NEGLECTED TROPICAL DISEASES
This story was first written for the Deseret News.
At this point, to anyone following the headlines, the Zika virus feels like a full-blown pandemic.
And in some ways it is. The mosquito-borne virus has rapidly spread across the Americas, caused infections in more than 26 countries and led to an emergency meeting earlier this month in which the World Health Organization declared the outbreak a "public-health emergency of international concern."
While trying not to stoke fears, President Obama requested more than $1.8 billion from Congress to combat the Zika virus this week. The funding would expand mosquito-control programs and boost vaccine research.
The Zika virus is just one of many diseases that health experts call Neglected Tropical Diseases (NTDs) that are found predominantly in poor communities and affect more than 1.5 billion people around the world. Despite causing immense disability, NTDs are not generally fatal so they are often neglected by the health community. Though there’s no immediate treatment for the Zika virus, many NTDs are treatable and progress is being made against them. Still, NTDs like the Zika virus and others pose a threat to the U.S.
Schistosomiasis is a parasitic NTD, more commonly known as Bilharzia, that causes internal organ damage and is found in tropical fresh water around the world. Left untreated, it causes malnutrition and can be fatal.
Boniface Opinya is a young fisherman who says his life depends on Lake Victoria, where schistosomiasis is common. Every morning Opinya pushes his bright green boat into the lake and spends his day in and out of the water hauling in his nets catching tilapia and Nile perch even though he knows it’s making him sick.
“Lake Victoria water — we interact with so many diseases inside there. We know that we get diseases there but there's nothing we can do,” Opinya says in a video for End Fund, a nonprofit working to eliminate NTDs around the world. "I lost three of my friends because they didn't know they were suffering from Bilharzia."
Opinya describes the symptoms of Bilharzia after it ravaged his small village. “You feel that you are tired,” he says, adding that other symtpoms include a headache and fever. “The stomach swells. People will have thin legs, hands that are very thin and the stomach is coming out as if he’s pregnant.” Stomach bloating and internal organ damage can result from the parasite's eggs getting trapped in body tissue.
Bilharzia is the most deadly of all NTDs, killing close to 300,000 people a year in Africa alone, according to the Centers for Disease Control and Prevention. But generally, NTDs are not very deadly compared to more well-known diseases like malaria, HIV or tuberculosis, which is one of the reasons why they’re neglected by the global health community.
Ellen Agler, the CEO of the End Fund, says that because NTDs are less deadly they receive less than 1 percent of the global health budget. However, she thinks the deadliness of NTDs is underestimated. “NTDs cause more disability than mortality, but still it’s estimated that 500,000 people die per year from NTDs. Malaria causes about 490,000 deaths per year, so when you think about it, NTDs really should be in the same category as malaria in terms of mortality.”
The global health community focuses on five main NTDs including intestinal warms and bilharzia.
Stephanie Palmer, a program manager for integrated control of NTDs at Helen Keller International, a global health nonprofit, says that people who regularly work around water face a particularly high risk for this specific NTD, but in general NTDs hit poor communities without clean water the hardest. “These are poor people living in difficult circumstances and the diseases are making them even less productive and that drives them deeper into poverty. It’s a vicious cycle.”
Once treatment was provided to Opinya's village, people began to feel better right away. “That medicine helped so many people here,” says Opinya. “I can tell you — people changed. The stomachs just started going down, down and back to the normal size.” In most areas a single pill taken annually is enough to treat Bilharzia.
Opinya says the yearly treatment is very important to his community because without any other job opportunities he has no choice but to go fishing in the lake, even though he knows the parasite is in the water. “There's no way that I can prevent myself from going there. If I stopped going to the lake, then I’d become a thief. I’d have to start robbing people in the village.”
People aren’t always so eager to receive treatment. “You know, you would think it would be simple to go into a community and give someone a pill and they would take it,” says Palmer. “But it’s not that simple.” There are two major hurdles when it comes to administering drugs to treat Schistosomiasis. The first is trust. “They might not trust the person or know what the drug is.”
"The second challenge is people not being at home. When a distributer comes to a community to distribute the drug, there are a bunch of people who, for whatever reason, aren’t around and often the person administering the drug only comes around once, so if you’re not there then you don’t get treated.”
Though funding lags dramatically behind the need, treating NTDs is not nearly as expensive as treating other diseases. “The other thing on NTDs to remember that the treatments for bigger diseases, like malaria, are a lot more expensive than treating NTDs,” says Agler. “For the five most prevalent NTDs, the medicines to treat them are being donated by the drug companies. The real gap in funding is for delivery rather than for the medicines themselves.”
And the payoff for treating NTDs can be significant. Experts say keeping kids healthy helps keep them in school and better community health can spur economic growth. According to a 2012 WHO report, every dollar invested in fighting NTDs brings a return on investment of more than $50.
Failing to deal with NTDs in places like Africa could be dangerous for public health in the U.S. Experts say a key to keeping disease outbreaks under control is by building strong global networks between national health programs. Whether it’s Zika or another NTD, the key is working together. “NTDs were something that was considered as off the radar before but more and more we are realizing that we are always connected,” says Agler. “We saw this with ebola, we need to work as a global network.”
Indeed, with the spread of the Zika virus, the threat of NTDs in the U.S. has already made headlines. But Zika is not the only NTD in North America. Dr. Peter Hotez, of the National School of Tropical Medicine at Baylor College, says already in the U.S. he estimates “there are 12 million people living with neglected tropical diseases mostly in the poor areas of the Southern U.S., especially along the Gulf Coast.” He says high levels of poverty, combined with the effects of climate change, have allowed parasites and mosquito-borne diseases to move into the Southern U.S.
Agler, who has been known to bring vials of parasitic worms to dinner parties, believes this is an issue that everyone can agree on, they just need to learn about it. “People can really rally around the end to these diseases that bring so much suffering to the world. 1.5 billion people suffering from NTDs is something that everyone should care about.”