A Catalyst for Disease Eradication
Health and Development International (HDI) is a non-governmental organization, incorporated in the United States with a small secretariat in Norway and Chicago, dedicated to supporting efforts to eradicate diseases that have been deemed eradicable. HDI’s current focus diseases are dracunculiasis, or Guinea worm disease, and lymphatic filariasis. Dr. Anders Seim, a Norwegian physician, founded HDI in 1990 after he realized that the consortium of organizations working on Guinea worm eradication might benefit from a linkage with the European bilateral donors, which provided 75% of all international aid going to endemic Guinea worm countries.
Over the past decade, HDI’s role has evolved from that of serving as a European bilateral liaison to being a catalyst when bottlenecks occur and when opportunities present themselves for quicker, more nimble action than large organizations can consider. Dr. Jacquie Kay, current president of HDI’s board, summarized HDI’s approach, “We (HDI) are ‘putting our finger in the dike’ as threatening leaks are discovered, in critical places where our modest size allows quick response.”
Focus Diseases: Guinea Worm Disease and Lymphatic Filariasis
HDI decided to focus its work on these two diseases because both are theoretically eradicable and both incapacitate and debilitate victims to the extent that they are unable to work, attend school, care for children, or harvest their crops, degrading the human dignity of affected individuals and their families. HDI and partner organizations are having a significant impact on the quality of life and economic development in the regions where the diseases exist.
Guinea worm occurs in Africa and lymphatic filariasis in Africa, Asia, and Latin America. HDI has contributed to Guinea worm eradication in almost every country where it has recently existed or is currently found, including Benin, Ivory Coast, Togo and Sudan. HDI also operates the globally available Guinea worm cash reward system for countries with just a few cases remaining. For lymphatic filariasis, HDI combines global initiatives with country support in Togo, Ghana, and the Dominican Republic. In addition, HDI and the partner organizations rely heavily on local health workers in their eradication efforts in order to obtain more geographic reach and build indigenous public health education capacity.
Dracunculiasis, or Guinea worm disease, is a parasitic disease that humans contract after drinking water contaminated with water fleas carrying infected larvae. One year after the larvae are ingested, usually during harvest or planting season, one or more worms up to a meter in length work their way to the skin’s surface, causing painful blisters and other symptoms that make productive activity almost impossible. Without public health education, it is difficult to stop the Guinea worm cycle. If an infected person immerses her limb in a community water source to ease the pain, the larvae are released in the water where an “intermediate host,” a small crustacean known as a Cyclops, begins the cycle anew. In 1986, more than 3.2 million people in Africa and Asia were afflicted. In 2002, less than 55,000 cases remained in 13 countries, the great majority in Sudan where the ongoing civil war makes treatment difficult. Guinea worm is being successfully eradicated by combining the distribution of water filters, health education, water treatment with chemicals, advocacy of clean water, and case containment.
Lymphatic filariasisis a parasitic disease transmitted to humans by the bite of infected mosquitoes. It can lead to elephantiasis, a crippling condition in which limbs or other parts of the body are swollen dramatically. More than 120 million people in 83 endemic countries are infected with lymphatic filariasis, and it is estimated that approximately one billion people in these endemic areas are at risk.
Lymphatic filariasis is prevented in Africa with a combination of Mectizan and albendazole, drugs donated to the program by Merck and GlaxoSmithKline, respectively. In Latin America and Asia, a combination of albendazole and diethylcarbamazine (DEC) prevents the disease. The medication is given once a year to entire at-risk populations. After appropriate instruction, meticulous daily hygiene with ordinary soap and water greatly alleviates the symptoms felt by individuals already afflicted with lymphoedema or elephantiasis, and inhibits further progression of the disease.
HDI’s Innovative Approach
HDI distinguishes its work from the other partners involved in eradication of Guinea worm and lymphatic filariasis through facilitation of public health policy decision-making, “south to south” collaboration, regional networking and activities, and creative, low-cost solutions to some of the more difficult problems related to eradicating these devastating diseases. The following examples illustrate HDI’s unique and critical niche in the eradication efforts.
Sudan Pipe Filter Project
Because the ongoing civil war in Sudan hampers reporting and interventions, that country represents one of the most significant challenges to the eradication of Guinea worm. Even with sporadic reporting, Sudan accounts for more than 75 percent of all reported cases remaining in the world, although the actual figure is undoubtedly much higher. Public health workers estimate that nine million individuals in this country are at risk for Guinea worm disease. As a result of the continued conflict in Southern Sudan and the number of displaced and nomadic persons, the task of delivering filter cloth to every endemic household and of ensuring use of the filters is difficult.
In response to this challenge, HDI conceived of the Sudan Pipe Filter Project and created a web of NGOs, corporations, and government organizations to obtain, produce, and distribute over nine million pipe filters to the at risk population. HDI recruited Norsk Hydro, a Norwegian-based manufacturer of PVC, which along with its union contributed over 1,640 kilometers of tubing with a value of 1.75 million Norwegian kroners (US$195,000). This tubing is a key material for the nine million pipe filters, together with filter cloth at one end and a string attached to the same end so each recipient can wear the pipe filter around their neck. The string helps ensure that every drink of water can be easily filtered, even if the individual has holes in their pockets or no clothing at all.
Guinea Worm Rewards
Surveillance of Guinea worm cases represents one of the most important steps toward ensuring containment and an end to the disease’s transmission. Using one of the tools originated by the World Health Organization (WHO) in its efforts to end smallpox, HDI introduced the Guinea worm rewards program in 1993 and still funds the program. Under the rewards system, an individual who reports a confirmed case of Guinea worm in a village receives a monetary reward, as do patients who cooperate to ensure that their case is fully contained. These reports help public health officials target villages for containment efforts. For example, in Yemen, the rewards program helped establish that Guinea worm still existed and identified the areas for containment. The reward program currently operates in all endemic countries except Sudan and Ghana, and represents a critical tool to surveillance and ending transmission.
Guinea Worm Consultants
In September 1997, HDI recognized the need to place public health consultants in middle-endemic countries, such as Togo, Benin, and the Ivory Coast, where Guinea worm cases still exist but not in sufficient numbers for the lead organizations to justify a field representative. HDI realized that without consultant field advisors and their continued help with surveillance and education, the middle-endemic countries could “backslide.” HDI secured funding to hire consultants and partnered with The Carter Center, one of the lead organizations for Guinea worm eradication in Africa, which agreed to provide administrative support. Since then, HDI has regularly funded skilled consultants to work in these countries while The Carter Center, working with the Centers for Disease Control (CDC), has usually dealt with the administrative aspects of hiring them, such as contracts, travel, and lodging.
In 1997, HDI sponsored and coordinated a Global Policy Retreat for Lymphatic Filariasis Elimination, which representatives from WHO, NGOs, endemic countries, bilaterals, universities, and corporations attended, to refine the strategy for ending lymphatic filariasis. In considering the tools available, the participants agreed on a dual-approach program that focuses on 1) alleviation of suffering and 2) ending transmission. This is the first modern eradication effort to focus on the suffering of those afflicted, right from the beginning. In a subsequent 1999 Workshop on Effective and Efficient Drug Distribution for Lymphatic Filariasis Elimination, participants discussed the task of drug distribution, which is made difficult by the nearly inaccessible rural and dense urban locations of many at-risk populations. Again, the HDI-sponsored meeting led to consensus, and participants agreed on principles that are now being followed by the global Lymphatic Filariasis Elimination Program to meet the massive drug distribution challenges.
In addition to the Global Policy Retreat and the Drug Distribution Workshop, HDI also created the first iteration of the brochure called “Lymphatic Filariasis—Ready for Global Elimination”, which was so well received that WHO decided to pay for a reprinting of it, and translation into French. HDI also supported a CDC training video to show local healthcare workers how to treat patients whose lymphatic system has been damaged by lymphatic filariasis. HDI supported the travel of a Brazilian doctor for time-critical script supervision when no other funding was available.
In addition to its global work, HDI also decided to work at the local level on lymphatic filariasis elimination in Togo and Ghana. HDI decided on these two countries because of their shared border and because one is francophone and the other is anglophone. In retrospect, one of the oversights in the early stages of Guinea worm eradication was the nearly exclusive focus by partner organizations on anglophone countries.
HDI’s support provided for the LF Elimination Secretariat in Ghana, making possible the rapid initiation of mass-treatment drug distribution in pilot areas. HDI plans to support the secretariat for another year or two, while it helps the Ghanaians secure longer-term funding. In Togo, HDI has provided funding for LF test materials, staff per diems, fuel, and training sessions for healthcare staff, as well as supporting establishment their national LF Elimination secretariat. This support has enabled the Togolese to complete mapping activities, conduct its first mass treatments, and become the first country in Africa, if not the world, to have trained doctors nationwide in the alleviation of lymphatic filariasis suffering. In 2002, Togo became the first country n Africa to have upscaled its mass drug distribution efforts to include all of its at-risk population. HDI has been able to successfully encourage “south to south” exchanges, including the assistance of a world experts from Ghana on lymphatic filariasis to the Togolese.
HDI’s Organizational Needs
The examples outlined above are merely illustrative of HDI’s role in the fight to eradicate Guinea worm and lymphatic filariasis. The organization provides crucial services to partner organizations, as well as to the beneficiary countries.
While partner organizations focus on the macro issues, HDI frequently contributes by identifying gaps in the efforts and addressing them with creative solutions—such as the conception of the pipe filter project. In addition, HDI advances policy-making discussions by convening meetings at key stages in the eradication process when the larger organizations are consumed with programmatic implementation—such as the lymphatic filariasis Global Policy Retreat, which helped all players agree on key decisions. Finally, HDI encourages south to south collaboration and regional networking as evidenced by the exchange of the lymphatic filariasis expert from Ghana to Togo.
HDI has been able to operate for the last decade with a relatively small annual budget of between $200,000 and $600,000. The budget includes one full-time professional and, when funds are available, one administrative staff member in Norway. From April 2002, we have had a Deputy Executive Director in the States, with special responsibility to help HDI strengthen our board of trustees and broaden our funding base. The other overhead includes the cost associated with running the office in Oslo, minimal office costs in the States, and travel costs. The remainder and, in fact, the bulk of the budget is for program services.
HDI’s administrative expenses were less than 2% of total grant funding in fiscal year 2001-2002.
The annual budget varies based on the opportunities that exist in a given year. Although the funding needs for lymphatic filariasis work in Togo and Ghana are predictable from year to year, HDI frequently needs to cover unanticipated costs. For example, HDI paid in excess of US$150,000 for purchasing and shipping the one ton (nine million pieces) of filter cloth and the nine million meters of string for the Sudan pipe filter project. HDI hopes to secure funding to replace its “emergency reserve” funding pool that was used to cover these expenses.
During the last decade, HDI had a relationship with an individual donor who provided the majority of their core funding. In addition, HDI was able to approach this individual for special needs, such as the expenses associated with the need for guinea worm consultant field advisors, when they arose. Unfortunately, this individual became seriously ill and is no longer able to support HDI’s work, making it urgently necessary to intensify the search for core funding, as well as for programmatic and country-specific needs.
Although HDI is a small organization, its work has a catalytic effect on eradication efforts and it is able to work effectively in tandem with larger organizations such as the CDC, major NGOs, and UN agencies. HDI frequently fills a need, which is acknowledged by the larger organizations, but which others are not able to fulfill because of their larger size or more cumbersome decision-making processes.