April 15 - 20, 2001 April 15 - Leave Washington, DC April 16 - Arrive Entebbe/Kampala at 7:00 PM April 17 - Spent the day touring medical facilities and making patient rounds at various hospitals and facilities in Kampala. Jack Killen (Director, Division of AIDS, NIAID) was my traveling partner. Started the day off by meeting with Nelson K. Sewankambo (Dean, University of Makerere School of Medicine. Went off to the Mulago Hospital Antenatal Clinic escorted by Professor F. Mmiro, a charming and enthusiastic 50-ish OB-GYN doc and Laura Guay, a pediatrician. This was a most extraordinary experience. I witnessed and interacted with large numbers of Ugandan women who come to the clinic for antenatal care. If they request, they are screened for HIV infection and counseled. Most of them, although they come to the antenatal clinic, deliver at home unless there are complications such as twinning or toxemia. The percentage of HIV-positivity among them used to be >40 percent. Now it is approximately 20 percent. The physical nature of the clinic was that of open rooms connected to outside virandas. The clinic was packed. Many women looked healthy, but several clearly had HIV disease. Since no treatment is available, no one from among the clinic patients gets treated for HIV. If they can pay something, they get treatment for OIs and many get prophylactic Bactrim. Patients who can pay fully will get reasonable care. I had to hold back my tears. Next we went on to the Makerere University (MU)-Johns Hopkins University (JHU) Project that is heavily funded by NIAID. We were shown around by Laura Guay and Phillip Musoke Mudido, a Ugandan physician. Laura is extraordinary. She is an American woman who has been in Uganda for 13 years. She is single and has adopted (or at least supports) a few Ugandan children who are AIDS orphans. They showed me around their clinical research projects. Next went to the U.S. Embassy to meet with Ambassador Martin Brennan, a 40ish man who appeared extremely interested and knowledgeable about HIV in Uganda. I discussed with him the NIAID initiatives as well as my recent interactions with Secretary Thompson, the State Department, NSC, Domestic Policy Council, and the White House concerning the development and implementation of a White House and US Government policy and plan of action for treatment of HIV in Africa and AIDS care in Africa. At the meeting was Ms. Dawn Liberi, USAID Chief for Uganda and Jonathan Mermin, a CDC person assigned to the US Embassy. Excellent meeting. Extraordinary security related to the terrorist attack on the Nairobi Embassy last year. We could not even take cell phones into the ambassador's office. Next went on to the Joint Clinical Research Center (JCRC) escorted by Peter Mugenyi and Cissy Kityo. Like Nelson Sewankambo, Peter is clearly an important physician in Uganda and the JCRC does much clinical research on HIV/AIDS. It was unclear how patients get put on a protocol and are followed at JCRC versus getting admitted as a regular patient to Mulago Hospital. The JCRC is the source of many of the important clinical studies that have come out of Kampala. I was impressed by the sophisication of their operation. Many Africans and some expatriots (mostly Americans) work here and also at other facilities that I visited including the Rakai Project (see below). Most Staff (PH.Ds, MDs, MPHs and even technicians have spent some time learning techniques and theory in the USA. Next went on to make Ward Rounds in the Department of Medicine at Mulago Hospital with Roy Mugerwa and Harriet Mayanja. This was clearly one of the defining moments of the trip for me and changed the way I think about the reality and potential of AIDS care and health care in general in Uganda and Africa since Uganda is considered one of the best. The wards were packed; people were lying in hallways, in open air virandas, and some were waiting with their families to gain admission. Most looked extremely ill and cachectic. Others were reasonable fit, but obviously acutely ill. I have rounded on thousands of patients over the years, but I have never seen anything like this except maybe when I made rounds at the King Edward Hospital at the University of Natal in Durban, South Africa in July, 2000. The difference here is that virtually no one gets treated specifically for their disease because of lack of anti-retrovirals and inability to pay even for drugs for OIs, TB and malaria. The rule (with few exceptions is that if the patients cannot pay something (even a dollar or 2), then they get no specific treatment. If they can pay, but are poor, they do "cost sharing" whereby they pay for part of what is to be done (i.e. chest x-ray, medications, etc.); however, it is severely limited by the amount which they cost share. If you are relatively wealthy and can pay, you go to a different ward and anything is possible diagnostically (chest x-ray, CT, blood work) and therapeutically (ARV, OI treatment, etc.). I saw patient after patient with HIV disease (mostly diagnosed not by serology since ELISA was too expensive - $4.00) and OIs. Overwhelmingly, patients had active TB. Here again, diagnosis was made clinically without chest x-ray and frequently without sputum smear and culture. Certainly, no CTs, bronchoscopies etc. I remember specifically a 17 year girl who had HIV disease (diagnosed by wasting and oral thrush) and likely cryptococcal meningitis (dx made clinically); they were considering doing an India ink stain on CSF, but decided not to since they could not do anything for her anyway since she could not afford amphotericin or fluconazole. The plan for the patient was hydration, analgesia and discharge home to her mother. It was tragic! Again, I could barely hold back tears. A similar case was that of a man in his 30s with obvious HIV disease and likely disseminated TB. Again, no specific therapy. It hit me like a truck! We were here in Uganda talking about the possibility of AIDS care now that drugs would likely be available at markedly reduced prices for Africa (see other discussion regarding tidal wave of movement to provide drugs). The problem that was clear to me was that even in the Mulago Hospital, which is one of the best in Africa there was not even basic health care! Imagine (see below) in the rural areas where there are hardly any doctors. In addition, what kind of training were the house staff getting when they could not definitively diagnose and certainly only rarely treat anyone? It became clear to me that we must use the enthusiasm about providing AIDS drugs to Africans to catalyze an effort to address fundamental health care in Africa. Even in the best of places (Uganda), there is hardly any health care infrastructure. April 18 - Visit to Rakai. Went with Jack Killen (who was with me throughout the entire trip). Leading the trip was Nelson Sewankambo, David Serwadda, T Lutalo, and F. Wabwire. This was one of the highlights of the trip. NIAID funds, in collaboration with Makerere University, Columbia University, and Johns Hopkins, a project in the Rakai district of Uganda (southwest of Kampala towards the border with Tanzania and Rwanda). The project has been going on for about 13 years and has been the source of many major papers including most of Tom Quinn's work on the role of STDs in HIV transmission, the relationship between viral load and transmission in discordant couples, and the protective effect of circumcision on transmission of HIV, among other studies. The site was inspiring, particularly the dedication of the staff who were mostly young Ugandan MDs, PH.Ds, technicians, nurses, etc. Also included among them were a few dedicated American expatriots who were either permanent or doing a fellowship (usually out of Hopkins). Of note, were Noah Kiwanuka, a Ugandan, born in Rakai, who went to medical school in Kampala and received his MPH from Hopkins. He was as good as they get and clearly was in command of the project. Also of note was Mary Meehan, an American wife, mother of 3, and a scientist who had been living with her journalist husband in Uganda and working at both the Uganda Virus Institute in Entebbe and the Rakai project. Of particular note on the trip was the level of available care in this district, which made Mulago look modern. I visited the Kalisizo hospital as well as a "subdistrict" antinatal and general medical clinic. There was almost no physical access. The best of the roads were almost impassable. There were large ruts and gigantic potholes in the unpaved road. Even with a four-wheel drive van, we barely made it since it was the rainy season and segments of the road were partially washed away. I will never forget the patients that I saw at Kalisizo and the rural clinic. There were benches full of patients waiting to be registered and hallways full of people waiting to be seen. Some patients were tended to by their families and were lying on the walkways and hallways or on the lawn without a bed. The pediatric ward had 2 children per bed. I was told that among their other diseases such as HIV and TB, the majority of the people in the wards, especially the children, had malaria. I say several children being transfused for malariainduced anemia. Now in 2001, the blood supply is well-screened. I can only imagine how many children got HIV-infected years ago before blood screening by these transfusions given for malaria. The faces of the patients were haunting. They were very quiet; no one made a sound, even the most ill. The Kalisizo hospital was staffed by 3 MDs whose training was medical school and 1 to 2 years of house staff training. These people did everything that did not absolutely require secondary and tertiary care. They performed deliveries, Caesarean sections, abdominal surgery (including bowel resection and anastomosis), fractures and other trauma as well as some types of chest surgery. With all due respect to their dedication, I thought at the time and still do now that despite the fact that on-the spot training is critical, these people could not be highly skilled surgeons since the only formal training that they had before they came to this place was a course in "surgical techniques" in medical school. This involved resecting bowels of sheep and other animals. There was no senior attending here supervising them. An important point about the visit was the extraordinary sophistication and dedication of the staff of the Rakai Project. They were amazingly organized in their system of following patients on study. They had a large number of counselors and field workers who went out into the field and tracked and counseled their patients. They went out by truck, motorcycle or on foot. They were mostly young Ugandans who were clearly dedicated. The success of the projects clearly depended on them. April 19 - The meeting entitled "AIDS Care in Africa" started today and I gave a brief opening address that I had carefully prepared with a written statement and slides that I had asked Greg Folkers to immediately post on the NIAID Website after the talk (please see copy of speech). Given the tidal wave of enthusiasm of getting antiretroviral drugs to Africans, there was in the global community immediately prior to this meeting a major dichotomy between those who were concerned that providing treatment would suck off resources from prevention and other activities and those who felt that we should proceed vigorously towards treating African with anti-retrovirals now that the prices of drugs were markedly decreased. It was clear to me from my reflections before the meeting (see my speech) and from my 2 days of observing first-hand the situation in Kampala that there needed to be a balance between treating Africans and accelerating the prevention measures. Also, and extremely important was the fact that as mentioned above, there was hardly any health care infrastructure in Uganda (which was better than most African countries). I stressed that we must act in a comprehensive manner by building sustainable health care and research infrastructure and by also considering other basic health care issues such as clean water; treatment and prophylaxis for malaria, TB; vaccinations against childhood diseases; treatment of diarrheal and acute respiratory diseases. My remarks were extremely well received and clearly the meeting organizers and participants were pleased that I was there and were looking to me for sober leadership in this difficult problem. An interesting event transpired at the morning session. Ugandan President Museveni was scheduled to speak immediately before my talk. He was late and so I gave my talk and chaired the session for about 1 1⁄2 hours. Just at the end of the question period, the President walked into the Ballroom of the Sheraton Hotel where the meeting was held. He was accompanied by his Chief Deputy Dr. Ruhakana Rugunda. Everyone including myself left the stage to make way for the President. I took a seat in the first row of the audience. Just then, Dr. Rugunda stepped down from the stage, grabbed my arm and led me to the stage saying that the President very much wanted me to sit down next to him during his speech. I was told that the President has long been an admirer of me and respected all that I had done for AIDS. The President greeted me with a handshake and began his speech by recognizing me to the audience. After his speech, Dr. Rugunda asked me to say some words. I extemporaneously spoke into the microphone directly to the President and told him that he was a model of African leadership and that he was highly respected in the USA and throughout the world for his sensitivity, insight and leadership in the fight against AIDS, and that we often refer to the "Uganda Model". I told him that when I returned to the USA part of my responsibility was to report back to my Minister of Health, Secretary of DHHS, Gov. Tommy Thompson and the staff of the White House. I said that I would tell them that what we have heard about President Museveni was true and that you were indeed an inspired leader and that we look forward to continuing to work with him. He was obviously very pleased with my remarks and gave me a hearty handshake and a very warm smile. At dinner that night, The Rockefeller Foundation hosted a working dinner for several of the participants to discuss the meeting. I was asked to serve as rappateur for my table and we had lively discussions about where we go next in this process.
May 5, 2001 - Important conference call with DHHS. On call was Art Lawrence (Acting ASH), Eric Goosby, Helene Gayle, ASH-Designate Claude Allen, Jeff Copeland, Terrell Halaska, Bill Steiger. We (Me, Jeff Copeland, Terrell Halaska, Bill Steiger) had been working for weeks on putting together a position paper for Secretary Thompson on the response to the challenge of AIDS in Africa. UN Secretary General Kofi Annan will come out with a proposal for a Global Trust Fund for AIDS in Africa in June at a Special Session of the UN General Assembly. The White House used our White paper as background to get out front on the issue and announce that the USA would contribute to the Global Trust Fund. We were told on the call that the Cabinet Council met with Pres. Bush. The Cabinet Council consisted of Secr. Thompson, Secretary Colin Powell, Carl Rove, OMB Director Mitch Daniels, Domestic Policy Council Margaret La Montagne, Pres. Counsel Rodriguez and members of VP Cheney's office. The decision was made for Pres. Bush to announce on May 9, 2001 that the USA would contribute in FY 2002 $200 million to the Trust Fund. However, of great relevance to me and NIH, there would be no new money. It would all be budgetary offsets. Of the $200 million, HHS would give $100 million, Dept. of State would give $60 million and $40 million would come from the existing AIDS trust fund. Of the $100 million from HHS $95 million would come from NIH as a transfer. $65 million would come from B & F, $25 million from NIAID, $5 million from NIH OD and $5 million from cyber security. Of considerable note is that Bill Steiger mentioned on the call that he was very "grateful for the generosity of Tony Fauci who has offered to provide the $25 million from his FY 2002 appropriation. Since NIAID will get a 14.2% increase, when you subtract the $25 million, this means we would still get a $260 million increase in our >$2 billion budget. It would not be taken out of the base, but would be a one time transfer.". The fact is that I had offered to help a few weeks earlier in my conversation with Terrell Halsaka. By "help" I was not referring to the Trust fund; I was referring to putting more research money into the AIDS effort in Africa. There was no way that I offered $25 million for the trust fund. However, I did not object over the phone since it was obviously a done deal and the President was going to announce it. It would look very bad if I objected. There was nothing that I could do but turn this "challenge" into an "opportunity". In the end, it really is the right thing to do since it shows leadership in an important cause and our base was not impacted. I will probably take some heat from our constituencies. However, who can cogently argue against my doing something for dying Africa babies? At the end of the day, I am not unhappy at the outcome since we need to get the ball rolling on the African AIDS issue and Tommy Thompson and J are leading the way.