Forgotten Disease of Forgotten People
Parasitologist Pat Lammie was strolling down a street in Leogane, Haiti, when the sight of a man walking toward him forever changed the way he viewed the parasite that causes lymphatic filariasis (LF). The man’s limbs and feet were tortuously swollen and disfigured, and he laboriously forced his way forward, step by step, as he moved slowly down the road. Although Lammie couldn’t see the man’s face, he knew him at once. “It was Antoine, someone I’d known for years because of my work in Leogane. The impact of the disease on his everyday life didn’t really hit me until then,” recalls Lammie, an adjunct faculty member at the Rollins School of Public Health (RSPH) and a section chief in the Division of Parasitic Diseases at the Centers for Disease Control and Prevention (CDC). “No matter how many times you see pictures of people with LF or see them sitting in a clinic, you don’t realize how this disease destroys lives until you see a patient trying to function in their own environment.” RSPH is now a pivotal partner in a worldwide effort to wipe this nightmarish tropical disease off the face of the earth. The Bill & Melinda Gates Foundation recently awarded the RSPH Lymphatic Filariasis Support Center $4 million to help fight LF over the next five years. Health economist Anne Haddix established the center last year when she came to RSPH as associate professor of international health. Well-known infectious disease scientist Eric Ottesen, MD, former head of the Lymphatic Filariasis Elimination Program at the World Health Organization, became director of the RSPH center in August 2001.
The funding is part of a $20 million grant to support the Global Alliance for the Elimination of Lymphatic Filariasis, a coalition founded in l997 with more than 35 public and private partners. Working with The Carter Center and the CDC, the LF Support Center will help monitor demonstration projects in afflicted countries to define the most effective ways to rid endemic countries of the LF parasite. The disease is a global scourge—found in more than 80 countries, the highest prevalence in India and throughout sub-Saharan Africa. It is also found in the Americas, in places like Brazil, Guyana, Costa Rica, Haiti, and the Dominican Republic. LF was last seen on US soil in the 1930s near Charleston, South Carolina, and among soldiers returning from the South Pacific after World War II. The western world knows little about LF and its tremendous impact on the developing world. “It is a forgotten disease of forgotten people,” says Frank Richards, an RSPH adjunct faculty member who heads The Carter Center’s LF Program. “But the numbers of people in the world suffering from this disease are staggering.” According to WHO, 120 million people suffer from LF, and another billion are at risk. After malaria, it is the second leading cause of permanent disability in the world.
Pain and Poverty Grotesquely disfiguring and painful, LF is caused principally by the parasitic worm Wuchereria bancrofti. It is transmitted by mosquitoes that carry the parasite’s larvae from one person to the next. Children become infected when very young, although symptoms from damage to the lymphatic system usually do not appear until adulthood. Then fluid accumulates in arms, legs, breasts, and genitals, swelling them so massively they appear ready to burst. Skin thickens over time with hard, wood-like knobby growths resembling the hide of an elephant, giving the disease its common name—elephantiasis. In some villages, more than half of the males with LF suffer from hydrocoele—fluid-filled scrotums so swollen they can reach to the knees, making a normal social and sexual life impossible. Inefficient lymph glands leave patients vulnerable to bacterial infections in affected limbs, inflaming skin, lymph nodes, and lymphatic vessels, causing severe pain and fever. The physical symptoms of LF are indeed horrendous, but the economic and psychosocial impacts can be equally devastating. A disease of the poor, it undermines economic opportunity and destroys hope.
Although the parasite inflicts irreversible damages, LF is one of a handful of diseases possible to eradicate. New blood tests easily identify those infected but not yet sick from filarial infections, so preventive care can start early—good hygiene using soap and water, elevating affected limbs, and exercises can prevent painful acute episodes, secondary infections, and some swelling.
“These drugs don’t need refrigeration. They are very stable and safe. Given just once or twice a year, they can have a major impact on people’s lives,” Richards explains. “We cannot say to people in areas where LF is endemic that taking these medicines will keep them from getting a swollen leg or genitals. They are not completely curative and probably not preventive in a person who already has the infection. But the treatments can stop repopulation of the worm in a given community. They can keep the children from getting infected.” A Global Onslaught Figuring out how best to distribute these wonder drugs in diverse communities with LF is the quest of health economist and LF Support Center founder Anne Haddix. “It is amazing how much we are still learning about LF,” says Haddix. “We are planning some careful evaluations to look at the unresolved scientific issues. For example, we know you need to treat people for the lifespan of the worms, but we don’t know exactly how long the adult worms live. And we need to find out what percentage of the community has to take the drug before you can really interrupt transmission of the disease. We also need to determine how best to deliver the drugs—in salt fortified with DEC or as a single dose in tablet form once a year?” The Gates grant is funding nine demonstration projects—in several African nations, the Dominican Republic, Guyana, Vietnam, and India—to help answer these and other research questions. The RSPH LF Support Center will directly administer projects in Guyana and the Dominican Republic and will evaluate others carried out by the countries’ ministries of health in collaboration with the WHO, CDC, and several other organizations including The Carter Center, Interchurch Medical Assistance, and Health and Development International. “We will look first at pilot projects in small areas, evaluating them to be sure they work before going to a full-scale program in an entire country,” explains Haddix. “Certain areas have different approaches. For example, the project in India is specifically looking at the social mobilization component to see how that can increase medication coverage rates.” The challenge in some countries is convincing health officials to admit the disease is a problem. “I have worked with the ministry of health in Guyana several years to help them get a handle on the extent of their LF problem,” Lammie says. “But the physician in charge of their program found it hard to believe that the disease still existed there.” When Lammie had 100 children tested for LF at a school within sight of the ministry, almost half were infected. Health officials could no longer deny the problem. “It drove home the point that many children in Guyana were at risk of developing elephantiasis because they already had the parasite in the bloodstream. And on a practical level, one of the great things about the LF program is that albendazole rids children of intestinal parasites as well as the parasite that causes lymphatic filariasis. Children who are treated begin to grow and thrive. These more immediate benefits convince local health officials to support our programs.”
Is Eradication Possible? We know LF can be eliminated because it’s been done before in some places,” Haddix says. “China did it beginning in the 1950s because the disease had such an impact on agricultural productivity. They treated 320 million people over 40 years, but they were successful. And although it was never prevalent here, LF went away by itself in places like South Carolina when communities improved sanitation and housing.” Richards is also optimistic. “We have an opportunity through this partnership to work with communities and industry, as well as government, financial, and nongovernmental organizations to make a real impact,” he says. “This disease can be eradicated, and it will be—because it is the right thing to do.”
Sherry Baker is director of public relations for the Emory Heart Center.
Photos courtesy
of the World Health Organization, TDR Image Library, photographer Andy
Crump. Also see: Eradicable differences Interview with Eric Ottesen, MD, director of the RSPH Lymphatic Filariasis Support Center.
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