Hope for HIV in Africa: Observations by an Eldoret Journeyman

Hope for HIV in Africa: Observations by an Eldoret Journeyman

Terry J. Hannan, MBBS, FRACP, FACHI, FACMI

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 weekon 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 isnotcultivated 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.