By Mary Romaniec
Grace is a friend of mine from Uganda, a country with a mixture of cultures carved out in part by a long line of civil and territorial wars. In our many conversations about life in Uganda, Grace has regaled me with tales of the delicacies of bush meat, picking mangoes fresh from the tree, the acceptance of bigamy, and life growing up in a village in northern Uganda. Of all of her stories about Uganda, Grace has made one thing clear—she loves her homeland but would never go back to live there.
So when I saw the headlines that described the situation going on in northern Uganda where children are dying of a mysterious disease, otherwise known as ‘nodding’ disease, I knew to get her opinion. The disease is similar to narcolepsy, only with the added condition that many of these children between the ages of 5 – 15 eventually die from seizures and malnutrition. Reading the symptoms of the disease it became apparent that these children were mimicking many of the traits of encephalitis or traumatic brain injury. In truth, the symptoms mirrored vaccine injury. Grace was not surprised and thoroughly blamed the government for their past transgressions of selling out the population of northern Uganda.
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). What follows is an explanation of the International Review Board from their website:
The Science and Ethics Committee (SEC)/ Institutional Review Committee (IRB) was established in 1992, when researchers realized the need for an IRB to oversee the research and address human protection issues. The UVRI science and ethics committee was established with assistance from each collaborating programs that is, Medical Research Council (MRC), Center for Disease Control (CDC), Rakai Health Sciences Program (RHSP) and International Aids Vaccine Initiative (IAVI).
The Institute with the assistance of the collaborating programs was able to solicit for funds to help in the day-to-day activities. In 2003, members suggested the need for a secretariat to coordinate the review process. However, due to inadequate funding, this was only realized in 2007. A secretariat was established with a full time IRB Administrator, a part time Regulatory Officer and staff in the Director’s office to assist in coordination of UVRI SEC activities.
Objectives of the UVRI Science and Ethics Committee• To contribute to the development of quality and consistency in the ethical review of biomedical research at UVRI.
• To protect the rights and welfare of research participants.
• To provide ethical standards for conduct of research involving humans as research participants and to ensure that research takes into account social and cultural sensitivities of participating communities.
It is not difficult to imagine the gray area of interpretations in this program, especially the part that reads “ethical standards for conduct of research involving humans as participants.”
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. Causes were generalized and not necessarily related to genetics, although genetics seemed to play a minor role in cases of identical twins. However, the study went on to correlate that narcolepsy in general can be brought on by a variety of infections including streptococcal A and viral infections. Other triggers could, but not necessarily include allergic reactions, inflammatory diseases, autoimmune disorders, brain damage, thyroid dysfunction, and severe psychological trauma.
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. Unfortunately for most of the children in these African countries, access to health care is limited. While the children in Europe were being cared for in hospitals, the children in Uganda were being abandoned and left to die by their parents who could not, or would not, continue to care for them.
It was reported that children with the disease were significantly deficient in Vitamin B6, which raised a red flag. The CDC, whose field team includes nutrition specialists and neurologists as well as infectious disease experts have begun conducting tests to check for levels of Vitamin A, B6, B12, heavy metals as well as genetic markers in the southern Sudan population. It has begun to sound eerily familiar. Is it possible the CDC may actually be looking into the direction of vaccine trials gone bad? Probably not, but the testing of these biomedical markers is warranted—and suspicious.
To be fair there is a possibility that this is some version of the African swine flu run amuck with just children as the victims. Another possible theory is that this is related to black fly-borne parasite that causes river blindness, or onchoceriasis. But that does not account for the fact that the same symptoms showed up in Europe directly following H1N1 inoculations.
The most common link so far seems to be that a flu virus is potentially involved meaning there should be more answers forthcoming from the government health agencies, but they are not. This is why the citizens of this area are in an uproar with their government—and rightfully so. There just seems to be a national inertia when it comes to the population in the area of northern Uganda. The government in an election year makes all kinds of promises, and in the case of northern Uganda they have promised medical centers to open to treat these children. This just recently happened with children beginning to receive anti-seizure medication, but that is pretty much all they receive. The general consensus in Uganda is this is all too little, too late, especially for the children who are currently afflicted, or have died.
Grace answered me in an email about this disease, saying: “I heard about the disease. My village is among the affected areas. This is pure negligence on the government side. Perhaps they are tired of people of northern Uganda. It is sad.”
Then I asked her if by chance this might have been done as part of a vaccine trial, one where the government allowed drug companies access to their population, perhaps with payments going straight to the government (pure conjecture on my part). Her response again unsettling: “The Ugandan government has always allowed pharmaceutical companies to use its population for trials including HIV drug trials. This is well known in the government although I don't know that the population is informed about the trials.”
The truth is we don’t know what is causing ‘nodding’ disease in children in Africa. But what we do know is this area is ripe for the population to be used as pharmaceutical guinea pigs, with a government that at best is either incompetent or duplicitous in the saga. The ongoing dispute on this disorder is waking a lot of people up to how universally a health program can potentially run out of control. . .with children being the ones to be hurt the most.
Mary Romaniec's son Daniel was diagnosed with autism she soon learned how little the medical community understood about this disorder. Driven by a sense of urgency Mary began long nights of researching the internet, speaking with other parents and attending conferences that discussed ways to treat autism. Treat autism? Yes, the common notion given by the established medical community is that autism is not treatable. Meanwhile a legion of parents has discovered how wrong the medical community has been on this subject. Contrary to the wide-spread myth that children cannot be treated successfully for autism, Mary Romaniec, was able to unlock the door that lead to her son losing his autism diagnosis and declared recovered by the age of four. Visit her website at MaryRomaniec.com.