We’ve heard a lot about the nodding disease during our time in Gulu. Our first introduction was at the Olwal Health Center, where the Clinical Officer Susan described to us the condition. Nodding disease manifests similarly to epilepsy, with children going into fits, sometimes even falling into the fire pits in their houses. The distinctive characteristic is the drooping heads; the affected children seem like they are constantly nodding. No one knows how this disease started, how it is spread, or how to find a cure. It is truly plaguing Northern Uganda, to the point where the District Chairman of Gulu, Martin, established a special task force to investigate the disease. Currently, Gulu health officials are sending children with Nodding disease to appear in front of Parliament to make them take notice.
It sounded really scary. But we only had this image in our mind of the disease, a sort of abstract notion of the suffering it imparts. Until this week, that is. On Monday we visited Gulu Hospital, the government run district hospital. Patients do not have to pay for services. But that does not necessarily mean they receive the services.
The hospital personnel were very gracious to us and agreed to take us on a tour of the facilities. As we visited the different departments, I was very impressed with the staff; they were working incredibly hard and everyone was busy. And they all seemed to genuinely care about their patients. But the problem was, there was not enough of them. Or enough equipment. The hospital was packed with patients, waiting on chairs, and on the floor, and even sitting in the dirt. And the thing is, it’s not like all of the beds were full. I just think the hospital did not have the resources to handle the volume of patients it received. There was almost no equipment in the wards. Sterility seemed to present a huge problem. And the range of medical services was limited.
Seeing the actual patients in the disease wards was, to put it simply, upsetting. Lying on the beds were men and women who were literally skeletons. They could barely move, and many were missing body parts. The children were obviously malnourished and suffered from a variety of rashes, worms, and respiratory diseases. Personally, I felt incredibly uncomfortable looking at them, like I was invading their suffering. I know that if I were a patient, I wouldn’t want some random visitors touring my ward. The rest of the GROW team felt the same, so we asked to move on.
It was in the children’s ward that we saw the child with Nodding disease. His body was strangely distorted and he had the distinctive drooping head. The worst bit was his expression; he had a haunted look on his face and a glazed look in his eye, as if he wasn’t really processing anything around him. As I said above, just hearing about Nodding disease sounded scary; in person, it really was. But then the boy came up to me and held out his hand. Inside he held a handful of peanuts. A boy who probably hadn’t had a full meal in goodness knows how long was offering me his only food. It was heart-wrenchingly sweet. All I could think about was how this boy should be running around playing with his friends, or going to school, or helping around the house. Not wasting away in a hospital that did not have the capacity to cure him.
We talked to the nurse in charge of pediatrics, Sister Grace. A powerful woman to say the least, she was also incredibly caring with the children she interacted with. One thing she said really struck me. While talking about hospital resources, she angrily bemoaned the fact that NGOs only pour their funding and resources into local health centers. No one gives money to the district hospital, and so they are severely over budget. Franny said this is because of bureaucratic issues – if you donate money to a government hospital it has to go through the Ministry of Health, and will probably get funneled to the hospital in Kampala. So I guess it makes sense that NGOs want to fund local health centers. But still, the fact remains that the national health system needs to be strengthened. But how? I certainly don’t know.
After Gulu District Hospital, we visited Gulu Independent Hospital, a privately owned, for-profit hospital that patients have to pay to attend. Immediately upon entering the hospital, the differences between the private and the public hospitals were apparent. This hospital was very clean, everything was new and in good condition, and they had fantastic equipment: full service dental and eye machinery, a complex x-ray set-up, equipment to perform In Vitro Fertilization, and every kind of analytical chemistry machine you could think of. Private patients could stay in decked-out rooms with giant TVs and queen sized beds. It was a beautiful hospital. But the biggest difference between Gulu Independent and Gulu District Hospital was the volume of patients. Gulu Independent was almost empty. The hallways were silent and the wards were less than a quarter full. Why? Because most residents of Gulu cannot afford admittance to Gulu Independent. And that I think is one of the biggest wastes of resources I have every seen. Here is a hospital with the capacity to treat pretty much every ailment you can think of, and it is grossly underutilized. All of that equipment and all of those services are barely used, while people are literally dying not more than a mile away due to lack of resources. And Franny said it’s not like Independent Hospital even makes such a great profit. Despite the fact that they charge for services, so few people can actually pay that they don’t make much money.
One more thing I will note. When visiting the wards of Gulu Independent I still felt invasive of people’s privacy. But not nearly to the extent that I did in the government hospital. At first I did not understand why; after all I was still touring a place of others’ sickness. But I think the difference is that in Gulu Independent, I knew the patients were being well cared for and that they would most likely make full recoveries. And to begin with, the patients did not look like they were at death’s door. I did not feel like I was prying into someone else’s hopeless situation. And that made me mad. Money should not be the distinguishing factor between an illness being a lost cause and an easy fix. Again, I’m not saying that I know how this system can be fixed, but I know that something needs to change.
Our last stop was at the Joint Clinical Research Center, a government run initiative that conducts HIV research, such as testing cheaper drug alternatives. As it was explained to us, they conduct clinical trials on patients. Some patients receive services for free if involved in a trial. Other patients can pay for HIV services. The center itself had a really nice lab with all the latest machinery. And touring the center was super interesting because they told us all about the technical biological and chemical aspects of their research. But again, the place was pretty empty. There were a good number of staff, but few patients. This just continued my frustration. It reminded me so much of the United States, where if you can afford it, you receive the best medical attention there is. But if you can’t, you had better hope for a miracle.