The Guinea Worm, President Carter and Me

In September 2001, just days before 9/11, I arrived in Pissila, Burkina Faso for my Peace Corps assignment. I was eager to get to work helping my new home community do surveillance for a neglected tropical disease (NTD) called dracunculiasis, or Guinea worm disease.

As a Peace Corps Volunteer in rural Burkina Faso, I biked from village to village, asking community members if they were aware of anyone with Guinea worm disease, an infection that has impacted both humans and animals since ancient times. Thanks, in part, to the work of volunteers before me, I never actually saw a person with Guinea worm disease during my two years as a volunteer. Burkina Faso was on the brink of eliminating the disease, and I remember thinking that the children in my community would never know the word for Guinea worm in their language, Moorè; it would not be in their vocabulary because they would never have to worry about it. I’ve reflected on that more than once during my career in public health. Knowing that we are truly making diseases history has been the drive underlying my efforts for the last two decades.

Guinea worm disease, as the name suggests, is caused by a parasitic worm. There is no vaccine to prevent it or drug to treat it. Guinea worm is found in communities without access to safe water, where the organism exists invisible to the human eye, often in stagnant water. Once a person ingests contaminated water, the male and female worms grow and mate; after about one year, the mature female causes painful ulcers in the skin, through which it seeks to exit the body. Removal of the worm can be slow and disabling, often accompanied by fever, swelling, and great discomfort, and causing secondary bacterial infections, which can leave an individual disabled for weeks, months, or even permanently. Ending Guinea worm disease transmission requires rapid case detection and management, and, ideally, safe drinking water sources in all endemic communities. In 2022, there were only 13 human cases of Guinea worm disease worldwide, the lowest level ever recorded; the global burden is a minute fraction of what it was when the global eradication campaign began in the 1980s.

At the start of my Peace Corps service, the U.S. ambassador to Burkina Faso at the time, Jimmy Kolker, inspired us by laying out the significance of the health story we were stepping into, one that many of our fellow Americans would not comprehend, but something we Volunteers, and our country could take great pride in. He reminded us of the import of our decision to leave home, serve our country at the invitation of the government of Burkina Faso, and endeavor to end a disease that most Americans would never hear of. From his perspective, we had made the difficult, yet correct choice and in doing so had changed our own lives forever.

Having an ambassador committed to health cooperation as a US national interest and believing in the work that Peace Corps volunteers were undertaking was invaluable in bolstering our spirits. In 2001, Ambassador Kolker joined us in Ouagadougou, taking part in the conclusion of a multi-day bike-a-thon across the country to raise awareness about HIV/AIDS. He and the then Vermont Governor Dr. Howard Dean proudly wore the Peace Corps bikeathon t-shirts as Burkina hosted the 12^th International Conference on AIDS and Sexually Transmitted Infections in Africa that year.

It gave us volunteers a thrill, seeing a U.S. ambassador, unafraid to get sweaty and dusty, biking alongside us. His interest and involvement in our work – from HIV/AIDS to NTDs and more – helped get the attention of his counterparts in Burkina Faso’s government and his U.S. embassy colleagues. It sent a message about what the U.S. valued.

It underscored that global health cooperation and progress in alleviating suffering from disease advance U.S. interests. The skill that diplomats bring to these endeavors, when coupled with the community-level work of development actors like Peace Corps volunteers, can bring about positive changes that also support U.S. prosperity and security. While I didn’t understand it as such at the time, this was health diplomacy in action.

Burkina Faso saw its last case of Guinea worm disease in 2006. By that time, I was back in the U.S. working at The Carter Center in Atlanta, Georgia, where I spent my early career years. Started by former U.S. President Jimmy Carter and his wife Rosalynn, the Center adopted eradicating Guinea worm as one of its primary goals. Its efforts bring global attention to this disease and secure collaboration and action on it, as well as on other NTDs. These health diplomacy efforts are paying off. Globally, Guinea worm is slated to become the second human disease ever fully eradicated, after smallpox.

I’m not embarrassed to share that I was born during the Carter administration.  Back in the late 1970s, my parents could not have known the impact that President Carter’s post-presidential legacy would have on my own career, or his personal impact on global health.

To understand President Carter’s legacy, it’s important to highlight the value of health cooperation in bilateral relations. This is perhaps most acutely demonstrated by the ceasefire he helped negotiate in Sudan in 1995, allowing health workers to access communities in southern Sudan and provide interventions for Guinea worm. The roughly six-month pause in violence allowed the Carter Center to support the efforts of the fledgling health service to deliver supplies for prevention of Guinea worm transmission, as well as essential immunizations and interventions for other NTDs. The health and humanitarian cease-fire was truly one of a kind.

President Carter’s life and diplomatic efforts have continued for decades; he recognizes the power that his presence and diplomatic skills can lend to these issues. He has travelled extensively supporting NTD efforts, spending his time in the halls of power in the capital cities, and walking humbly door to door in communities, passing by people’s homes and shaking hands with essential health workers. Even in recent years, he has continued to lend his voice in meaningful ways, recording video messages and sending written statements of support.

In the realm of international development, NTDs are neglected on the global health agenda and are present in neglected communities, especially those without access to clean water and reliable health services. They represent a set of 20 diseases as defined by the World Health Organization that are spread by a variety of pathogens and vectors like mosquitoes and flies. They can cause disability, disfigurement and social stigma, impacting the lives and livelihoods of people around the world. They are a barrier to social and economic development in low- and middle-income countries and contribute to weaker global public health. NTDs are specifically targeted in the United Nations Sustainable Development Goals under Target 3.3, “By 2030, end the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases…”.  Indeed, ending NTDs contributes to the achievement of nearly every single development goal, as we seek to leave no one behind, providing access to water, education, health services, and ending poverty.

Over the last decade, many countries have made incredible progress in determining the burden of disease and scaling up interventions to communities at risk. This progress has been powered by strong national leadership, the support of donors, including the U.S. government, which is at the forefront of NTD efforts, and donations of safe, effective medicines from pharmaceutical partners, including Pfizer, Merck, and Johnson & Johnson. Globally, 47 countries have eliminated at least one NTD, and many more are on the verge of this milestone. This is truly public health history in action, and I love being a part of it.

In my current role at RTI International, I lead the U.S. Agency for International Development (USAID)’s Act to End NTDs | East program, a global flagship project that partners with governments and communities to control and eliminate NTDs in 13 countries across Africa, Asia, and the Americas. Since 2006, USAID has delivered 3 billion NTD treatments across 26 countries, leveraging more than $28 billion in donated medicine. More than a dozen USAID-supported countries are now on track to eliminate at least one NTD in the next five years. The progress is remarkable.

While great progress has been made, the global community still has a long way to go before NTDs are gone for good. More than 1.7 billion people are still at risk of getting an NTD, yet many people have never heard of them. One of the biggest challenges for NTD work is sustaining funding and attention, particularly in the era of COVID-19 and other global health security concerns. Public health needs are rising, budgets are limited, and health workers are stretched. I’ve seen throughout my career that ministry of health NTD program managers are talented technicians and have a vision to achieve NTD elimination, even if the resources are not yet committed.

Health diplomacy can help. By listening to and supporting the work of these technicians, U.S. diplomats can help advance progress on NTD elimination. Their diplomatic efforts can influence country ownership and budgeting of NTD efforts, send a message that NTD elimination matters to the U.S., and bolster the work of local health workers and communities, distributing medicine, checking for infections, and providing care to the afflicted.

NTD elimination deserves a spot on the agendas of diplomats in countries engaged in ending these diseases. It is a win for the U.S. as much as it is a win for the endemic countries and their citizens. Stronger and healthier communities make stronger and healthier countries.

On my office bookcase – the backdrop of many virtual meetings these past few years – is a vial with a Guinea worm in it, a worm that came out of a human body. It’s a reminder of how far we’ve come, and what we have left to do. The history of NTDs is being written and ending these diseases in our lifetime is a real possibility.

Health diplomacy – from suit and tie diplomats in the halls of power advocating for health cooperation to ambassadors traveling to see health programs in action – is a key to maintaining a focus on eliminating NTDs and writing the final chapters in this incredible public health story.

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Lisa Rotondo is a global public health expert, based in Washington DC and leading RTI International’s Malaria and Neglected Tropical Disease portfolio.  She has worked for more than 20 years with ministries of health, the World Health Organization, the private sector, and non-governmental organizations to lead, implement, and advocate for ending disease around the world. She currently leads USAID’s Act to End NTDs | East program, an 8-year global flagship supporting countries in Africa, Asia, and the Americas to address NTDs.  She worked as deputy director for the Task Force for Global Health’s International Trachoma Initiative and in various roles for The Carter Center’s NTD programs, including focusing on Guinea worm eradication in Burkina Faso.  She was a U.S. Peace Corps volunteer in Burkina Faso from 2001-2003.