is in the declining phase. Now, it's not only epidemic that comes down, I mean that the AIDS patients come up, it is many complications of AIDS that come up. You get rising opportunistic infections, rising deaths and rising numbers of offense. In our findings, we looked at the social economic impact and we found it was devastating. Take an example of South Africa. Without interventions, it was estimated suffer a decline in growth and production of about 20% and loss of about $22 billion. We found care and support was greatly deficient. 

But most remarkably, there was absence, almost total absence of antiretroviral drugs. There were other deficiencies in human resources and epidemic monitoring. But by far the biggest concern was a lack of antiretroviral drugs. We found that all of the donor activities were concentrated on prevention. But the prevention itself was grossly deficient. We also learned that it was possible to actually control the epidemic. If you took measures that were robust in prevention topped by treatment, you could actually bring the African runaway epidemic under control. But everywhere we went there was desperate need for treatment. As I said earlier on, all the donors chose to handle only the easy options. For example, in prevention, they didn't tackle expensive diseases like toxoplasmosis, which is an infection that affects mainly the brain, or cryptococcal meningitis, because those are very expensive. 

They concentrated on septrin prophylaxis. It didn't cost much, and it controlled, it helped to reduce only a few diseases. And it was generally said at the time, that treatment was impossible in Africa. As for prevention of mother-to-child, it was only restricted to developing immunotherapy. Most importantly, as far as prevention was concerned, we found some of the best practices that had helped to reduce the Ugandan epidemic to a controllable level. And this was committed leadership and multi-sectorial approach. By multi-sectorial approach, we mean all the departments of government, in education, in agricultural, in all kind of sectors were involved to some extent in AIDS control. And then there was some investment in capacity building, which was taking place but this was sufficient, and then networking. So the summary of what we found in our research was an epidemic in South Africa, an estimated 500 people were dying on a daily basis. In Kenya, Uganda, Tanzania each country was losing at least 200 people every day. 

Literally, millions of Africans were dying. And what was regrettable, almost all of these deaths were preventable. This was a remarkable finding. All the African countries from 1955, were achieving some growth in healthcare and treatment. And the health facilities had grown steadily. And we're realizing a continuing rise in the life expectancy. Now from 1985, life expectancy plummeted. And of particular interest is Zambia, which was projected to have a life expectancy of only 30 years. And then, to put it into perspective, life expectancy in Japan is about 81 years. So this is the kind of picture I wanted to paint for you of what has happened in Africa over the years. 

Now, all of that red line is showing a period where most people in Africa died of AIDS. And this is the period when effective treatment in form of antiretroviral drugs was available. So obviously there was a moral imperative to make AIDS treatment accessible to Africa. And in some cultures, there was growing outrage that so many people were allowed to die, when treatment that could stop the carnage was available and easy to administer. So while the world was not so affected, this is the grim picture of high prevalence of HIV on the continent, most of it in Southern Africa. And after that, other things were taking place. The African continent is a boiling pot of so many of the HIV virus types. All the types, all ten of them, can be found on the continent. And what I want to show on this is the march of the most aggressive type, type C. It has taken over the whole Southern Africa and is marching northward. 

It is not so vicious in affectivity. But patients don't die soon, and, as a result, it has time to infect more people. And that's why it is successful in taking over most parts of the world. Now, I'd like to talk to you about the campaign that I've been involved in to make AIDS treatment in Africa. I think I have made a case of how desperately needed treatment was, because it was the only one that would put a stop to the carnage. The talk around the year 2000, was that Africa cannot use antiretroviral drugs. There were so many statements, which I don't want to pronounce, trying to emphasize that it was futile to try and use antiretroviral drugs in Africa. However, there were some concerns. And some of these concerns were quite general. They related to drug affordability. 

It was extremely expensive and unaffordable, by any of the African continent. The monitoring tests were also equally expensive. Care providers were not so many. Logistics for drugs, storage and distribution was a challenge. And compliance for use of these were also a challenge. And then, most of the Africans are not found in cities. They actually live in rural areas, so treatment needed to be taken to the districts, where facilities were even bleaker than in towns. And, of course, the widespread poverty among the communities and systems that needed to be put in place. All of these were some of the challenges. But our view was that all of these could be overcome. 

My center, the Joint Clinical Research Center, which started in 1991, had some experience in use of antiretroviral drugs. And this experience had proved to us that we could use antiretroviral, not only in Uganda, but in any part of Africa, if only of the costs of the drugs and some of those challenges could be addressed. And this is the effect that we saw with regard to the cost of the drugs. The decline in the cost of the drugs corresponded very closely with the increase in the numbers of people accessing treatment in the center. So the number one constraint, the smaller graph is showing the increase in a number which corresponds with decrease in the cost of various drugs. So this was obviously the main constraint that we're meeting in the country. So our job was to overcome the constraints associated with the HIV treatment. What we did at my center, we started importing the drugs. The rich could access them. Meanwhile, we would charge them overheads, which would go to helping the poor patients. 

We ignored the red herrings, infrastructure deficiencies and all of that stuff, and concentrated on finding solutions around those problems, because it was imperative that at any cost we had to provide life-saving treatment. And we introduced what we called cost recovery system, whereby the rich would pay and then give something to the poor. And we kept increasing the numbers. The is a busy slide, but it is quite simple to understand. This is what we called the network model that we developed, tested out and found it worked, and could apply in any country. Basically, the principal of it is that you cannot have all the facilities all at once. So if you have facilities in the capital city, you can use a referral system so that only those who need the high-tech kind of facilities come to the city. And others can be managed in their respective areas. So we had the levels of healthcare defined. We had where they were positioned. 

We defined what kind of infrastructure was needed. The personnel that would be there, we are talking about minimal personnel, and what kind of facilities that would be available. And we put it in action. And by 1998, we had established three centers that worked very well. By 2001, we had over ten centers. And we are ready scale up, but we are constrained by funds. Now in the year 2002, we presented, I was called to the U.S. Congress to present the network model. There was a group of policymakers of U.S. government. They were exploring how AIDS treatment could work in Africa and many other poor societies. The majority opinion was that it was impossible to use this treatment in Africa. 

So we presented the network model and demonstrated that it would work, and also showed them physically how we are running it. And at the end of the day, this convinced the policymakers that it was worthwhile considering AIDS treatment support for Africa. And in January 2003, President Bush announced $15 billion for aid to Africa and some Caribbean countries for treatment of HIV in those countries. My center got the grant in November 2003. And when we got the grant, we hit the ground running. By May, the president, I think, had woken up to find that actually there was a emergency in Africa but, in fact, the emergency had been there for more than ten years. And he became an avid fighter for AIDS treatment in Africa. So what will follow is a description of the program that we set up to take AIDS treatment to the people of Uganda through my center. We called it Time Table for Regional Expansion of Antiretroviral Therapy. Under this program, we have successfully established AIDS treatment centers in all regions of the country, and we have established a network of public-private centers, including faith-based organizations. 

And we have a nucleus of expertise to build capacity for quality and sustainable program. So we have been fanning everywhere. We know the science of antiretroviral therapy. We know how to monitor the drugs, very well drugs treatment. We know how to change treatment, and all of the scientific needs for modern management of antiretroviral therapy. But we realized that this was not going to make it work. It took much more than that. One of our greatest needs was to get a big number of our people trained. And this is where Wisconsin has come in very strongly. We had to train them in all kinds of ways, on the premises, on the job, in their various areas. 

And Dr. Graziano and his team have been going to all parts of the countries doing training with us. We decided to train while we're working on treatment at the same time. People who'd get treatment would immediately be sent in the field to treat, because it was critical. Start of treatment was equal to saving lives. We had a drill which we followed. We didn't care what we found there, but whichever infrastructure we found, we used it. We had low cost renovations and we had improvisations where necessary. And I'll show you some examples. But all the time, we are working toward sustainability by addressing infrastructure, by addressing human resource and discussing with donors for longer time. 

Because this is a donation for a lifetime disease. It's not going to go away next year or within next ten years. When we open a center up country, it is time of great celebration. We actually do very big parades within towns. It's grand. We get students putting up spectacular concerts. We get very big marches. And by the time we leave town everybody knows we have been in town. 
(laughter)
 And the question they ask themselves, "What are these guys doing here?" 

They look around, they find religious leaders, politicians, villagers, everybody talking about AIDS and that helps to decrease stigma. You can do as much as you like, but nothing decreases stigma like the way we open our centers with such a bang and getting people participating and organized. And this has served us very well. We get on tracks and start driving around the villages. Those who remained in the villages, making as much noise and making a nuisance of ourselves as much as we can. And by the end of the day, everybody gets to know that a clinic to treat AIDS has been opened. What happened the next day, we are swamped. People come. And we always make sure that we are ready not to disappoint them. In some places, when you go over there and you find that the ambulance that is the only one available, you just don't say, "It can't be done." 

Patients can still be brought to hospital, to the clinics, and you can actually treat them. If your treatment is good, it doesn't matter how they came in. In fact, this is an example of one of the places that we went to and found they had absolutely no infrastructure. And it has since become one of our most successful centers. When we found they had no infrastructure, but they had so many patients, we just put up a tent. And when we put up a tent, by next week, we are doing health education in it. It became one of the busiest spots. We had a small room enclosed, where we did counseling, and another one where we did HIV testing, and another one where we treated those who needed treatment. And we started operating. Meanwhile, we started building. 

We don't have money to build such complex structures like you have here. And even some of us occasionally volunteer some labor, and right now, this is what we have in that place. We have a neat, small laboratory which works very well. And we have a clean clinic where patients are treated. But at no time while we were getting these facilities, did we stop for these facilities to be established. We continued treating people. And when the facility came, it made it easier for our staff and for some of the patients. But at least lives were saved. When our program started, we started by addressing the poorest of the poor. We started with orphans and vulnerable children, until we got more funds. 

Then we went to look after orphan caretakers. And when we got funds we progressively addressed more and more of the poor. I'm very glad to say that before I came here we looked in the kitty, and our program is able to give everybody who comes to our centers treatment. So this is what has happened in our place. From six centers, which grew to ten, these were six big centers, but we're taking care of about 12 sub-satellites. We have grown to 50 centers countrywide, with 25 outreaches. So we have got 75 places where we give treatment as Joint Clinical Research Center. This is not government or other organization. This is just our center, which I head. We have numbers accessing antiretroviral therapy increased from 10,000 in 2004 to 47,000. 

Actually, the latest data is over 50,000. And most of them are females in our country. It's a heterosexual disease which effects mainly females. And we are taking care of over 39 districts in Uganda. So we have had, in addition, a big number in care. Because those who go on antiretroviral therapy-- For one patient who goes on antiretroviral therapy, there is two to three others who don't need treatment as yet, but whom we continue to look after. So we have over 65,000 in continuous care in some of our centers. So our treatment program have been increasing almost in a linear manner as we extend treatments to various parts of the country. And one of the most pleasing things to me, because my background is in pediatrics, is that we now have the capacity to treat children. And the children are coming up, and right from the beginning, all children access treatment free all over. 

More recently, we have introduced advanced tests like DNA PCR for early childhood diagnosis of HIV. With the Clinton Foundation, we've been able now to get some pediatric dosages of all of these, which you know are quite difficult to get. So this is the network of the centers that I run. Which, as I said, the main one is about 50. The outreach is about 25. And in total, we are looking at 75 centers countrywide. Now, what we did in our program was to divide the country in two regions. And in each of the region, we established a center of excellence. This center of excellence provided tests that could not quickly be established in all of the centers where we give treatment. What's happening in those places that we are able to do advanced tests like CD4s, viraloids, both PCR and DNA, full chemistries and others, and samples are brought by public transport from a company that we hired. 

And in this way, each area is able to provide some diagnostic treatment for all of the centers by referral system. And those centers, we also use the same method that I've already explained. We found, usually no infrastructure. And we built these various infrastructures that you can see over there. And these are serving as the regional centers of excellence, and also as training centers. In fact, this is where within a few weeks, Dr. Graziano and his team will be conducting a course. This is in the east, near Kenya border, previously they conducted courses in the west, southwest in Paroa, which is a teaching hospital. And they have also been in extreme south at Congo border to teach in this place. People they teach quickly go to provide antiretroviral therapy. 

And I think they have also been foot patrol, as well. So this is the collaboration in the different parts of the country, where we are working with University of Wisconsin providing care and treatment. So these are the critical areas which we have concentrated on, and we are developing so that together we get a quality program. Training. We have got laboratories, because laboratories define the quality of the services that you give. But they were, as I have explained, not necessary for saving lives initially. We could use classifications. We could use CDC classification to determine the disease severity and start treatment based on those criteria. All we needed was an HIV test to confirm that patients were indeed infected with HIV. And this is important in our area, where we've got many tropical diseases. 

But subsequently, we have come to a stage where quality of the program is very, very important. And of course, treatment success is measured by good ideas. And to have good ideas you have to get good logistics. so that drugs reach people where they are. And this, we have been setting up. And finally, sustainability is very important, because you cannot have a program that relies on donors perpetually. You must have a strategy that builds capacity within the country for eventual take over of the program. And we have been giving this-- We have been giving this some attention. Lastly, we gathered a lot of experience, because we started early in Uganda. And therefore, we have been sharing our experience with other parts of Africa. 

The Joint Clinical Research Center is now serving as the World Health Organization knowledge hub for East and Central Africa. We share those experiences and skills in scaling up treatment with many other various countries. And we have got a secretariat and a team, which is going around the continent, exchanging knowledge with other colleagues where they have not advanced that much. We also host two other programs. One is called African Dialog on AIDS. And this one is where we bring African experts to share African experience in the care and treatment of AIDS. And at the Joint Clinical Research Center, we have reached many countries. And we were also lucky to get a grant from Doris Duke to provide African young scientists to carry out research on HIV/AIDS or TB, and be able to develop skills while they are actually doing research that would contribute towards the care of patients in their own countries, so that in the future they are able to compete for the likes of NIH grants. And in this, we have been highly successful, because at least five of our members have already successfully applied for international grants to carry out various research. So with that, I'd like to thank you for listening to me and to invite any questions that you might have about the outline of our program that we have carried out in our country to try and reverse the carnage of AIDS. 

I'd like to say that in 2000, at least a relative or a friend would die every day. With proper program and this treatment that has happened, you can now spend a couple of months without hearing of somebody dying of HIV/AIDS. And to us, this has been something tremendous, reversing human horror and suffering to a current position of hope. I don't like anybody to believe that we are on top of the situation. There is much more to be done. We need much more help. Lots of people need to be trained. And we need also to shift some of the tasks, because we cannot have physicians being solely responsible for treatment of HIV/AIDS, because we are going to be having about 20 million Africans on antiretroviral therapy within the next five to ten years. And when you have such massive numbers, you have got to get people like medical assistants. We can get or colleagues, the nurses, to do some of the work, to be able to prescribe and treat patients, and get the community more involved in care and treatment of AIDS. 

Thank you very much. 
(applause)