One-sixth of the world’s population, 1.4 billion people, suffers from one or more neglected tropical diseases (NTDs), called “neglected” because they traditionally have received less attention than other global health challenges such as AIDS, TB and malaria. NTDs thrive in regions where water quality, sanitation and access to health care are poor, such as remote rural areas, urban slums and conflict zones. While many NTDs are not fatal, they cause significant disfigurement and disability. Sufferers miss school and work, reinforcing conditions of poverty.

Efforts across many sectors are showing progress, however. With availability in recent decades of safe and effective drugs, targeted mass drug administration is proving effective against some of the most prevalent NTDs. More than half a billion treatments for NTDs are currently administered each year in more than 80 countries—300 million through partnerships with non-governmental development organizations (NGDOs). Treatments donated by pharmaceutical companies have proven a catalyst for additional support from other public and private partners in eliminating NTDs. The most successful partnerships have usually included NGDOs that have long been on the frontlines addressing the health challenges of the world’s poorest people—the “bottom billion.”

The Beginnings: NGDO Group for Onchocerciasis Control

One NTD, onchocerciasis (river blindness), is a parasitic disease transmitted through the bites of infected blackflies carrying larval worms. In the human body, the worms mature and release thousands of prelarval worms that cause blindness, rashes, lesions, intense itching and depigmentation. An estimated half a million people are blind because of the disease.

Adrian Hopkins at work in Central African Republic; Founding chair, NTD NGDO Network; director, Mectizan Donation Program, Task Force for Global Health

Dr. Adrian Hopkins, director of the Mectizan Donation Program at The Task Force for Global Health, notes, “Most who suffer from onchocerciasis are the rural poor who live ‘at the end of the road’ or beyond the end of the road. Some are fleeing from conflicts or authorities. Most are very difficult to reach.”

In 1987, Merck & Co., Inc. made the historic announcement that it would donate Mectizan (ivermectin) for the control of onchocerciasis globally, for as long as needed, to as many as needed it. With Merck’s donation, NGDOs like Sightsavers, Helen Keller International and others could do more than vector control and rehabilitating the blind. They could break the cycle of onchocerciasis. The program became one of the most successful public-private health partnerships in the world, involving WHO, UNICEF, the World Bank, ministries of health, NGDOs and community organizations.

The NGDO Group for Onchocerciasis was created in 1992 to formalize the use of Mectizan, build capacity and facilitate interventions for onchocerciasis control.

Dr. Simon Bush, director for advocacy and director for neglected tropical diseases at Sightsavers, an international charity working to eliminate avoidable blindness, says, “The onchocerciasis group was the first of its kind, formed in response to the Mectizan donation by Merck. It was also unique in including a pharmaceutical company as an active member or partner in the group.”

International Coalition for Trachoma Control

Trachoma, another NTD, is the leading cause of infectious blindness. In the estimated 59 endemic countries, 110 million to 210 million people are at risk. The repeated bacterial infections and inflammation it causes can lead to scarring, visual impairment and blindness. It has led to 1.3 million cases of blindness worldwide.

In 1998, Pfizer announced a global donation of the antibiotic Zithromax® (azithromycin) for the elimination of blinding trachoma. Pfizer and the Edna McConnell Clark Foundation established the International Trachoma Initiative, housed at The Task Force for Global Health, to manage the donation program.

In 2004, the International Coalition for Trachoma Control was formed to contribute to the global effort to eliminate blinding trachoma and advocate and implement the WHO-endorsed SAFE strategy (surgery, antibiotics, facial cleanliness, environmental improvements) to treat infection and reduce transmission.

NGDO Network for LF Elimination

Lymphatic filariasis (LF), also called elephantiasis, is caused by parasites transmitted by mosquitoes. Infection is often acquired in childhood but leads to permanent disability later in life. WHO estimates that more than 1.3 billion people in 72 countries are at risk.

In 1997, the 50th World Health Assembly approved a resolution to eliminate LF globally as a public health problem. In 1998, GlaxoSmithKline (GSK) committed to donate all the albendazole tablets necessary to achieve that goal. In collaboration, Merck expanded its drug donation mandate to include LF elimination through co-administration of its ivermectin and GSK’s albendazole in countries where LF and onchocerciasis are both endemic. This combined initiative would become the largest and fastest-growing global drug donation program.

The NGDO Network for LF Elimination was established after the formation in 2000 of the Global Alliance to Eliminate LF, a diverse partnership that supports WHO’s objectives of eliminating LF as a public health problem by 2020 and preventing and alleviating disability and suffering in those already infected.

Formation of the NTD NGDO Network

These three networks found that they shared many of the same member organizations and interests. Moreover, they realized they could collaborate to more effectively pursue their individual missions.

Kim Koporc, director of program implementation for Children without Worms at The Task Force for Global Health, says, “NGDOs for onchocerciasis, such as Helen Keller International, or HKI, were also working on trachoma. NGDOs for soil-transmitted helminths and schistosomiasis also work with HKI and with Sightsavers—all in the same countries, working with the same people.” Bringing everyone together to share resources, best practices and advocacy just made sense.

In 2006, the three networks began meeting together to facilitate collaboration and work toward integrating their respective health interventions for onchocerciasis, trachoma and LF, as well as schistosomiasis and soil-transmitted helminths. These conditions share a common strategy of community-based and school-based mass drug administration that can be integrated to strengthen health systems.

In September 2009, the three groups agreed to form the NTD NGDO Network.

Hopkins became the network’s founding chair. He recalls, “The NGDOs working on onchocerciasis had started adding vitamin A treatments with Mectizan and then other things. We realized we could combine drug treatments and hit several diseases at once. The idea came from pilot programs initiated by NGDOs and is now the crux of WHO’s preventive chemotherapy approach.”

The network holds one joint meeting annually. Its member groups still function independently, with their own structures, funding, missions and programs. Hopkins says the purpose of the network was not to do away with the technical working groups addressing individual disease issues but to create a more unified voice in establishing policy. Working in tandem, network members can make a stronger impact on policy at a global level.

Challenges

Bush, the current chair of the network’s executive group, says agreeing on a mandate and common themes were initial challenges. The deliberation took time but produced a constructive discussion and valuable results.

Compiling data for advocacy purposes was another early challenge—presenting a unified number of treatments the network delivers. Bush says, “We made it too difficult. We needed simple data: how many treatments do you support, where and when? We support around one billion treatments per year across the groups—which is a powerful message about the impact of the network.”

Current challenges include research, advocacy and funding. In pursuing more integrated approaches to drug administration, Hopkins says, “We haven’t been sure whether we can give drugs together. We have to wait for the research before moving ahead. Another challenge is trying to get services to the periphery. NGDOs have to make the case for investment in rural areas. Governments aren’t opposed to it but sometimes have to be persuaded it’s a priority. And it’s difficult to get money from any source now, especially for NTDs.” Globally an estimated US $2-3 billion is needed over the next five years to control and eliminate NTDs.

Koporc, the vice-chair of the network’s executive group, notes another challenge—being able to quantify and articulate what NTD NGDOs do. “The numbers about NTDs don’t tell the full story. It’s not just drug donations. That’s the tip of the iceberg—NGDOs are also doing monitoring, morbidity control, prevention activities and more.”

Impact and Looking Ahead

The formation of the NTD NGDO Network is paying off in tangible ways. Its members recently endorsed a plan, led by the International Coalition for Trachoma Control and developed by McKinsey & Co., to eliminate trachoma by 2020. In another example, Sightsavers needed to work in the Democratic Republic of the Congo (DRC). Through the network they connected to a local organization, UFAR (United Front against Riverblindness), for a partnership in DRC. Bush says, “We wouldn’t have been able to establish trust with a local NGDO who had the right expertise otherwise.”

The network also allows a mechanism for a strong NGDO voice with organizations currently leading NTD issues globally. Koporc observes that the network has been able to give presentations to WHO and has fostered more effective advocacy for NTDs.

The network allows other NTD groups to join, and as a model it has given impetus for other NTDs, like soil-transmitted helminths (STH) and schistosomiasis, to form coordinating groups. Children without Worms, which works to reduce the global burden of infection by a group of intestinal parasites, is the newest member of the network.

Future goals include integrating NGDO activities into primary care settings, to strengthen health systems from the bottom up; breaking down silos in drug administration; mapping where network members work and their scope of activities; developing a simple scorecard to measure performance; expanding into neglected countries; integrating strategies for water and sanitation; and exploring other ways to scale-up their work.

Perhaps the most important impact of the network is that more people are engaging, at the global and the village level, to put an end to NTDs. Hopkins recalls a case in Africa: “Villagers wanted to be sure that limited drug supplies would come to their area. It was the beginning of a population taking charge of their own health, asking for health care.”

And in February 2012, WHO released its first NTD roadmap, which Bush calls “very important for the NTD movement.” The roadmap acknowledges the role of NGDOs and is a big step in addressing what Hopkins calls “forgotten diseases of forgotten people.” He says, “We’re making headway. Looking at the impact—the growth of children, their intellectual development—you see very measurable results.”

Observes Koporc, “NTDs aren’t so neglected anymore.”

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NTD NGDO Network Objectives

• Increase the expansion and effectiveness of advocacy for neglected tropical disease control by giving NGDOs a unified voice at national and international levels on:

-Comprehensive elimination and control programs
-Community ownership
-Strengthening health systems

• Facilitate the formation of partnerships among the group’s members, at the international, regional and national levels

• Provide a mechanism allowing for coordination of NDGO activities at national and international levels to:

-Avoid duplication of efforts
-Identify opportunities for synergy
-Track progress towards goals
-Identify operational research needs

• Share technical updates, develop and uphold best practices and contribute to WHO guidelines to:

-Control and/or eliminate individual NTDs
-Integrate NTD activities
-Promote and support comprehensive NTD control and prevention programs
-Standardize systems and practices

• Present the common interests and concerns of implementing NGDOs with a collaborative voice in mechanisms being established for the mobilization of implementation resources

• Through our members, to support the development and maintenance of NTD national task forces of endemic countries; assist the task forces to:

-Develop and implement national plans
-Identify gaps and coordinate strategies to meet implementation resource shortfalls

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By Heather Jameson