AIDS: The Enzi Report

U.S. Sen. Mike Enzi, R-Wyo. accompanied Majority Leader Bill Frist, R-Tenn., Lamar Alexander, R-Tenn., Norm Coleman, R-Minn., Mike DeWine, R-Ohio and John Warner, R-Va. to Africa in August to meet with officials to discuss ways to combat HIV/AIDS on the continent.

Throughout the trip, the Congressional Delegation met with government and public health officials, doctors, and patients and their families, and visited numerous HIV/AIDS clinics, and testing and treatment facilities. Some of these facilities included the Chris Hani Baragwanath Hospital in Soweto, South Africa; the Salvation Army HIV orphanage in Soweto, South Africa; the Bernard Noordkamp Catholic AIDS Action Center in Windhoek, Namibia; and the St. Mary's Hospital Prevention of Mother to Child Transmission and VCT facility in Windhoek, Namibia.

The purpose of the trip was to discuss methods of combating HIV/AIDS and hear firsthand how the United States can best assist in these efforts.

As a member of the Senate Health, Education, Labor and Pensions Committee, the Senate Foreign Relations Committee and Global AIDS working group, Enzi helped lead the debate and usher through H.R. 1298, the Global AIDS bill, which was signed into law by President Bush in May. The bipartisan bill establishes a $15 billion spending framework to fight the disease around the globe over the next five years.

Enzi's trip to Africa helped to educate him beyond the books, memos and briefings and improved his ability to serve as a steward of valuable American resources being used in the fight against AIDS. He kept a journal throughout the trip in order to share his experience, observations and ideas with his constituents, peers and all of those who care to learn more about the plight of their neighbor.

Enzi's report follows.

AIDS in Africa is a challenge for the world
A report by U.S. Sen. Mike Enzi

The Monday, Sept. 1, 2003 Washington Post has a front page article about Andrew Barr, a retired real estate broker, who now makes money to give away. "There's nothing wrong with having money, " he said. "But once you make money, you should do something with it, not just sit there and let it pile up."

That's the challenge all of us face. It doesn't matter how much you make - it does matter what you do with what you make!
My work on the HIV/AIDS problem and especially my trip to Africa have brought this thought home. HIV/AIDS presents a whole world of challenges to the whole world.

Stark realities

Tuesday Aug 19, 2003 Senate Majority Leader and physician, Bill Frist led us on a trip specifically to look at the African HIV/AIDS problem and solutions. During our roughly ten days of travel we would visit some countries where the disease has already essentially eliminated teenagers, countries where 150,000 less students will be in school because of their deaths.
These are countries where there are also many cases of tuberculosis and malaria, but even then many who die from tuberculosis and malaria do so because their immune system has been severely weakened by HIV/AIDS. Unfortunately, perhaps, a person in some cases can be HIV positive for several years without having AIDS. When they finally get AIDS they are often able to work for some time, and with treatment live a fairly normal life for several years. I say unfortunately only because those diseases that are readily visible get treatment quicker. The visibility helps in prevention of transmission.
When it is invisible and a stigma is attached, no one talks about prevention or treatment.

Home away from home

One of the stops during our 17-hour flight from Andrews Air Force Base to Johannesburg, South Africa was Ascension Island. The island is British, but the airstrip is controlled by the US Air Force. Of the two active duty stationed there, one, Lt. Col., Landsbury, is from Wyoming. His wife is staying in Cheyenne. His mom and dad live in Rock Springs.
South Africa

We flew to Johannesburg then traveled by bus to Pretoria for our first meeting. Tight scheduling shortened all our in-country briefings by the U.S. embassy people. Since we were concentrating on a single issue shorter briefings worked fine.

The South African trade representative when asked about AIDS said South Africa was doing fine. He said the money the U.S. was sending should go to those countries who are having a problem. As you will see later in my report, I believe some of the officials in South Africa are refusing to face facts.

The second day we traveled to the world's largest hospital, the Chris Hani Baragwanath Hospital in Soweto. The officials there are not sure how large a population they serve as there is no registration of the people in the hovels. They are sure though that it's more than a million people and probably over 3 million. The 3,000 bed hospital consists of several barracks with cloth dividers between beds when privacy is needed. The poorest people in developed nations would not likely settle for these facilities. The hospital is able to accept 105 new patients a day. We asked what happens when they reach 105.
The officials said they have to send them to other hospitals. We asked where those hospitals would be. There are none within 20 kilometers - and all the patients arrive on foot.

We were able to meet and talk with a woman being treated for AIDS. She had been laid off her job for having AIDS. After getting the treatment she gained weight and was able to go back to work. People welcomed her back saying they were glad to see she didn't have AIDS. She didn't tell them what had happened because seven people are relying on her salary. Only 20 people in Soweto were under active treatment for the disease. To receive treatment the patient must sign an agreement that says they understand that treatment will only be available for two years even though without it the patient will die.
This is rationing of healthcare to the extreme.

Next we traveled to a Salvation Army AIDS orphanage and home based care center. The people there are well known for the education they offer. Even though the country stigmatizes anyone with AIDS, they have a waiting list of non HIV kids from the area that want to go to school there - a tribute to their quality of education. We visited the living quarters for the two to five-year-olds. A circular building holds 32 beds. Of the 32 children living there, 12 are being treated for AIDS. I asked at what point the others would start to need and be treated. The answer was somewhat evasive. As we were moving to another building the orphanage doctor told me that was all the medicines they could get even though all 32 children need to be treated or their life expectancy is very short. In other words, they had to pick who was going to die first. I was very upset about this drastic health care rationing. A member of our party mentioned to me the early days of heart operations when the cost was too high to treat people until the techniques and the volume had increased to the point that the price per patient came down. I still have a vision of 20 empty beds. At the home care center we heard what the conditions are like the nurses encounter as they visit the hovels and counsel families particularly in the last days.

After visiting the orphanage, we traveled several kilometers north to the Anglo American Gold Mine hospital in Carltonville. We saw the kind of care provided to workers for accidents, regular health care and HIV/AIDS. It was obvious that the men have a stigma for AIDS as well and were afraid others would find out and what that would do to them. Mining areas have high incidence of HIV. Often the workers come from remote areas. Their families do not come with them. The family has to keep the family land staked out or they lose it. The men can only make about two trips a year home. It is accepted by the people in that culture for urges to be satisfied by commercial sex workers. Acceptance of the occupation is shown by calling them workers instead of prostitutes. The family maintaining the "homestead" have to work too. The working environment is very different from what we think of in the U.S. There are no sexual harassment laws that are enforced there and sometimes workers have to endure these types of hardships in order to keep a job or be promoted.
These situations can also lead to infections.

As we were leaving we viewed the USAID-provided health vans that travel the country providing check ups and health information. A nurse drives the van and then provides the service in remote towns. Sometimes they are accompanied by a volunteer. The volunteers are usually commercial sex workers. It's a chance to educate the sex workers on transmission of sexual diseases. The vans to date have not been testing for HIV. The health workers have been afraid the vans would become know as AIDS vans and the stigma would prohibit anyone from using them. The nurses told me the vans have been in existence long enough now and have the trust of the people enough that they could include HIV testing and people would still come. They are still limited by the road system that doesn't go to many remote areas.

At a reception held that evening I met a Peace Corps nurse who established health lectures that trained the interpreters as lecturers. She saw a need to educate, particularly on sexually transmitted diseases. She understands the AIDS stigma. She organized a series of eight lectures that start with handling headaches, later to backaches; eventually getting to tuberculosis and malaria in the seventh lecture. The eighth lecture, after she has gotten the confidence of the people, concerns HIV and AIDS. Because of languages and dialects, the interpreters are essential. The advantage is that as the lecturers followed her from village to village doing the same series of lectures, they learned the lectures and can carry on even when she is gone.
She made a very astute observation of a need and filled it.

The South African Health Minister made some comments at a reception for the U.S. delegation. She was educated in Moscow during the cold war. She seemed to demonstrate this by including little jibes at the U.S. in her speech. But her most telling comment was an answer to a question from Dr. Joseph O'Neill, Director of AIDS Policy for the White House, who wanted to know what message she would like us to take back to the U.S. She said, "Tell them we have it under control." She did mention that Cuba is sending 100 doctors.

On Friday, August 22 we spent much of the day in the air flying to Cape Town. After we arrived we took the ferry to Robben Island where Nelson Mandella was incarcerated. Our tour of the prison was led by Ahmed Kathraba who was arrested, tried and imprisoned with Mr. Mandella. He proofread the material Mr. Mandella wrote and smuggled out of the prison. Mr. Kathraba has had letters he wrote from prison published. He autographed copies of the book of letters for us.
He has appreciation for the multilateral country embargo of South Africa movement started by the University of Michigan and then the U.S.

At a different point on the trip, the delegation was also able to meet with Graca Machel who used to be the first lady of Mozambique. She is married to Nelson Mandella. She has a foundation that focuses on women's and children's issues and profiles the HIV/AIDS awareness. She suggested that she is trying to find a way to use the African emphasis on lineage to get the fathers involved in solving the problem. If work isn't done they may well be the last of their bloodline. I think she has a key. She was one of the most enthusiastic and well informed people we met on the trip - a real leader and advocate.

On Saturday we had a breakfast meeting with an official from the Pediatric AIDS Foundation and the director of the Provincial Health Program in Cape Town. I learned that they base patient selection not on need, but rather on probable effectiveness. They explained that a cost can't realistically be put on a human life, but with the limited resources, patients beyond recovery are not treated so that those who can be are. An effective immune system has antibodies of 1000. In the U.S. we begin treatment of AIDS at a count reduced to about 300. Overseas they wait until the count goes down to 200.
Mozambique

We flew from one coast of Africa to the other - from the Atlantic to the Indian Ocean on Saturday, Aug. 23.

The trip to the hotel in Maputo from the airport passed hovels they considered to be middle class housing. It was an introduction to the poverty we would see.

We had a country briefing by the embassy staff. It was cut short so we could meet with the President.

We met with President Chissano on the lawn of his residence. We covered the economy and AIDS. This is the poorest of the countries we visited and the poorest country I have ever been in. Average income per family is around $220 a year.

After the meeting we had a tour of the town ending at a shanty town craft store.

That evening the U.S. embassy held a reception where we met other leaders of the country.

I attended church on Sunday at Living Waters in Tshalala. When we arrived the choir was out front singing a welcome. The singing was magnificent. The sermon was on a single verse, Galatians 6:2 "Bear ye one another's burdens and so fulfill Christ's law." They did a shortened version of the worship service to accommodate our schedule. When we left they continued for another couple of hours. When they do the offering they sing while people go to the front and put their offering in the basket. It seemed like the parable of the widow's mite as most people were able to put in a small coin. I remember one young man, probably all of five years old who had a lot of problems getting all of that one small coin - more money than he was usually entrusted with - out of his pocket.

Also in Mozambique we visited a "Lifewater International" site and training center (training to dig wells). We visited where a well had been dug. The pump was manual. I watched two boys about Jr. High age use a most prized possession - a flatbed wagon with balloon tires like might be on a small camper. The bed was able to hold ten, five-gallon jugs. The boys push the cart about six miles each direction and that is their daily task. Getting water takes precedence over schooling. They stop pumping as the can gets full so no water is lost changing cans. The funnel is a gallon milk jug with the bottom cut out.
The funnel stays with the pump. The funnel was not clean. While the boys were pumping, a person would come up and use the funnel to drink. Then they would put the funnel back into the jug. This is untreated water.

The wells are dug as they can afford it - costs about $6,000 per well to drill, case, cement and install a pump. The drilling rig only works in sandy soil. The rig runs on a lawnmower motor. There is a separate mud pump. The first drilling to 30 meters (about 90 feet) is done with a 3 ½ inch bit and then redrilled to ream it out to 5 ½ inches. It takes about a week to do a well. The whole drilling outfit can be thrown into the back of a pickup. The drilling "rig" costs $12,000 and shipping adds another $2,000. The rig will drill about 15 wells before wearing out. They drill to the second water formation because the first is usually polluted from the village latrines. Latrines may be hand-dug to 30 feet.

Water is needed to take most medications. The number one killer of children is bad water. Diarrhea is the biggest killer of kids. The wells have no chlorination or other treatment. The hope is to get a good well within five miles of everyone. That should take about 1,000 wells in this one country. I believe at least part of the money sent to help with the AIDS epidemic should be allowed to be used for basic water projects. Many groups of houses only have ponds to draw their water from. The ponds are visited by animals and animal feces is often floating in them.

We visited a farm near the dam. They raise fruit. This farm is one of the country experiments to return land and businesses to the private sector. The people who bought the farm, however, can't fire any of the employees under condition of the purchase. The country requires each person to be paid $1 per working day. The owners instituted incentive pay so almost everyone who works for them makes twice the required amount or about $50 a month.

We visited the Namaacha testing center and again we heard some very moving African music. On the tour of the center we were introduced to rapid testing kits. People willing to be tested can find out their results while they are still at the clinic rather than waiting for a lab to process the information. This is helpful because it's often hard for the people to justify to those around them a second trip to the center. Clinics are located along the major routes since AIDS seems to migrate that same way.

We drove to a "village" passing the Swaziland border crossing where we could see into the next country. We had a meeting with traditional healers. These, some would term "medicine men". Traditional healers, who are mostly women, play an important role in the lives of everyone outside the cities. There is a traditional healer for most villages or about one per 200 people. They advise on much besides healing. They are even economic and cultural advisers. Just about everyone in the village consults with them and believes in them. They have been given education and insight into AIDS. One stark message they shared is that they know now not to use the same knife on two people.

They do use bleeding. Even razor blades are very valuable and were reused. Now they are brought by the patient and are supposed to be destroyed after one use. I believe the traditional healers are the people who have to make a difference in the back country since literacy is almost non-existent and there are no radio or television stations - partly because of the number of languages and dialects - but mostly because of no electricity or battery power.

The village had a young men's choir that sang about preventing AIDS transmission. The head of our security detail gave us a soccer ball to give to the young men. They were really excited and went off to play with it. I followed after them and they let me join in. On the last pass before we had to go a ball came in a position that I was able to do a header. I think the boys were impressed. It was a highlight for me.

I believe that transportation costs in Mozambique would be cheaper if migration routes are re-established. This would require peace in the neighboring countries. Transportation costs are most of the costs of their products. They also recognize that truckers carry the disease along transportation corridors. HIV information is given to drivers at border crossings.
Botswana

On Monday, Aug. 25 we flew to the capital of Botswana, Gaberone. It was apparent that this was a much more affluent country than the one we had just visited. We had a short country briefing from U.S. embassy personnel and an unexpected opportunity to speak with the Vice-President and probable next President of Botswana. We then had a separate meeting with the new Minister of Health and her staff.

Later in the day we toured a hospital in a new $7 million building. The facility's biggest source of funds is U.S. National Institute of Health. Doctors from Harvard and Baylor were in attendance. We didn't see any patients being treated or in residence.

Next we went next door to a prefab metal building clinic. The operators of that clinic were treating about 200 patients a day from that facility. They provide ambulances to the districts. Once a week, the ambulance drives around the district and picks up patients and drives them to the capital for treatment and home the same day (as much as 200 kilometers each way). That building cost about $50,000 and can be erected in a couple of months.

That evening we had a reception with many of the government leaders, community leaders and business leaders.

The next morning we attended a special trade show put on for us by USAID and the grateful recipients of trade agreements.
Then we flew to Kasane in northern Botswana.

We had lunch with AIDS professionals and then visited the testing clinic and mobile clinic. We learned of another rapid AIDS test. The patient who volunteers to be tested is counseled, then tested, then counseled a little more and then shown the results if they want to know. The patient has to read the test themselves. It is the first step to acceptance of having HIV.

On Aug. 27 we met with the President Mogae of Botswana before boarding a plane and flying to Namibia.
Namibia

The President of Namibia hosted us for a working lunch in Windhoek. He made a big point that was an American way, not Namibian. After the lunch the minister of health gave us a tour of one of their health care facilities. They do not use rapid tests there.

We also visited a treatment center about an hour outside of the capital. The area is from the old middle strata of apartheid.
The Catholic Church has a great program there. I met the mayor of the town and I also met a two-year-old whose mother had been part of the prevention of mother to child transmission. She has AIDS. He does not. We got quite an introduction to the difficulties of breast-feeding in this culture. The safest way to assure non transmission on a continuing basis is to use formula to feed babies, but using formula is a sure sign that a mother has AIDS. In that society, this results in shunning.
Regarding the successful ABCD program for AIDS prevention, the Catholic priest was asked how the Church handled the condom part of the equation. Without hesitancy he explained their emphasis on abstinence and being faithful, but he said they do talk about the pros and cons of condoms. If the person being advised wishes, the counselors will tell them where they can get condoms. ("A" is for Abstinence before marriage. "B" is for Being faithful in marriage. "C" is for using condoms if you don't do "A" and "B". "D" is for Death. If one of the other three aren't chosen, that's what will happen.)

We had lunch at the U.S. ambassador's residence with the Namibian foreign minister. We mostly discussed trade issues and the upcoming World Trade Organization meeting.

In the afternoon we visited a Catholic orphanage.

The Namibian equivalent to the Speaker of our House of Representatives arranged for a tour of their Capitol then hosted us to a dinner with other members from all parties. It was impressive to visit their "Constitution Room" with a conference table and pictures of those who had framed the constitution. It occurred to me that I was meeting with founders of a country. That's an awesome feeling when you relate it to our founders and the lasting effect they have had on our country.

At dinner I sat next to the deputy minister for education who is a founder. We discussed many education issues and the similar challenges people face in both Namibia and parts of the U.S.
Friday, Aug. 29 we left Namibia and traveled back to Washington, D.C.

Observations

HIV/AIDS is a world-wide problem. If it showed up right away like smallpox with something immediately visible the problem would be easier to solve. HIV can lie invisible and dormant for years while it is being transmitted.

Solving the problem takes in-country leadership and political will.

The stigma has to be overcome for progress to be made.

Capacity has to be built to handle the epidemic. That means such simple things as adequate potable water nearby, nutrition programs, basic buildings, and trained people.

Treatments are available that will keep AIDS patients functioning well for years. One hope is that it will keep moms alive long enough to raise their children. Another hope is that the people can be kept alive long enough for a cure to be developed.

HIV can be transmitted from mother to child at birth. If untreated, the innocent die. The good news is an active program to prevent mother to child transmission. The program has a very high success rate and is inexpensive. There is a pill the mother can take as she goes into labor followed by a liquid dose to the infant right after birth that is about 95 percent successful. And equally good news is that the treatment only costs about $2.50 per birth. So what are the problems? The mother has to be tested to see if she needs it at all. Most births are not in hospitals so she has to carry the pill with her for when she goes into labor. Shortly after birth the baby has to be taken to where the liquid dose can be administered (this could be solved with a single liquid dose packaged so the new mother could administer it.) Another problem is that anyone who knows the mother has the pill would put her in the category of HIV positive. This would most likely result in the mother being fired from her job, shunned by those around her and thrown out of her house. Also, relatives look on the pill as a wonder drug. They often steal it for themselves thinking it will prevent them from getting AIDS or cure them.

Many countries have constraints on AIDS testing, such as testing of minors. This presents a problem if a girl is 15 and pregnant and knowing if she has AIDS could allow the prevention of transmission from mother to child. It shows a reluctance to admit the problem. Leaders not asking for testing and leaders not leading by example are also problems.
Government leaders and community leaders have to take a visible role in eliminating the stigma and getting out correct information.

Projects have to be practical and then demonstrate tangible progress to continue.

Mothers with AIDS are encouraged to make memory books for their kids with pictures of the mom and dad and writings about good things that have happened. The purpose is so the orphan can grow up knowing they were once loved. It is essential to have orphan care.

Tuberculosis is a compensable disease so treating this illness saves a lot of lives and money. When there is no cure you don't talk about the disease. Tuberculosis used to be like that. But you can still do prevention. You can be careful not to hurt regular care.

There was a lot of discussion about the World Trade Organization proposal for a waiver to produce generics to cut the cost of treatment.

Its also important to have palliative care - so the dying have as much support at home as possible. Home is the only alternative for most.

Educating people about AIDS in the African countries we visited was complicated by low literacy and multiple local languages. This makes advertising impossible. Add to that poverty that makes drinking water a luxury and some homes that make our homeless shelters seem nice and you have a flavor for the problem. Ninety-five percent of rural areas need water access. There is a lack of the most basic health facilities. There is also the fact that those under treatment need jobs - and the jobs for the affected and infected have to be acceptable to the consuming public. For example those infected wouldn't be able to get jobs as waiters or grocers.

It's hard for us as members of American society to realize the depth of the stigma associated with AIDS. Sex is not talked about. A father doesn't talk to his son about sex. A mother doesn't talk to her daughter about sex. So, certainly a father doesn't talk to a daughter or a mother to a son. That means they can't talk about abstinence or being faithful let alone talk about condoms. They don't understand the transmission of any sexual diseases. Many girls' first sexual experience is non-consensual. Most first experiences are with someone much older. Many first experiences are with relatives. None of this can be discussed between anyone. When a woman is found to be HIV positive and her husband finds out she could be beaten and thrown out of the house.

A common question I asked officials everywhere was, "How much money can you absorb in the next year - each year after that?" No definite numbers had been provided to me by the time our delegation left each country, but the officials assured me the numbers were being calculated, that we would get them, and that there is a limit to how fast they can absorb dollars into the programs.

Too much too fast can't be absorbed. The idea of money coming has already brought in NGO's (Non Governmental Entities) who are hiring away the trained staff to set up an organization eligible to get the money. There is also a problem of the U.S. luring people from these poorer countries to come to the states and work thus drying up the professional work force.

There are worries about insurance companies canceling insurance for people with AIDS. Apparently that is a common clause in high incidence AIDS countries.

In these countries the two fastest growing businesses are funeral parlors and coffin makers. Namibia doesn't have enough wood so people save their newspapers so coffins can be made of paper-mache.

The bill Congress adopted can make a huge dent in the problem. Careful introduction and THEN escalation of the program will produce great results. Challenging other developed countries to participate will dramatically expand the capabilities.
Water programs, blood testing programs, mobile vans to get to the rural populations, work with traditional healers, needle exchanges, when combined with the ABCD multiple choice will make a tremendous difference.

The United States is putting its money where its mouth is on AIDS. The world is following the example and thankful for the leadership.