The reason I was in Africa, was to document the untold relationship between Case Western Reserve University, its teaching institution University Hospital in Cleveland, and a string of medical institutions throughout Uganda. The focus of my work concerns answering the question:
Why has CWRU been so successful in Uganda? – building a case for dealing with Rheumatic Heart Disease (RHD) in Eastern Africa.
RHD is an illness citizens of the United States know relatively little about. In order to understand the breadth and scope of this project, we must understand the basics of the disease, Ugandan history, the power of relationships, the necessity of sustainable development, and how research and investigation play a role in the future of Uganda.
To be short for now, RHD is a heart condition that results from multiple cases of untreated Strep Throat. It is easily treatable, but because it affects those living in extreme proximity without access to medical care, it is stereotyped as a disease of the poor. This brings with it a stigma by which parents may not seek medical attention for their young ones until the heart’s valves (pipes that bring and expel blood from the heart) are too damaged for a child to live a long, healthy life. A simple series of low-cost injections, easily accessible penicillin can treat the disease.
In the 1940s, Ugandan medical infrastructure was seen as some of the most sophisticated in the world. Surgeons from all over the region of Africa, the Middle East and parts of Asia were traveling to Mulago Hospital in Kampala, Uganda for serious treatments, surgeries and care. But with the war-torn decades of the 50’s, 60’s and 70’s during Uganda’s third president Idi Amin, Ugandan medical infrastructure suffered greatly. Idi Amin killed between 100,000 and 500,000 of the country’s populous. He fled to Libya, and died in Saudia Arabia in 2003. As a result of his horrendous crimes against humanity, the most prominent doctors took refuge in the United States, Europe and parts of Asia, never to return. Buildings were physically destroyed, and professors of medicine were not able to continuously educate their pupils. As a result, Ugandan medical infrastructure fell into decline and lost much of its noteworthiness.
In the 1980s, ’90s and early 2000s, HIV ravaged Uganda. Prevalence was as high as 30% among adults. Transmission from pregnant mothers to their children was a given, and the stigma of the disease made it extremely difficult to educate the public about preventative measures and treatment, such as Retro Viral regimens.
In 1986, Fred Robbins, pioneer of the polio vaccine in Africa, introduced his student and now Case Western professor of infectious disease, Dr. Robert Salata to institutions of Kampala, Uganda. Uganda was an opportunity to do research, and improve the outcomes in the country.
It was not long after that Case Western Reserve University and its teaching institution University Hospital created a partnership to study HIV, Tuberculosis and Malaria in Kampala, Uganda in partnership with the country’s premier university, Makerere in Kampala.
Over the years, the HIV, TB and Malaria outcomes have improve tremendously. HIV among children is now as low as 6% (down from 30%). Transmission of HIV from parents to children is almost 100% preventable. TB is treatable. Malaria takes under 25% of the lives it did thirty years ago, and is now thought to be commonly understood throughout the public. These diseases have less and less stigma associated with them every year.
So why is Rheumatic Heart Disease such an issue in Uganda?
We must understand what Rheumatic Heart Disease (RHD) is, why it is so prevalent in developing nations like Uganda, how people interact with healthcare, and why at the improvement of HIV outcomes in Uganda is improving RHD outcomes a link to developing a primary healthcare system in Uganda?
Above are the educational posters placed throughout Uganda. They are the result of research that has led to understanding RHD, and also to undemanding the importance of the Ugandan government investing in such community awareness.
RHD is, simply put, the result of untreated Streptococcal infection. 10% of the population (worldwide) will have an unnatural reaction to Strep, whereby their own body begins fighting itself. Overtime, untreated Strep leads to irregularities in the way heart valves function. This causes shortness of breath, heart attacks and other illnesses. It affects the productivity of the people it affects, as they feel sick and cannot work. This is a easily treatable disease, but like HIV treatments, it requires a continuous, prolonged care treatment program that can last as long as 10 years.
Below is a basic echocardiogram. This uses a transducer wand to create ultrasound waves (like sonar) that effectively make an image of an organ. In our case, a heart. The magic lies in the equipment, which costs at minimum $65,000 (USD). The computer seen here receives the waves and constructs an image that can be viewed from multiple angles.
The echocardiogram is the most reliable way to detect RHD. The power of the echocardiogram is that nurses trained in a basic skill set can use it.
Medtronic, which grants money to the University Hospital to do the work it is doing, is partially responsible for this, and several other machines, throughout Uganda.
The echo records registry was developed over the past ten years in order to make a data-driven case to place resources in the treatment of this easterly treatable, but often misunderstood disease. While this book looks basic, and it is – it is a pen-and-paper record system, it is the fundamental background to the RHD campaign. By checking patients, especially children, throughout Uganda, the records are being used to make a greater case for future funding of treating this horrible, unnecessary disease.
That’s where Dr. Emmy Okello, Dr. James Kiyama (Below) and Case Western come into play.
Because of issues of class, and pride, patients often do not discuss important topics like HIV status, where they live, their diet, and other important factors in making diagnoses – especially for children. While Drs. Okello, Kiyama and several at Mulago are able to build real relationships with their patients, and create a sense of trust, many doctors cannot say the same. As a result, Dr. Chris Longenecker has worked with Okello and Kiyama to train nurses. Nurses are the ones who create a sense of calm among patients. The Ugandans I worked with feel safe and are open and honest with nurses, explaining the crucial details to their medical history that allows for proper diagnosis and treatment.
More on nurses’ work in future articles.
Below is Justine Ngumo, the administrator of the CWRU programs in Uganda. Another challenge is working with administration to account for procedures, resources, training, staff and employee payroll, and other accounting measures we may take for granted. Changing the system of operations at Mulago plays a major role in determining whether or not future grants are awarded to Uganda. Justine has quite a bit of work on her hands.
Dr. Juliet Nabbaale, seen below, will be the next in a growing series of cardiologists arriving at Case Western/University Hospital for training. Arriving in January, she will be specializing in heart failure treatment – specifically designed to combat issues of RHD.
(Above) Doctors like Dr. Grace Mirembe from the Joint Clinical Research Center originally were staffed to control pediatric HIV/AIDS, and mother-child transmission of HIV. In the 1990s, rates of HIV in children were as high as 30% in urban areas of Uganda. Thanks to the help of doctors like Grace, the advantageous delivery of PEPFAR dollars (over 1 billion) from President George W. Bush’s administration, and countless other organizations contributing to the cause, Uganda (And many other nations of Africa) secured and developed physical infrastructure, trained nurses to do what only doctors were knowledgable of, and educated communities in several organizing campaigns. All of this, of course, was in light with campaigns run by the Ugandan Ministry of Health.
However, as HIV has decreased to as low as 6% in pediatric cases, and mother-to-child passage of HIV is almost 100% preventable, capacity is down at this established and trained facilities. Case Western and University of Hospital of Cleveland are now working to ensure that these facilities do not go to waste, as they easily could. As a result, Case Western have re-trained doctors like Dr. Mirembe to focus on issues of RHD, the number one cause of debilitating heart disease in Ugandans – especially in pediatric, or childhood, cases.
Why is this so unique? Part of the reason is that Case Western’s relationship goes far beyond the money supplied in the 1990s and 2000s, PEPFAR and the HIV donations that came during that time. Many organizations moved in because strategically there were opportunities for money, and opportunities for infectious disease research in the developing world – a very important set of populations to study.
CWRU has been connected to Makerere University, Mulago Hospital and other institutions throughout the country since 1986 when Dr. Robert Salata began engaging with his colleague and mentor, the world-famous Dr. Fred Robbins who essentially pioneered the eradication of polio via medicine, cultural understanding, community organizing and most importantly, sustainable training of medical staff in Africa, specifically in Uganda.
Some of the earlier facilities from the 1990s still exist to this day. They run research programs on Malaria, Tuberculosis, HIV/AIDS, RHD and more. The first photo is the first research collaboration building operating at the top of a small hill above Mulago Hospital. Once, CWRU was merely a name; now it is almost completely integrated with Makerere University Medical School’s teaching programs, the Heart Institutes work procedures, guideline creation and in shaping the business processes that account and raise money for future operations.
It may all look simple, but inside these walls innovation is taking place out of both necessity, and out of passion for the future. Keep an eye on Uganda. Not only is it beautiful, but it has an energetic population already leaps and bounds ahead of where others may be with such a past.