Little-Known Global Alliance Produces Beautiful Results Against Ugly Disease

News of ambitious efforts to rid the world of scourges like malaria and polio have gained international steam in recent years, but substantial progress is also being made against an ungainly global disease, thanks to a little-recognized initiative to end its horrors.

Lymphatic Filariasis, also known as Elephantiasis, is a disfiguring, debilitating disease that has affected some 120 million people worldwide, with more 40 million of them seriously incapacitated, according to the World Health Organization.

You may never have heard of this tropical disease, or only seen fleeting images of its swollen victims, but “it’s a very big global problem, with hundreds of millions of people affected or at risk,” said Dr. Donald Hopkins, director of health programs at the Carter Center in Atlanta, Ga., which was founded by former President Jimmy Carter and his wife Roselyn to promote peace and fight disease. “It’s grotesque to look at,” Hopkins said, “and causes social and economic problems as well as significant pathology such as kidney damage.”

Lymphatic Filariasis (LF) is caused by parasite, although that doesn’t even begin to describe the damage done by this small worm. Like malaria, LF is transmitted by mosquitoes. Once the parasitic filarial worms get under the skin, its larvae target lymph nodes where the worms mature and spew millions of offspring into the bloodstream. The nodes and vessels of the lymphatic system get clogged with these nest-balls of parasites, which can remain there for years, eventually causing abnormal, often hideous swelling.

In men, for instance, fluid-filled balloon-like sacs can develop on the genitalia, or a woman’s breast or vulva may grow to several times the normal size, or entire legs and arms can become grotesquely enlarged — to the point where the victim becomes immobile and a social outcast. The disease also causes bacterial infections in the skin and lymph system, which in turn hardens and thickens the skin (this is the part called elephantiasis). The result: pain, permanent damage, social stigma, possibly the end of employment and, in too many cases, the end of all normal life.

The disease is present in 80 countries throughout the tropics and sub-tropics of Africa, Asia, the Western Pacific, and parts of the Caribbean and South America.

That’s where the Global Alliance to Eliminate Lymphatic Filariasis (GAELF) comes in. The alliance is an unprecedented public-private partnership that has brought together the World Health Organization (WHO), government health ministries around the world, companies within the private sector, international development agencies and foundations, research and academic in-stitutions, local communities, and nonprofits and NGOs such as the Carter Center and the Bill & Melinda Gates Foundation. Two pharmaceutical companies, GlaxoSmithKline and Merck & Co., have also committed to providing free treatment drugs for the effort, an equally unprecedented commitment that will last as long as it takes to end LF.

Superlatives for the ambitious endeavor abound. WHO calls the program, only eight years old, ‘“the largest drug administration effort the world has even known.” In Egypt alone for example — one of the alliance’s 48 participating nations — 2.5 million people have received drugs every single year for the past five years.

Complete eradication of LF is feasible, which is one reason for the ramped-up global efforts, but it can only be done if you kill the micro offspring worms in the blood and prevent future mosquito transmission — an enormous task. The adult worms, too big to dislodge, stay burrowed in the body for years, and extremely potent pills must be given annually through five or six rounds to kill their offspring parasites. And this all must be done in some of the poorest and least developed countries in the world, which adds to the logistical challenges of eliminating the disease.

Yet thanks to the determination of its members, GAELF has been a global success story. Medical scholars say the alliance has prevented LF in 6.6 million newborns and headed of 4.4 million cases of organ damage. The alliance’s work has also prevented grotesquely swollen scrotums — one of the disease’s more horrifying hallmarks — in 1.4 million men and limbs that resemble those of an elephant in 800,000 cases.

In a scholarly review published in the journal Plos Neglected Tropical Diseases on Oct. 8, experts said GAELF has had an “un-precedented public health impact on both LF and other neglected tropical diseases,” arguing that it “justly deserves the accolade of a ‘best buy’ in global health.”

Participants of the program who work both behind a desk and in the field, such as Hopkins of the Carter Center, are even more passionate: “It’s tremendously cost effective.” Hopkins said, stressing that given the enormous suffering LF causes, to not rally against this disease as fast as we can is simply “absurd.”

Moreover, treatments against LF combat other deadly diseases as well. For instance, the mostly donated drugs used in LF’s massive, nationwide administration programs work against other parasites such as intestinal worms, lice and scabies. In addition, the LF mosquito nets prevent malaria.

Hopkins, a pediatrician, also pointed out that these treatments not only help adults but millions of children, who are especially vulnerable to tropical diseases. And whether young or old, he added that when you lift the health burden of people in the poorest countries, there’s a ripple effect, socially and economically, for everyone. “We don’t have to wait,” he said. “We can do this now.”

Hopkins is an impatient man, according to people who work with him. “He moves fast and talks fast and it’s hard to keep up,” said Emily Staub of the Carter Center.

But that impatience has clearly paid off. Hopkins has become a key figure in the global fight against tropical diseases, with an impressive resume to boot.

A former deputy director and acting director of the Centers for Disease Control and Prevention in the 1980s, Hopkins has been a member of seven U.S delegations to the World Health Assembly and was nominated for a Pulitzer Prize for a book he wrote on smallpox. He’s a member of the Institute of Medicine at the National Academy of Sciences as well as an honorary chief in three tribal areas of Nigeria.

“I got interested in tropical diseases before I went to medical school,” Hopkins said. “I was in Egypt as a student tourist, 19 years old, and I saw trachoma, an eye disease. I didn’t know what it was — but I wanted to do something about it.”

And he did. Hopkins has been with the Carter Center now for 21 years, leading its successful battle against Guinea worm, a parasite that emerges through painful blisters nicknamed “the fiery serpent” in the skin. Once prevalent in 20 nations in Asia and Africa, the disease remains endemic in only five countries in sub-Saharan Africa, and experts are optimistic it can be eliminated altogether in the near future.

Hopkins is hoping to replicate that success with LF, applying his signature impatience to get results. For instance, when the ex-isting LF programs in the Dominican Republic and Haiti weren’t moving fast enough for Hopkins, the Carter Center announced a one-year initiative to accelerate the elimination of malaria and LF by working with both governments on the island, known as Hispaniola.

“Hispaniola is the last reservoir in the Caribbean islands for these two debilitating mosquito-borne diseases, putting the rest of this region at risk,” said former U.S. President Jimmy Carter at the launch. “I hope this project will demonstrate that it is feasible to eliminate malaria and Lymphatic Filariasis.”

To that end, the Carter Center is providing technical assistance and materials such as insecticide-treated bed nets and microscopes, as well beefing up health staff in three targeted communities in Haiti and the Dominican Republic.

The Hispaniola initiative stems from a 2006 recommendation by the Carter Center’s International Task Force for Disease Erad-ication, a group of 12 international infectious disease experts funded by the philanthropic Bill & Melinda Gates Foundation. The task force concluded that eliminating the two parasitic diseases on Hispaniola would not only improve health, but also boost the economy, including the agriculture and tourism sectors.

“I’m very proud of our task force,” Hopkins said. “We were the first international body to say this thing can be eradicated, in 1993, and four years later WHO called for global elimination.”

Other LF hotspots around the world that the Carter Center is targeting include India, Indonesia and parts of Africa, according to Hopkins, who noted that the center has already worked with Nigerian experts and citizens for years in a coordinated battle against tropical diseases such as river blindness and Guinea worm disease.

It’s an alliance that’s clearly paying dividends. One hallmark of the global fight against LF has been its remarkable success in a long list of countries that have either eliminated the disease or are close to doing so. Among these are China — the first country in the world to eliminate LF — Egypt, South Korea, Costa Rica, the Solomon Islands, Trinidad and Tobago, Cape Verde, Suriname, Mauritius, the Seychelles, Comoros, Togo, Sri Lanka and Vanuatu.

Hopkins hopes to add Hispaniola to that list as soon as possible, if not sooner. After all, when it comes to debilitating disease and human suffering, he’s an impatient man.

To Lean More:

For more on the Carter Center: www.cartercenter.org/health/

For more on The Global Alliance to Eliminate Lymphatic Filariasis: www.filariasis.org

For more on the World Health Organization: www.who.int/topics/filariasis/en/

About the Author

Carolyn Cosmos is a contributing writer for The Washington Diplomat.