Taking the “neglect” out of “neglected tropical diseases”

NTD-Competitions-BlogImage-1Today we’ve posted an essay by Rice University rising junior Anjali Bhatla, one of five winners of a student competition on raising awareness of neglected tropical diseases (NTDs), a group of parasitic, viral and bacterial infections that afflict mainly those living in extreme poverty.

The writing contest and related outreach competition are associated with a Sept. 29-30 Baker Institute conference on NTDs in the U.S. and Mexico. One winning essay will be featured here each week leading up the conference.

The public is invited to attend the Baker Institute NTD conference, but an RSVP is required. Please click here for more information and to register for the event.

Most people have never heard of diseases such as Chagas, elephantiasis, or ascariasis. However, these illnesses are some of the 17 infectious diseases the World Health Organization has categorized as “neglected tropical diseases” (NTDs). NTDs are said to affect the “bottom billion” of the world’s population, or those who are living on less than $1.25 per day. NTDs, which have a high morbidity, have been shown to perpetuate the cycle of poverty due to their ability to impair physical and cognitive development, negatively affect maternal and child health, and socially stigmatize those who are afflicted. Regardless of the disabling economic consequences of NTDs, they have been largely ignored, continuing to persist in the world’s most marginalized populations. Contrary to popular belief, NTDs do not just exist in developing countries, but rather have been shown to also exist in pockets of poverty in developed countries. Given the neglected nature of NTDs, there is plenty that we as students can do to make a difference in the lives of those living with NTDs. Ending the neglect requires three steps: 1) education, 2) awareness, and 3) advocacy.

Education is a key component in impacting the field of NTDs. Through educating ourselves, we can articulate the importance of NTDs to others. This requires understanding what aspects of NTDs contribute to the neglect they continually face. First, they have a high morbidity, rather than high mortality, rendering them “less important” than diseases such as HIV and tuberculosis. However, morbidity can have just as disastrous consequences as mortality, and NTDs render those infected chronically disabled. Second, NTDs predominately affect those living in impoverished countries, which makes it difficult to communicate the ramifications of the diseases to individuals with the social and political capital to aid endemic countries. Third, the demographics of infected individuals make it unprofitable for pharmaceutical companies to pursue therapies for NTDs. These factors are the reasons why it is of utmost importance for us as students to educate ourselves about NTDs and communicate the value of preventing these diseases to others.

Engaging the public is imperative if we are to mobilize a movement to end NTDs. This requires using our knowledge to disseminate information on the social and economic consequences of NTDs and the need for the public to address these issues through fund-raising and advocacy. A great way for students to increase awareness of NTDs on campus is to start an END7 chapter at their college. END7 aims to increase awareness of the seven most common NTDs and raise funds for mass drug administration, which can greatly reduce the incidence of NTDs in endemic countries. Through a student organization such as END7, undergraduates can exchange ideas on how to address the health disparities prevalent in endemic countries, engage in dialogue with peers on the importance of addressing NTDs, and implement creative events, programming, and social media campaigns to increase understanding of NTDs at a societal level.

The team that will be spearheading END7 at Rice University, of which I am a member, has discussed a number of creative projects, including depicting stories of patients with NTDs, creating an “NTD week” to educate students on the scientific and social aspects of a different disease each day, and sponsoring a 5K with seven water stops, each featuring information on an individual NTD. Utilizing social media can be a way of reaching a much wider audience, and college students are in a unique position to capitalize on the use of technology. A social media campaign in which a person takes a picture of themselves taking action against NTDs and uses the hashtag #nomoreneglect could be a potential way of incorporating a much larger audience into the conversation. Ultimately we want to increase awareness in order to spur action in others, and I believe a great way of doing this would be to create a service-learning grant program in which students could apply for money to implement a project that addresses NTDs in a creative way. These grants could fund projects such as a student policy competition on NTDs or the creation of curriculum to educate K-12 students on NTDs. By funding student projects around the country and world, each person can have a leadership role in taking action against NTDs.

Ultimately, I believe policy structures need to be utilized in order to address the health disparities that cause NTDs. Low socioeconomic status, inadequate health systems, and the need for proper infrastructure for clean water and sanitation are root causes of NTDs. We need to frame NTDs as a social justice issue in health: a realization that elements of society disproportionately contribute to this public health issue and policy should be drafted to aid those in need. Students can have a profound impact on policy by speaking with their local and national representatives about important issues and advocating for certain pieces of legislation. For example, most of the funding for fighting NTDs comes from developed countries, and policymakers are proposing a cut in funding in the current US budget. By calling representatives, writing letters, and signing petitions, it is possible to convince Congress of the importance of retaining funding for NTDs. As students, our voice is incredibly important, and we have a social responsibility to engage in the political process and advocate for NTDs at the governmental level.

More than one billion of the world’s population is suffering from NTDs, a staggering amount of people to be affected by a group of infections few have heard of. We cannot continue to let this injustice occur, and as the next generation we need to be civically minded students. Addressing the issue of NTDs is critical to improving the health and economic productivity of over one-seventh of the world’s population. Through education, awareness, and advocacy of NTDs, we can drive significant social change and work toward taking the neglect out of neglected tropical diseases.

Anjali Bhatla is a rising junior at Rice University majoring in health sciences and policy studies. Bhatla founded the Rice University chapter of the END7 campaign, which aims to raise awareness and funds for the seven most common neglected tropical diseases (NTDs). She plans to pursue an M.D./MBA dual degree and ultimately develop and implement policies that help make health care systems more equitable and efficient.

This essay originally appeared on the Baker Institute Blog.

Helen Keller International and TOMS: Motivating Community Drug Distributors in Sierra Leone

Fatmata

 

Efforts to fight Neglected Tropical Diseases (NTDs) are truly massive undertakings, since their success hinges upon the ability of national NTD programs to literally reach millions of people and provide each and every person with preventive medications.

Sierra Leone is one of many countries that has risen to this challenge. With a population exceeding 6 million people, the country’s NTD program relies on approximately 30,000 Community Drug Distributors (CDDs) to distribute NTD medications throughout its 12 rural districts.

And if recruiting, organizing and managing that many CDDs weren’t enough of a challenge, there’s one other detail that’s worth noting. Although these 30,000 CDDs must spend days, if not weeks, ensuring that their communities receive drugs that will prevent blindness, kidney and liver disease, malnutrition, and physical deformities, none receive any payment for their services.

In an effort to motivate and reward the CDDs for their important work and to reduce attrition, Helen Keller International (HKI) and the National NTD Program have partnered with TOMS, a US-based, philanthropically minded company that has given away over 45 million pairs of shoes to children in over 70 countries. To date, Sierra Leone has received two shipments of TOMS Shoes—over 300,000 pairs –between 2013-2014 to distribute to the CDDS and their children.

In 2013, each CDD received three pairs of shoes for his or her family; this was increased to five pairs in 2014. Shoes were also distributed to others whose support has been instrumental to the success of the country’s NTD mass drug administration (MDA), such as community leaders, peripheral health unit (PHU) staff, and members of the district health management team.

From a logistical standpoint, ensuring that CDDs receive these shoes is almost as complex an undertaking as conducting the MDAs themselves for Helen Keller International (HKI), the sub-grantee organization that supports Sierra Leone’s NTD Program in partnership with END in Africa’s administrator, FHI360. First, HKI helps the National NTD Program determine the total number of participating CDDs and estimate the total number of shoes needed, as well as the number of pairs per size. An order is then placed with TOMS Shoes.

Once the shoes arrive at the Freetown port several months later, they must be trucked to six distribution points throughout the country. Shoes are then divided up by district; and the districts assume the responsibility for ensuring that their PHUs receive enough shoes for all the CDDs in their areas. Finally, the CDDs receive shoes for themselves and their children.

The children are ecstatic about getting a new pair of TOMS Shoes. Eight-year-old Fatmata remembers the day she received her pair of TOMS Shoes: “My old shoes are worn out and I was thinking if my parents can afford to buy me another pair of shoes before the opening of school.” Her grandfather appreciated their value as well, noting that they’ll not only motivate Fatmata to go to school, but they’ll also help reduce her risk of hookworm infection from walking barefoot.

Despite the challenges, the National NTD Program and HKI officials agree that getting shoes to each of the CDDs is well worth the considerable effort it takes to administer the initiative. After all, the National NTD Program would not be able to conduct MDAs without the CDDs; indeed, their success hinges on the work of the CDDs. Without their commitment and hard work, millions of persons would still be suffering from preventable and treatable diseases.

HKI and Sierra Leone’s NTD Program look forward to continuing to partner with TOMS, and plan to distribute additional TOMS shoes in 2015.

This blog was originally published by End Neglected Tropical Diseases in Africa.

Photo: Wearing her new TOMS shoes, Fatmata gets a hug from her father, a volunteer who distributes medicines to prevent NTDs in Sierra Leone. Credit Helen Keller International

An Open Letter: The Case for Deworming Children

The following letter was signed by the Global Network and more than 20 other organizations, affirming the importance of deworming programs.

Like vaccines, deworming programs offer children living in communities without clean water and sanitation a foundation for improved health and a world of opportunity.

870 million children around the world are at risk from soil transmitted helminths (STH), or parasitic intestinal worms. Intestinal worms are diseases of poverty, endemic in communities with limited access to clean water and proper sanitation facilities. STH-related infections cause anemia, malabsorption of nutrients, diarrhea, and loss of appetite. Children suffering from STH infections face impaired cognitive development and reduced quality of life over the long-term.

As scientists, practitioners and child health advocates working in government, business and civil society, we are committed to ensuring that children around the world have the chance to live worm-free, healthy, and productive lives.

On July 23, two replication studies and one systematic review were released that call into question some of the benefits of mass deworming programs. The systematic review by the Cochrane Collaboration does not take into consideration a number of recent studies that demonstrate the health, educational, and economic benefits of deworming. This evidence base has informed – and continues to inform – good public policy.

Mass deworming programs reach millions of at-risk children with safe, effective drugs. Often administered in schools, these programs represent the best in collaboration across governments, nongovernmental organizations, donors, pharmaceutical companies, community leaders, health workers, and teachers. Globally, national deworming programs are one of the most cost-effective interventions in global health and development—and they are key to the World Health Organization’s strategy to reducing the morbidity caused by intestinal worm infections in children.

A growing body of evidence affirms the positive impacts of mass deworming: Worm-free children have a better shot at healthy, productive lives. We are united in our commitment to mass deworming as one of the most cost-effective ways to provide infected children with greater quality of life and better health and education outcomes.

Signatories

Organizations

Banka BioLoo
Children’s Investment Fund Foundation
Children Without Worms
Evidence Action
Food for the Hungry
HDI (Health & Development International)
Helen Keller International
Ivo de Carneri Foundation, Italy
Ivo de Carneri Foundation, Zanzibar
Kenya Medical Research Institute
Merck
Mundo Sano Foundation
Porridge and Rice
Public Health Laboratory- Ivo de Carneri, (PHL-IdC) WHO Collaborating Centre for NTDs
Schistosomiasis Consortium for Operational Research and Evaluation (SCORE)
Sightsavers
The Global Network for Neglected Tropical Diseases
The MENTOR Initiative
Schistosomiasis Control Initiative
WaterAid
World Concern
World Vision International

Individuals

Dr. Clayton Ajello, Senior Technical Advisor, Vitamin Angels Alliance, Inc.
Dr. Yahya Al-Sawafy, Resident Representative, Ivo de Carneri Foundation, Zanzibar Branch
Dr. Marco Albonico, Ivo de Carneri Foundation, Milan, Italy
Professor Alan Fenwick, Director, Schistosomiasis Control Initiative
Dr. Teshome Gebre Kanno, Regional Director for Africa, International Trachoma Initiative, Addis Ababa, Ethiopia
Seung Lee, Senior Director, School Health and Nutrition, Save the Children USA
Dr. Saleh Juma Mohammed, NTD Coordinator, Ministry of Health, Pemba Island, Zanzibar
Stephanie Ogden, Senior Water Policy Advisor, CARE
Dr. CR Revankar, Consultant, Elimination of Neglected Tropical Diseases
Peter Rodrigues, Deputy Director, World Food Programme
Tala de los Santos, Global Program Leader, Diagnostics, PATH
Dr. Lorenzo Savioli MD, Chair of the Executive Group of the Global Schistosomiasis Alliance (GSA)

A Moral Imperative: END7 Student Simran Dhunna Urges World Leaders to Prioritize NTDs

END7 has just announced the members of the 2015-2016 Student Advisory Board. Congratulations to all of our new and returning board members, and our sincere thanks to everyone who applied! The Student Advisory Board will mentor other student leaders and advise END7 on student engagement for the entire school year. By contributing their time and expertise to the activities of the Board, representatives play a major role in charting the course of the END7 campaign.

As world leaders prepare to finalize the Sustainable Development Goals (SDGs) this September — and their indicators in March — we asked students to tell us how they would make a case to world leaders to include a goal to control and eliminate neglected tropical diseases. Read END7 Student Advisory Board representative Simran Dhunna’s response below.

Simran Dhunna E7

After the Ebola outbreak in West Africa, the world suddenly became acutely aware of the gaps that exist in global health governance and health systems. The World Health Organization demonstrated that there are deep-rooted structural limitations in its own system of finance and accountability. Furthermore, the infectious disease events of this year, including but not limited to Ebola, have shown the debilitating effects of neglect on populations without access to healthcare. For example, we’ve stood by as civil unrest has continued to exacerbate the spread of NTDs, such as the outbreak of Dengue in Yemen. Within and beyond the 17 diseases that the WHO designates as “Neglected Tropical Diseases,” lies an unfortunate truth: communities and the endemic diseases they suffer from are neglected because they are trapped in a cycle of poverty. Thus, the case I would make to world leaders rests on this principle: neglected diseases do not function in a vacuum. Rather than being an isolated public health issue, NTDs are multifaceted, in that they interact with virtually every aspect of society.

The SDGs, naturally, include an emphasis on poverty and climate change. NTDs encompass both of these topics. Firstly, it has been well established through clinical and academic literature that neglected communities remain generally at the lowest tiers of socioeconomic status. In essence, diseases such as sleeping sickness or lymphatic filariasis disproportionately affect the poor much more than every other socioeconomic class. This is not a coincidence. Individuals who suffer from NTDs have nearly every facet of their lives affected, such that they cannot pursue their most basic goals and aspirations, like an education or sustainable employment. To the world leaders, I would say that NTDs are so interwoven with issues of poverty, that to not include diseases of poverty in our global agenda would be a disservice to the SDG that aims to eliminate poverty. In other words, our strengthened efforts to eliminate NTDs could result in more children going to school, getting a job and having prosperous lives. Removing this massive health burden can be the key to lifting millions of individuals, and neglected communities, out of poverty.

One of the other SDGs concerns itself with climate change. The unique characteristic about neglected tropical diseases is that they profoundly interact with the environment. Many of the NTDs are zoonotic or parasitic/helminthic diseases. Thus, there is an inevitable cause-and-effect relationship between a community’s environment and its state of health. Just as several global health professionals use a ‘One Health’ perspective, it’s essential to recognize the unique animal-human interface that is so inherent in NTDs. Changing climates mean that the ecology and evolution of vectors and other pathogenic organisms is also constantly fluctuating. The migration patterns of mosquitos, for example, could be spreading an outbreak to other areas not equipped to deal with it. We already see the rapid development of certain diseases like MDR-TB, in which organisms are spreading resistance genes at a faster rate due to environmental factors. Moreover, weaknesses in environmental systems, such as sanitation and sewage, lend themselves to further public health concerns. Hence, NTDs are not isolated to one community and one clinical issue – they are affected by the agricultural practices of a given region and the environmental policies that govern whether individuals have access to clean water. The ecology and environment of humans, which is undeniably affected by climate change, is a fundamental contributing aspect of NTDs. Including climate change in the SDGs necessitates that NTDs also be addressed, because one is a central causal factor of the other.

Finally, to the world leaders I say this: having broad goals is admirable, but having achievable goals is necessary. Campaigns like END7 demonstrate the austerity in addressing NTDs: medications that eliminate certain neglected diseases exist. There are simply no systems in place for neglected communities to access them. I would implore the world leaders to consider the feasibility of adding NTDs to the Sustainable Development Goals, because eliminating NTDs can be done through appropriate dissemination and implementation of treatment programs, such as deworming initiatives.

The elimination of NTDs is very much a reality in the future. The problem lies in the lack of existing frameworks to address them: there is limited global commitment to eliminating NTDs, and a lack of incentive to invest R&D into them. What I see is a gap in commitment to a worthwhile cause, one that demands as much attention as any other global health or development issue. Dedicating a Sustainable Development Goal to ending neglected tropical diseases is not only an achievable target – it is a moral imperative for world leaders to act upon.

END7 Student Advisory Board representative Simran Dhunna is a junior studying microbiology and global health at the University of Toronto.