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A Catalyst for Disease Elimination and Eradication
HDI (Health & Development International) is a non-governmental not-for-profit organization incorporated in the United States with offices there and a small secretariat in Norway, dedicated to help to eradicate or at least eliminate diseases that can for all intents and purposes be eliminated. HDI’s current focus diseases are preventing women from bleeding to death when they give birth (preventing PPH mortality), preventing obstetric fistula, preventing and eliminating “Neglected Tropical Diseases (NTDs) including lymphatic filariasis (causes “elephantiasis”), and eradicating dracunculiasis, or Guinea worm disease. While this sounds like a pretty wild mix, all of these have really key aspects in common!
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 28 years, HDI’s role has evolved from serving as a European bilateral liaison to being a catalyst when bottlenecks occur and opportunities present themselves for quicker, more nimble action than large organizations can consider. Dr. Jacquie Kay, former president of HDI’s board summarized HDI’s approach, “We are ‘putting our finger in the dike’ as threatening leaks are discovered, in critical places where our modest size allows quick response.” Since 1997, HDI has also been helping to get the ball rolling on important diseases that few were addressing when we started.
HDI’s Innovative Approach
HDI has distinct approaches, often different from others involved in the diseases we work on. Facilitating 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 are keys we use in freeing populations from these devastating diseases. The following examples illustrate HDI’s unique and critical niche in the elimination and eradication efforts.
Fortuitously, The Global Campaign to End Fistula commenced the same month in 2003 as HDI learned of obstetric fistula from Ambassador Barbro Owens Kirkpatrick who had seen its horrors first hand while serving as US ambassador to Niger. While the Campaign has focused primarily on improving the woefully inadequate access to surgical treatment for those already afflicted by obstetric fistula, the HDI focus has been prevention, striving to dry up this river of suffering.
Having proven that obstetric fistula and deaths from obstructed labor can be eliminated by large, even universally illiterate populations through a community-based approach that ended up also reducing all-cause birth related mortality by over 70%, HDI began testing a modified approach in a population of millions across African areas the size of South Korea in 2018.
Preventing women from bleeding to death when they give birth
When women stopped dying of much else but kept bleeding to death where obstetric fistula was being prevented, we started seeing what we could do to address that problem too. Given the efficacy of even our sub-optimal approach and additional knowledge we gained in 2012, HDI and Niger’s Ministry of Health designed a nationwide Initiative to Prevent Women From Bleeding to Death When They Give Birth, in other words an Initiative to Prevent PPH (Post Partum Hemorrhage) Mortality.
The Niger Approach looks to be successful in its enormously ambitious goal; Niger is striving to halve the proportion of women who die of bleeding at childbirth. It looks like they are doing just that. In fact, other African countries are starting to “Look to Niger”, seeking to replicate Niger’s success.
As with all the issues mentioned in this Case for Supporting HDI, more about our work on preventing PPH mortality in very large populations is presented in the Projects section of the website.
Guinea worm disease and lymphatic filariasis
Initially, HDI focused its work on these two diseases because both are theoretically eradicable and both incapacitate victims so they are unable to work, attend school, care for children, or harvest their crops, causing degrading forms of suffering and indignity to 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 (ed).
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 and the two where it is still found (Chad and Ethiopia in 2018). HDI also operates the globally available Guinea worm cash reward system for countries with few or no cases remaining. For lymphatic filariasis, HDI has combined global initiatives with country support in Togo, Ghana, and the Dominican Republic. We helped Togo from start to finish, when it in 2017 was verified by WHO as the first country in Africa to have eliminated LF. In addition, HDI and the partner organizations rely heavily on local health workers in these 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 by drinking water contaminated with water-fleas carrying infective larvae. A 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, larvae are released in the water where an intermediate host, a small crustacean “water flee “known as a Cyclops, begins the cycle anew. In 1986, more than 3.2 million people in 22 countries of Africa and Asia were afflicted. In 2017, 30 cases remained in 2 countries, Chad and Ethiopia. Even South Sudan where a war of liberation and then tragically persistent conflict made interventions difficult had stopped transmission. Guinea worm is being successfully eradicated by combining the distribution of water filters, health education, water treatment with chemicals, advocacy for providing clean water, and case containment.
Lymphatic filariasisis is 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 were infected with lymphatic filariasis, and an estimated one billion people were at risk when this work started in 1997.
Lymphatic filariasis is prevented in Africa with a combination of Mectizan and albendazole, drugs donated to the program by Merck and GlaxoSmithKline, respectively. 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. Surgery is provided to men who experience (sometimes huge, incapacitating) accumulation of fluid in the scrotum, afflicting 25% of men in some communities.
Sudan pipe filter project
Because the civil war in Sudan hampered reporting and interventions, that country represented one of the most significant challenges to the eradication of Guinea worm. Even with sporadic reporting, Sudan accounted for more than 75 percent of all reported cases remaining in the world, although the actual figure was undoubtedly much higher. Public health workers estimated that nine million individuals in South Sudan were at risk for Guinea worm disease. As a result of the conflict and the number of displaced and nomadic persons, delivering a filter cloth to every household and of ensuring use of the filters was 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 for the entire at-risk population. HDI recruited Norsk Hydro, a Norwegian-based manufacturer which at the time also made PVC. Norsk Hydro and its individual employees contributed over 1,640 kilometres of tubing with a value of 1.75 million Norwegian Kroner (US$195,000), enough tubing to reach from Washington to Minneapolis, or from their factory in Norway to Milan in Italy. The nine million pipe filters consisted of consisted of tubing 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 a tool originated by the World Health Organization (WHO) in its successful effort to eradicate smallpox, HDI introduced Guinea worm rewards in 1993 and will funds the program to the end. Under the rewards system, an individual who reports a confirmed case of Guinea worm receives a monetary reward, as do patients who cooperate to ensure 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 needing intervention. The reward program operates in all endemic or formerly endemic countries 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 existed 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, the lead organization for Guinea worm eradication in Africa, which agreed to provide administrative support. HDI funded skilled consultants to work in these countries while The Carter Center, working with the Centers for Disease Control (CDC), usually dealt with the administrative aspects of hiring them, such as contracts, travel, and lodging, until Carter Center eventually received large enough grants and/or Guinea worm had been eliminated there.
In 1997, HDI sponsored and coordinated a Global Policy Retreat for Lymphatic Filariasis (LF) Elimination, which representatives from WHO, NGOs, endemic countries, bilateral government donor agencies, 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 thus became the first disease 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 decided to work at the local level on lymphatic filariasis elimination in Togo and Ghana. We chose those two because of their shared border and because one is francophone and the other is anglophone. In retrospect, an oversight 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. After a few years of HDI support helped them demonstrate resolve and progress, Ghana secured longer-term funding from Great Britain. In Togo, HDI provided funding for LF test materials, staff per diems, fuel, and training sessions for healthcare staff, as well as supporting establishment of their national LF Elimination secretariat. This enabled Togo to complete mapping activities, conduct its first mass treatments, become the first country in Africa, if not the world, to have trained doctors nationwide in the alleviation of lymphatic filariasis suffering, and eventually become the first country in Africa to completely eliminate this awful disease. Every child born in Togo since at least 2009 has had no risk of ever contracting lymphatic filariasis. HDI has been able to successfully encourage “south to south” exchanges, including the assistance of a world experts from Ghana on lymphatic filariasis to Togo.
HDI’s organizational needs
What HDI is helping others to achieve for their own populations is only possible thanks to steadfast support from donors large and small, especially foundations and individuals who support our work year after year. The examples outlined above are merely illustrative of HDI’s role in the fight to prevent indignity, socio-economic catastrophe, and suffering among millions by eliminating or even eradicating particular diseases.
The organization provides crucial services to partner organizations, as well as to the beneficiary countries. While some partner organizations focus on the macro issues, HDI frequently contributes by identifying gaps in the efforts and addressing them with creative, simple, very practical solutions. 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 that 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, and expertise from Niger to Nigeria and Togo on preventing PPH mortality and obstetric fistula.
HDI has been able to operate year after year with a relatively small annual budget of between $200,000 and $600,000 if one excludes the 2009-2018 Togo-specific “Integrated Control of Neglected Tropical Diseases” USAID-funded project which included Mass Drug Administration of three medications in five combinations (about 6.5 million doses each year) for over 3 million people. Outside of that Togo-specific USAID-funded project, headquarters functions are largely pro bono. This explains why HDI has overhead costs that are typically below 10% and have been as low as 2% of grant funding, mostly for office rent, utilities, and travel costs. The bulk of the budget is for program services.
The annual budget varies based on the opportunities that exist in a given year. Although some funding needs 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. That “broke the bank,” more than emptying our “emergency reserve” funding pool. But it became necessary in order for that highly beneficial intervention to happen after two years of preparatory work to build the implementing coalition.
An increasing number of dedicated supporters provide wonderfully appreciated funding that is making HDI’s achievements and those of the afflicted populations possible.
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 governments in developing countries and larger organizations such as the CDC, major NGOs, and UN agencies. HDI frequently fills a need, which is acknowledged by the larger organizations, and which others are sometimes unable to fill because of their larger size or more cumbersome decision-making processes.
We hope you agree that success needs to be supported. HDI very much needs your support, as individuals, foundations, corporations, and “donor governments” for the work we do to protect the lives and dignity of women in particular, and thus also protect their children and benefit whole families and communities.