Sleeping Sickness: A Neglected Epidemic

Sometimes, epidemics don’t make headlines. That seems strange, a major health risk causing death to ripple through communities, and yet we’re more likely to hear about whats happening with the Kardashians. However, one reason why these epidemics don’t make the news: they strike isolated, poor regions of the world. They pose little risk to rich, foreign regions.
Sleeping sickness or Trypanosomiasis has been labeled a neglected infectious tropical disease by the World Health Organization (WHO) due to the lack of treatment progress in over half a century. The affected populations tend to be  remote and isolated in Sub-Saharan Africa, only encompassing small tribes and villages which are not connected by roads. The sparse infrastructure make these populations difficult to be reached by doctors, and unsuitable for housing hospitals as people wouldn’t be able to reach them. There is not much funding for drug research because pharmaceutical companies make drugs that will be profitable, and since these regions are incredibly poor, the drugs will not be profitable.  There are not big donors because people tend to care about diseases because it effects their family, friends, or community, not population they’ve never encountered or heard of. There is not much clinical attention expended on these diseases, no wealthy donors to fund the campaign or research institutes to head the efforts. This is how diseases get left behind, forgotten, and spread, fatally. 

What is Sleeping Sickness?

Trypanosomiasis or sleeping sickness is caused by a small parasite that is spread by tsetse fly bites. The first symptoms include fever, headaches, joint pain, and itching; symptoms that often go unnoticed or unaddressed for the underlying cause. However, once the parasite begins to effect the central nerve system, it disrupts sleep, causes brain damage, paralysis, tics, and eventually results in death. While the disease can be cured with medicine, because it effects rural parts of Sub-Saharan Africa, it often goes undiagnosed.  If it is not treated, it is fatal.

The History of Treatment

When sleeping sickness made a comeback in yet another epidemic In the 1990s, the WHO responded by making it a goal to eradicate sleeping sickness by 2020, a challenge that seemed quite ambitious at the time. The disease had not had any updates in treatment or diagnosis in 50 years.
After a major epidemic in the 1920s and 30s, progress had been made in treating the disease such that it had nearly been eradicated. After this period they lowered the rate of disease drastically with better infrastructure and enforced policies. For example, after the DRC’s independence from colonization in the 1960s, efforts had been mostly abandoned in the chaos of the new governments as the screenings became less rigidly enforced and infection rates began to rise once again. Rates peaked with over 25,000 diagnoses cases in another epidemic in  the 1990s when Belgian aid ceased and treatment was left to the state.
In 1999, MSF made a push for neglected diseases, creating the Drugs for Neglected Diseases Initiative, DNDI, with the prize money they had won with the Nobel Peace Prize that year. This initiative encompassed sleeping sickness, and the effort was not in vain. In 2009, DNDI made a break through, developing a combination therapy treatment called NECT which was the first development in 60 years. This was a big step up from the previous arsenic based drug which killed 1 in 20 people that were injected. Now, they are releasing yet another upgrade called fexinidazole, this time lighter and easier to administer in response to the logistical difficulties surrounding the previous option.

Why is the disease so hard to address?

The logistical complications are multifaceted. How do you get knowledgeable doctors to the patients for tests? How do they bring their medical equipment? How do they have enough light or electricity to carry out proceedings? How do they store medicines that need to be kept cold during a hot day in the African sun? How do they bring the heavy bottles of infusions needed for each patient’s treatment? All of these logistical questions are crucial. They effect whether or not these population have medical teams equipped to handle their needs.

MSF doctors in the DRC

An episode of ’The Cure’ by Al Jazeera English follows doctors from the MSF into the remote areas of North Eastern Democratic Republic of of Congo (DRC) to test the villages and people for the disease and deliver them treatment if needed. ‘Villages’ though doesn’t quite describe the remoteness of the effected populations. Vast forests stretch in every direction without any roads or paths for vehicles.  This makes it very hard for them to reach doctors and it doesn’t provide access for the traditional car or boat.
 The MSF doctors first arrived by chartered plane. Then drivers took them on motor bikes through dense forests, finally spending hours taking a small boat down a river home to hippos. They are loaded with equipment- generators, tables, all the medical equipment, the icebox with medicines that need to be kept cold. Finally, they reach the people who were already loosely scattered along the river bed, small tribes of 90 people had gathered to take a finger prick test to assess their blood for the disease. They perform the exams under limiting circumstances, with sparse equjpment, sometimes with only headlamps for light. It is hard to get the populations to gather in the first place because they don’t know the disease or trust the foreign doctors. They make sure to watch the MSF doctors burn all the equipment at the end of the day to verify they did not come in to get samples to bring back to their labs in Europe and run tests on the tribes.
The people whose disease had already progressed to stage 2 had to leave for another site to get treated for 10 days where there was more supplies. The boxes of infusions and pills for each patients treatment is quite heavy, and they require a knowledgeable medical staff to administer, making it difficult to provide in such remote regions. All of this adds to the risk of the epidemic, as any extra steps in the process of these treatment leaves risk for supplies and treatment get delayed or something to go wrong.

Fexinidazole: a revolutionary treatment option

However, while meeting the 2020 goal seemed to be out of reach: a huge development has drastically improved the likelihood. A new medicine known as fexinidazole has made the prospects much more promising. The treatment consists of just a set of pills, making it much easier to be transported and it does not require medical staff to be administered. This means infected patients do not need to be transported to further medical centres. Additionally, they have created a rapid diagnostic test which screens for the disease more quickly and easily, requiring less medical expertise and equipment. It is now beginning to be approved and used in different countries in the region. In July, the WHO endorsed the medication, calling it a breakthrough innovation. The medication solves not just the medical questions but the logistical problems of treatment. It responds to the specific difficulties of the disease by not needing space and expertise. This is what it takes to stop an epidemic: research and dedication.

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