Hope for HIV in Africa: Observations by an Eldoret Journeyman



I first came to Eldoret, Kenya, in January 2000 amid the hustle and bustle that is associated with the end of a millennium. I carried with me a knowledge base of total naivety regarding life in Kenya. Was this good or bad? Only time and the assessment of others will answer this question. Since that time, my twice-yearly journeys to Eldoret have induced an evolutionary change in my perspective of life.

If we are all equal on this "third rock from the sun," then when I move from a life of free access to healthcare; robust social security; equal rights for women; drinkable, reliable water; electricity (modern transport and communications), and disease states that have been virtually eliminated to Kenya, where the opposite is a daily reality, I am privileged. What are some of the differences between my "normal" life in Australia and that of a Kenyan (or other persons of the African continent)?

The average income of a Kenyan is US $390 per year (AUS $490). In a brief pause, we could ask ourselves when we spent that amount of money on a regular basis.

Many Kenyans have no running water, electricity, or reliable transport. Life is sustained by subsistence farming, poor nutrition, and the persistence of curable disease states that are rare or uncommon in our developed economies.

Most women are required to rise before sunrise and walk 1-2 km to a well for water, and then return to cook the maize-based diet for their household occupants. If she also has a job, she then has to walk along crowded, unsafe roads for 5-10 km, and then repeat the process in the evening. Her husband is likely to have no employment, and if he finds it, it is very likely to be in a remote location for long periods of time with all the social risks that this entails.

If this marital union breaks down, most of these women are unable to return to or be supported by their original families, and many find it hard to gain useful employment. How do they survive financially? For many, the answer is simple: The only saleable talent that they have is their bodies.

Into this environment, we now have the most deadly pandemic in the history of human evolution, with some 180,000 people dying (predominantly children to adults less than 35 years of age) a week on the African continent. This is the nature of HIV/AIDS in Africa (and evolving in Asia).

To quantify this is almost impossible to the human mind. So here is an example. I live in a small city of approximately 90,000 people, so the African death rate from HIV/AIDS means that if you took a long weekend and returned, there would be no people alive in that town.

The current approach to this disease and its widespread political, economic, and social implications has been adequately described by a colleague from Harvard University, Boston, Massachusetts, as being like, "the band played on." This sits opposite the management of SARS and the "potential" flu virus of which action is very proactive in their management.

When all seemed hopeless (and some say that it is), something dramatic happened in Eldoret in 2000. A small, dedicated group of people led by the current director of the project and his wife made a resolution in 1999, to address the situation in which 50% of the people in the regional hospital of Eldoret were dying of HIV/AIDS, with widespread depression, death, and despair, that they would not let this scenario continue. How this was to be solved did not matter; it just had to happen.

This couple's inspirational approach to this problem led to a small pebble of hope to begin rolling against this massive tsunami of HIV. What did this hope bring?

The work ethic of these 2 individuals and their devotion to the needs of the Kenyan people has inspired many local Kenyans and their Indiana colleagues, clinical and nonclinical, to devise ways to manage this pandemic. One of those who preceded them was the director of the community-based public health project. He had worked zealously in this region on public health issues for more than a decade and thus provided the foreign mzungus (white people) with a core knowledge of how Kenyans thought and worked. He never asked for "time off" during the visits that he and I have shared in Eldoret. His work here was initially ancillary to his major professional employment in Indiana. He has chosen to visit Eldoret several times a year despite his family and work commitments in Indiana. He has chosen to work full-time on the "Kenyan project," gathering funding for its evolution and maintenance.

Projects such as this HIV/AIDS program commonly gather many gifted people together and survive through their drive and sacrifice. Our director of research is another of this inspirational group. This person, who despite suffering a life-threatening illness that required chemotherapy, led a small team of clinical informaticians in 2000 in the tasks of trying to manage the HIV crisis with modern information technologies. The intensity of the workload in the brief time that the members were in Eldoret led him to adapt to the policy, "Sleep is for wusses." This comment emphasizes that the time we spend in Eldoret is very precious, and shows that we cannot delay any longer because "the HIV/AIDS express train has already left the station." Once again, the reminder is that 180,000 people in Africa die every week from this disease!

The drive to utilize these technologies came on the basis of his team's knowledge and experience of more than 30 years in this discipline that without information management you cannot manage or measure care.

Another major element of the project at its initiation and in its continuation is that these information technologies must become useful to the local population. We have adopted the philosophy that, rather than feed a man or a woman fish, teach him or her how to fish. Therefore, in 2000 we began with minimal support for our work, but we had hope.

We chose to implement new computerized technologies that were affordable and sustainable in a resource-poor economy in which there are unreliable power supplies, and people had very little knowledge of computers. To make it work, we also needed the local staff to be able to maintain the system when we were not there.

We involved ourselves working to the philosophy described by Robert Frost. He stated, "Hope does not lie in a way out, but in a way through."

More than 5 years have passed since we began this project. So what has this hope and these long trips and short sleep brought to us all? For some of us, it has been truly "life-inspiring," and for the Kenyans, "lifesaving."

In September 2005, the project supported a significant economy in Eldoret. It provided approximately US $400,000 (US $1 = 80 KSh) per month to this local economic region.

The foundation for change has been the clinical, social, and political effects of what is defined as the electronic medical record (EMR) system. It was initially called the Mosoriot medical record system (MMRS) but is now a Web-based project called the AMPATH medical record system (AMRS). Here, the information technology (IT) has permitted us to measure, manage, and alter the course in the management of HIV/AIDS in Kenya and beyond.

In 2000, most of the local Kenyans who are now core managers of the project had neither seen nor used computers. With this system, we are improving care and people are getting better. Children are born to pregnant mothers who have major reductions in their HIV infectivity rates due to closely monitored care with the EMR. Parents are surviving on treatment regimens with high adherence rates (closely monitored by the record system); therefore, now we have children growing up with at least 1 parent to guide them to adulthood and not becoming orphans of poverty and HIV/AIDS.

Initially, the program was established in a small clinic in the Mosoriot region near Eldoret. After 5 years, the project exists in 10 Kenyan sites separated by more than 70 km and is being proposed as a model for the treatment of HIV/AIDS in other African nations.

The project now involves and inspires many mzungus from Indiana and Australia; however, more importantly, it has given the Kenyans in Eldoret and its regional centers hope.

Many of these local people have employment on the basis of their involvement in the AMRS project and seek higher ideals in their professions. Previously, their job prospects were poor, and to gain meaningful employment, they would often have to move to other centers where the possibility of employment may be only marginally better.

The threat of HIV/AIDS is being confronted directly, and the project continues to infiltrate all aspects of the social structure.

I am unable to recall all the unique persons who have also inspired me to continue coming to this small region of the world. Here are but a few.

There was the nursing sister who was in charge when we began at the Mosoriot Regional Health Care site. She was a driving force, despite her size. A pocket battleship is how she can be defined. This is a woman living alone in a country where HIV is not even talked about, and yet, she would travel on local buses distributing condoms and getting people to talk about AIDS. Her main risk to others was the enormous bear hug greetings that she delivered when they reunited with her. She could "see" the benefits of what we were trying to do long before many others in senior decision-making positions.

Following from the director of nursing were the other clerical and nursing staffs at the same clinic. These young women and men had never seen complicated computer technologies before we arrived; however, they adapted their lives and work practices "to make it work" in less than 18 months.

In remote areas like Eldoret with limited resources, we were able to utilize the talents of a local informatician who had obtained his doctorate in China. His ability to program, maintain, and solve computer problems was a core factor in the project's survival. He was supported by the staff from Indiana despite limited communication technologies and time differences across the globe.

What were the outcomes of these efforts?

Through capturing and managing clinical data on patients in this remote clinic with computers sustained by standard electricity, batteries, and solar power, the project was able to influence and change the Kenyan national government and local policy and philosophies in the management of HIV/AIDS in this region to an extent that no one else had been able to do on the African continent. These changes occurred because we have "reliable, up-to-date healthcare information" captured and reported by the "local Kenyan people."

As an example, we were able to demonstrate that in the initial 2 years of our project, the clinics in this region were not even recording this deadly disease in which the prevalence was estimated to be 14% of the population. So serious was this problem that the median survival of the population in Kenya had fallen 17 years in 5 years. How would developed economies respond to such a pandemic?

A recent study in 2005 showed that 68% of the Kenyan land available for cultivation is not cultivated because there are less people alive to do this!

Following the initial revelations shown by the information, we were able to obtain from the clinical care process in Mosoriot a process of change that has begun to radiate out from this small regional center. In more central regions, such as the local Moi University and Teaching Hospital, a program that is dedicated to HIV therapy is being implemented. Despite the costs of care and the inherent risks for failure, antiretroviral therapy for infected people and the closely monitored management of patients did happen.

A significant part of this care delivery was the management of HIV in pregnancy through the Maternal To Child Transmission-Plus (MTCT-Plus) program. Here, effective treatments can reduce the risk for transmission to newborns in a very high percentage of cases when antiretroviral therapy is given at the appropriate times.

In Kenya the treatment regimen achieves high levels of compliance and effectiveness through the use of the EMR system -- a feat not possible with paper-based systems. An interesting statistic obtained from the EMR is that we have medication compliance rates of > 85% in Kenya under this project; however, HIV therapy compliance rates in many developed countries range from 40% to 70% and are probably less!

All of these activities cost money, time, and political negotiations. However, it has happened. The system is fragile, yet survives.

What does this system incorporate in 2005, when it began in 2000 with essentially nothing?

The system has attained efficiency in which data and information are captured on 1500 patient encounters per day. Once the project had expanded beyond the original Mosoriot Regional Health Center and became focused on HIV/AIDS care, the initial data entry was managed by a single person. She now manages 8 or more data entry staff who are able to electronically record information on these 1500 patient encounters. This is a massive increase in workload; however, the demand for proper clinical data and information continues to expand as the project makes further inroads into HIV/AIDS care in this region of Kenya.

How many healthcare institutions in Australia or other developed nations can manage this level of data capture?

Beyond the technical and administrative aspects of the project, there are rich, personal journeys of people involved within the ongoing developments. For example, the young, single woman who has become the director of the data management center tells the story of how she now has a "future" mapped in her mind that will see her helping Kenyans manage this devastating disease state. When asked, she had never perceived that her role in Kenyan life would be so significant. She doubted whether she would ever be able to be employed before becoming involved in the HIV/AIDS project.

Another young Kenyan who is involved in the development of the computerized system, which is the cornerstone of the project, is the senior programmer. Prior to his involvement, this young man had completed an IT degree at the local institute. He is also single and had very little prospects for meaningful employment. From his initial days as a programmer, this young man is now the senior IT manager of the project. His work has elevated his social and economic status, and he has experienced journeys and educational opportunities that he had never considered possible. Part of his work has involved travel and study in the United States. He also states that this project gives him hope for the future of Kenyans.

Of the many "recovery" stories involving Kenyans who have their HIV/AIDS managed under the Eldoret project, the first patient treated is one of the most moving. This young man was a fourth-year medical student at the local university. He had gone home to die with his parents with his own awareness that he had HIV/AIDS. His parents believed that his body was invaded by a great evil spirit that had come from a long distance because his illness was so severe. His student colleagues collected him from his home and took him to the hospital. When he was seen by the director of the program, he said, "This young man will not die under my care. I will somehow obtain his medications for the rest of his life."

This young man has been on therapy for more than 5 years; he has vision in 1 eye, yet he manages the follow-up compliance program for HIV/AIDS patients in the local Kenyan villages. He is a Kenyan managing Kenyans. One of the touching aspects of this man's story is that in 2005 he met a woman who also has HIV/AIDS, and there is a possibility that they will get married.

As stated previously, if the local Kenyan people are unable to sustain the project, then it will ultimately fail. The clinical and research faculty of the Moi Teaching and Referral Hospital have experienced the "power" of this EMR system in patient care and research, and they have become a part of the driving force to expand the project to more regions in Kenya. As professionals, they have also become "known" because of their quality research publications that have resulted from their use of EMR. These people provide inspirational modeling to their current and future colleagues.

A significant aspect of this program is that it is not just about HIV/AIDS. It is about people and survival. Many who are made well under active care within the HIV/AIDS program and have a chance to live for an extended period of time with their children are still faced with the cornerstone problem underlying the spread of this disease in Africa. This is poverty.

The clinical management of care with highly active antiretroviral therapy (HAART) has been linked with a program called the HARVEST Initiative to create the HHI program. The HARVEST Initiative is driven by an eclectic, young Welshman and his New Zealand wife. This agronomist has boundless energy, does not complain about hardships, and has shown Kenyans how to cultivate land in a more productive way so that they can survive on a diet of highly nutritious food that will ensure that poverty and malnutrition are not the reasons for a premature death. To be around this agronomist is like trying to catch mercury off a table, yet he has managed to create 5 of these self-sustaining farms managed by HIV-positive Kenyans.

During my recent visit in September 2005, I had the opportunity to visit the latest farm managed by him. It is 7 hectares in size and virgin land. It has been under his management for 5 months. This farm has been cultivated in rows of 90+ m with high-growth foods, such as carrots, parsley, cabbages, leeks, and other vegetables. For example, from this property more than 800 kg of cabbages and 400 kg of carrots per week are produced; this demonstrates how land under correct cultivation can be extremely productive. It is irrigated by drip irrigation, as used in arid countries, such as Israel.

Through the employment of local workers at 150 KsH per day (about AUS $4), this high level of production has occurred, and this plot acts as the plant nursery for the current and new farms under the HHI scheme. On this latest farm the workers have installed a pipeline from the local river, from which 40,000 L of water a day are pumped into water tanks for irrigation. They use a small gas pump that pumps 20,000 L up from the river (50 m upward) in 1 hour and 40 minutes with 2 L of gas. The excavation for the pipeline from the river with manual labor has led to the removal of rocky shale that has been used to build terraces, which will reduce erosion. The soil is already being "composted" and planted with appropriate plants. This all leads to a massive increase in production.

In a region of massive unemployment, the agronomist employs around 80 people per day. These individuals arrive at the farm gate in the morning wanting to work from 8:00 am to 6:00 pm for 150 KsH (AUS $4) per day. Many of these people are barefooted and poorly clothed but want to work. There is no social welfare in this community.

On a previous visit, I had managed to raise funds for a solar refrigerator and panels. The solar panels provide permanent electricity 24 hours a day to these farm buildings, with battery backup at night. With normal consumption, the battery backup has never been under 80%.

We are now looking at seeking funding for solar panels to manage the computers to control the inventory and distribution of food resources from this farm, because the supply chain for food and seedlings to all HIV regions has become a major operation. Food distribution from the farms for the HIV/AIDS patients is not random; it is controlled with informatics systems, so there is no waste or deficiencies in the food distribution to the clinics.

As the EMR system expands to meet the needs of the project, we have had to facilitate its use by making the record accessible via the Internet. To do this, we have 2 gifted clinician informaticians who, when asked to upgrade the complete medical record system, just said "yes." Despite their time commitments in Indiana to their core research and clinical programs, they have demonstrated the ability to create time out of nothing and develop a Web-based, internationally available, medical record system for use in Kenya and other developing nations to combat and manage HIV/AIDS. Neither has been known to complain. They demonstrate an incredible ability to be "locked way," produce amazing results, and still remain socially wonderful people. Their commitments are saving years in electronic record program development in this region.

During my most recent visit in September 2005, the "evolution" of this program has become more apparent. The Eldoret "compound" is a busy "metropolis" of 4-wheel drives, computer technologies linked to the Internet, and rotating US-based medical officers and students committed to working unpaid in this region.

In a region where 5 years ago HIV/AIDS was not mentioned, measured, or discussed, we now have a 4-story HIV center (The AMPATH building) that is dedicated solely to the management of this disease. It has wards for adults and children, laboratories, and a school for the children as well as adult education centers. This building stands as a symbol of progress and success in an impoverished nation where one of the worst epidemics in the history of humankind is occurring.

To facilitate the HARVEST program, we have engineers looking at ways to improve farming techniques and food distribution. There are artists who are inspired by the environment and, more importantly, the people.

To nourish this "small army," we need food. Within our compound in Eldoret, we have a tireless chef who prepares our meals, and at night partakes in her musical group that provides the rich sounds of Kenyan tribal music from her apartment when she practices.

The "tentacles" of the AMPATH project reach out through the whole social structure here in western Kenya. During this visit, we met a retired Kenyan couple who have "taken on the orphans of HIV" in their retirement (in their 40s) and managed through "faith" and hard work to provide an expanding accommodation to these children. These 2 people are looking forward to developing an even bigger dwelling that will be supported by their farm and will provide education and medications to these children.

They would greatly benefit from solar power for their dwellings because then they could cook, educate, and perform other tasks that are necessary for these important social tasks and give these children a future. The age range of the children is from about 6 months to 10 years. These are the formative periods of their lives. Without this help, they become the statistics of poverty and HIV in Kenya and rarely see adulthood.

With the acreage that they have managed to acquire, they will use the HARVEST program techniques to become self-sufficient in food production for the orphans. As of today, the September 19, 2005, the AMRS project has been funded by international philanthropic and government agencies, such as Rockefeller, the Gates Foundation, and the Bush Africa Fund (PEPFAR). The World Health Organization is now deeply involved with this work.

In late September 2005, I flew in a small plane with my colleagues to the town of Mbyea in western Tanzania. We landed on what could be described as a cricket pitch. Here, I saw wards full of men and women dying from HIV/AIDS. The incidence of HIV in this town is 19%. However, here was another "candle in the darkness of Africa." A group of Tanzanians had taken our record system and modified it to their needs and were offering care (hope) to these local Tanzanians.

It is impossible to define the emotions when one stands in a ward of 50 people dying of HIV. So I am privileged to be here. I have also seen that when "there is no other way, there is hope."

We have changed care in Africa in the management of HIV. Whether we will win, time will tell. At least we have lit candles in the darkness of African HIV care and management.

Readers are encouraged to respond to George Lundberg, MD, Editor of MedGenMed, for the editor's eye only or for possible publication via email: glundberg@medscape.net


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