Uganda’s Children are Dying! Are Pharmaceutical Trials to Blame?
By Mary Romaniec
A little background is needed here. Uganda is located in East Africa in an area known as the African Rift Valley along Lake Victoria and Lake Albert on the western side. The northern part of Uganda borders the Congo, Rwanda, Kenya and Southern Sudan. What makes this area unique is that it is considered a place of great natural wealth in the form of minerals ranging from gold and tin to copper and cobalt. It also has untapped reserves of natural gas and crude oil. The paradox is that this vast source of wealth, along with regional conflicts, has led to complete impoverishment as people crowd into a small area of usable land, their mineral resources sold to foreign interests and their forests decimated to make room for more farm and grazing land to cope with the soaring population. Along with this population increase a whole host of diseases grew in proportion, making northern Uganda ripe for disease research, including HIV and Ebola.
Enter pharmaceutical interests. The request to do research on the population became so huge that a governing review board was sort of established. The researchers were to register with a review panel based out of Markerere University in Kampala. On the University’s own website they acknowledge the need for some ethical review of research done on their population, and admit the lack of funding (presumably to ensure its efficacy).
With this level of interest in the diseases of northern Uganda one would conclude that ‘nodding’ causes should be known. However, nothing concrete connects ‘nodding’ disease to this area except for two plausible theories: either a direct result from the H1N1 swine flu vaccine trials, or from the swine flu directly infecting the population.
As ‘nodding’ disease began to manifest in Uganda, a probe was beginning through the World Health Organization on the flu vaccine made by GlaxoKlineSmith, Pandemrix, which began to be suspected as a cause of narcolepsy in European countries. The announcement was made weeks after a Finnish Study suggested that children who received the GSK shot were nine times more likely to develop narcolepsy. Finland opened its own investigation on Pandemrix after their population of children began to show symptoms of ‘nodding’ disease, including a complete loss of muscle tone during severe attacks. And yet, the WHO said that Pandemrix remains on the “preferred vaccine list” and countries should continue to administer the shots. The population of northern Uganda was potentially involved with the H1N1 vaccine trials.
What makes the Finnish report interesting is they lay out the epidemiological instances of narcolepsy, which in their population coincided to about one for every two thousand people annually before this study began, across a wide spectrum of ages.
By May 2010, the first cases of narcolepsy, or ‘nodding’ disease began to be reported in Finland, with immediate concern that the median age of those afflicted was 12 years, with the onset occurring on average 52 days after the inoculation. In all cases the symptoms were characterized by unavoidable falling asleep during daytime, different sleep disturbances combined with changes in the appetite and metabolism. It seems that eating sets off attacks, which is why many of the children, at least in Uganda, have been reported as malnourished and underdeveloped.
By January 2011, Finland knew they were dealing with serious problem and released their report of the huge increase of narcolepsy cases, possibly associated with Pandemrix H1N1 flu vaccine. In their report they accounted for 102 new narcolepsy diagnoses, with 62 of those in the 4 – 19 age group. At this point only Finland, Ireland, Sweden, Iceland, Germany and Canada were reporting similar incidences of narcolepsy. Vaccine lot numbers were discussed but nothing conclusive drawn from the results of the data.
So why is it a stretch for some to correlate what happened in the European countries to be any different than what is happening in northern Uganda, and parts of Southern Sudan? It isn’t. To date over 4000 children have been afflicted with ‘nodding’ disease in Uganda alone, with over 200 children dying. In Sudan the numbers are also rising into the thousands, possibly as high as 8,000.