Category Archives: NTDs

“It’s When the Sun Rises and the Wind Blows.” On World Sight Day, Let’s Recommit to Ending Trachoma

Originally posted by the Morbidity Management and Disability Prevention Project

Across the globe, there are 200 million people at risk of trachoma, a preventable, blinding infectious disease.  More than three million people are in need of immediate surgery to avoid blindness due to trichiasis, a manifestation of trachoma that causes eyelashes to turn inward, scraping the cornea with each blink.  We blink 19,000 times a day.

One of the WHO-designated neglected tropical diseases, trachoma threatens the prosperity of families, communities, and nations, and fighting it greatly advances the Sustainable Development Goals addressing poverty, hunger, health, education, gender equality, water and sanitation, economic growth, and inequality.  Trachoma primarily affects impoverished communities, and women – the pillars of society – are up to four times more likely than men to have trichiasis.

When I began working on trachoma nine years ago, the fight to seriously seek disease elimination was just getting off the ground. We couldn’t yet say exactly how many cases existed or where the greatest implementation needs were, and most trachoma-endemic countries lacked the resources to reach the huge numbers of people in need of prevention and treatment services.

How different the picture is now!

Thanks to massive advocacy efforts, a coordinated mobilization of resources by multiple major donors has enabled countries to put in place a package of WHO-endorsed interventions to reach elimination known as the SAFE strategy (Surgery, Antibiotics, Facial cleanliness, and Environmental improvement). Global epidemiological mapping of all areas suspected to have trachoma has been completed in what was the largest infectious disease mapping initiative ever. Based on lessons from countries far along in their SAFE Strategy implementation, preferred practices have been identified and shared widely to ensure all countries have the frameworks critical for effective programming.

With measureable daily progress, those of us working in trachoma understand that our collective efforts are making public health history.

Namalgbsom, who received trichiasis surgery from a mobile medical team in Burkina Faso. "My joy is 100 miles long," she said afterward.

Namalgbsom, who received trichiasis surgery from a mobile medical team in Burkina Faso. “My joy is 100 miles long,” she said afterward.

THE MOST POWERFUL MOTIVATION OF ALL

At the individual level, this means that millions of people will no longer face a future in which they can’t see well enough to work, care for their families, and live independently. Generations of children will not be taken out of school to care for their blind parents, breaking the cycle of poverty.

Something that has struck me most poignantly is the way people describe how trichiasis feels.  “Like grains of sand in the eye.” “A sharp pain.” “A constant stinging sensation.” “A living death.” No one can describe life with trichiasis – and the dramatic change that treatment brings – more movingly than those who have lived it.

I invite you to listen to and share the remarkable stories of three individuals who recently received sight-preserving trichiasis surgery in Burkina Faso. For me, the heartfelt words of people like Sabine, Salfo, and Namalgbsom provide the most powerful motivation of all to continue pushing toward elimination of this terrible disease.

Today on World Sight Day, we have good reason to celebrate the achievements so far. Let’s also make it an occasion to recommit for those who still need our support, those who will go blind if we don’t act now, those who have not yet been reached as Sabine, Salfo, and Namalgbsom have. Remarkably, the World Health Organization goal of eliminating trachoma as a public health problem by 2020 is within reach, but $700-800 million is still urgently needed to finish the job.

Describing her near lifetime of pain from trachoma, Namalgbsom said, “There is no specific time it occurs. It’s when the sun rises and the wind blows.” Together, we can make this a world where people like her do not fear the respite of a cool wind on a hot day or warm beams of sunlight on their face. We know what to do, we know where to do it, and we know how to do it.

We need to act with urgency, quality, and efficiency to meet the 2020 targets. Those not yet reached are depending on us.

About the author

Emily Toubali is director of the Morbidity Management and Disability Prevention (MMDP) Project, which helps countries provide high-quality treatment and care for people suffering from the debilitating effects of trachoma and lymphatic filariasis. The MMDP Project is funded by USAID and managed by Helen Keller International. www.MMDPproject.org

Creating Vectors for Transmission of Knowledge to Combat NTDs

Students from around the world wrote essays as part of their application for leadership positions with END7 for the upcoming academic year. Two students were awarded scholarships to attend the Millennium Campus Conference in Washington, DC. We are publishing the best essays on our blog during the Millennium Campus Conference this week. Scholarship winner John Lu of Duke University (Durham, North Carolina) wrote this essay in response to the prompt “How do you think students and young people can be agents of meaningful change contributing to the fight against NTDs?:”

By John Lu
Duke University

We live in an age of Facebook-level involvement. Supporters are willing to click for a cause, but often times, they are not willing to do much more. Involvement is a spectrum, and the actions lying along the spectrum are not created equal.

Facebook likes are the epitome of “high ease, low engagement” involvement in a cause. I have changed my Facebook profile and cover photos to images related to NTDs, earning hundreds of likes. These likes create a sense of popular support behind NTDs (and an elevation in my self-esteem), but few if any of my friends liking my photos will become more likely to be further engaged with future NTD-related efforts.

Petition signatures and fundraising fall in the middle of the involvement spectrum – moderate ease, moderate engagement. Students asking for petition signatures and tabling to raise funds are certainly empowered to do such activities again in the future. Likewise, those signing the petitions and donating the money are certainly predisposed to contribute their signature or pocket change again.

At the same time, both levels of previously described involvement presuppose the existence of highly engaged members who would be involved in the first place. But why would the rational student spend their ultimate nonrenewable resource—time in college—on NTDs when there are so many other issues vying for the student’s attention? Who is to say fighting NTDs is any more worthwhile than waging war against cancer or campaigning for freedom of speech?

Finally, at the high end of the involvement spectrum lie research and education. They are low ease but high engagement activities, and this high engagement creates “vectors” that infect their contagious enthusiasm into those at other engagement levels. In this way, the research project that my fellow Duke student Phil Reinhart roped me into freshman year sparked my interest in NTDs.

I became interested in NTD research for its potential impact, and my research has done just that. When I presented my schistosomiasis research poster at the Consortium of Universities for Global Health conference in April, I met a Tanzanian official working at the Ministry of Health, who commented that he would contact another colleague working on the Tanzanian NTD Control Program about my findings on the high prevalence of schistosomiasis. A month later, all school-aged children in the village of Sota and the broader Lake Zone of Tanzania were given praziquantel for schistosomiasis by a government-run mass drug administration. Exactly one year before, I was in Sota meeting with the village chief asking for permission to begin my research there.

In reality, my research probably contributed only a little to the Ministry’s decision to launch its NTD campaign, for I am certainly not the first to report the high levels of schistosomiasis prevalence in communities surrounding Lake Victoria (Lonely Planet even warned against swimming in the bilharzia-infested waters). But I believe my research had a great value for an entirely different reason: it made me invested in the NTD movement. I discovered why I cared about NTDs. In turn, I sought out new avenues for engagement, such that now I am justifiably a “vector of transmission” of NTD knowledge—I created and taught Duke’s first for-credit course focused on NTDs this past semester.

I have spent my past year as an END7 student leader attempting to help other students discover why they should care about NTDs. Of the eight students that I taught in my NTD course, two will co-teach the course again with me next semester, and another was just drafted to the Los Angeles Lakers NBA team as the #2 draft pick of 2016. Out of the partnership Phil and I created between our schistosomiasis project and GlobeMed@Duke, four students will spend two months each in Tanzania implementing the schistosomiasis educational and promotional materials this summer. Future students who submit to the Duke Global Health Review will be incentivized to conduct research and produce papers on NTDs by the section reserved solely for NTD-related papers.

Creating these vectors for transmission will not dramatically increase the number of petition signatures collected or amount of money raised at Duke in the short-term—the time spent investing in human capital could have been spent on reaching these specific goals—but it will create a sustainable campaign that generates dividends long after I graduate. In quantifying involvement, we typically resort to measuring short-term transactional indicators, such as signatures on a petition. Instead, I focus on measuring the long-term fundamentals via the quality of people involved. If we are ever going to end the seven most common NTDs, we need to play the long-term game. We need to invest in human capital.

Students becoming agents of change is an inherently desirable process—we all want to make the world a better place. However, without outside guidance, students rarely become those agents of change. In chemistry, we call this a thermodynamically favorable but kinetically unfavorable reaction. The solution in chemistry is to bring in a catalyst to lower the activation energy barrier. I believe a similar solution can be prescribed for creating agents of change: we need students to lead the process of creating opportunities for their peers to engage.

This is a philosophy, not a prescription, for change. It will guide how I raise awareness and recruit new students to join END7 at the Millennium Campus Conference: I hope to launch an online photo campaign documenting END7 student leaders’ and employees’ stories of how they became involved with the effort to control and eliminate NTDs. Stories communicate vulnerability. Stories inspire. Stories help others discover why they should care.

On Memorial Day, there was a New York Times op-ed about the distinction between small love and big love. Small love is what soldiers feel for their families, friends, and communities. Big love is what soldiers feel for their country, for the ideals for which they fight. We need more people with big love for NTDs. Let’s start sharing the love that we already possess.

Lu, JohnJohn Lu is a rising junior at Duke University studying chemistry, mathematics, and global health. During his sophomore year, he created and taught Duke’s first for-credit course on neglected tropical diseases. He also founded the Duke Global Health Review, an undergraduate global health journal. He has won a number of grants and fellowships to fund research on Epstein-Barr virus pathogenesis, schistosomiasis prevalence, and childhood vaccination uptake. This year, John will serve on the END7 Student Advisory Board.

This is Just the Beginning: Expanding END7 Internationally

Students from around the world wrote essays as part of their application for leadership positions with END7 for the upcoming academic year. Two students were awarded scholarships to attend the Millennium Campus Conference in Washington, DC. We are publishing the best essays on our blog during the Millennium Campus Conference this week. Scholarship winner Beth Poulton of the University of Glasgow (Glasgow, Scotland) wrote this essay in response to the prompt “How do you think students and young people can be agents of meaningful change contributing to the fight against NTDs?:”

By Beth Poulton
University of Glasgow

My experience on the END7 Campus Leaders Council this year has been exceptional. I set up the first END7 student group in the UK and to my surprise it has been very successful. I think young people, especially students can have a real impact in fighting NTDs as we have the potential to create change in attitudes and policy – and hopefully instill others with a passion for this cause.

Universities – environments dedicated to learning and improving our society – provide many opportunities to educate large numbers of people about NTDs. They also have some of the most diverse populations in the world, enrolling students from hundreds of countries and backgrounds with a range of experiences, interests and plans for the future. Additionally, are filled with experts on a wide range of subjects who are almost always willing to talk about their work or interests. END7 at the University of Glasgow has an array of NTD experts at our fingertips due to our university’s large parasitology department, and we plan to make even more use of their expertise over the next school year.

Last semester, we held two different professor guest lectures, one by Professor Michael Barrett as an introduction to NTDs, and a second by Dr. Sylvia Taylor who discussed the seven NTDs targeted by END7 from a biological perspective. Dr. Taylor also brought along some specimen samples from the zoology laboratory for our audience to see and discussed some of the work she had done to tackle schistosomiasis on a plantation. I think these talks were very successful in highlighting the importance of END7’s mission.

In addition to professor guest lectures, next semester, I would like to plan a conference to focus on the work END7 does from a less biological perspective featuring some of the University staff who deal with global health or have had personal experience with tackling NTDs, which would be a more inclusive opportunity for students outside of the hard sciences. I think an event like this would open up the topic for discussion and allow students and staff to communicate different ideas.

I think the internet and in particular social media is one of the most lucrative tools at our fingertips, due to the potential for something typed in the UK to be viewed by thousands if not millions of people across the globe. As part of a generation that has grown up with computers and mobile phones, I think that many students have the ability to establish a real presence online for a cause like END7. This is something I have started to do this year for GUEND7. Our Facebook page has 175 likes, and sometimes our posts are viewed by over 800 people! This is just the beginning, though. We are a very new group and I would love for us to expand outside of the University of Glasgow and have an impact further afield.

When I attend the Millennium Campus Conference, I believe that I could inspire other students to set up END7 groups at their own universities as I am passionate about END7 and think I can use this to encourage others to join the fight against NTDs. I am also a fairly outgoing person who is very comfortable talking to people I don’t know, which I think would be important at a busy conference.

The students at the conference will be flooded with information about hundreds of opportunities and causes that they could be involved in, so I would look to produce a flyer with information about END7, student leadership opportunities, and website, social media and email details. I think this will allow students who are interested to learn more details after the conference and consider applying for a leadership position with the campaign.

I would also design a t-shirt and a badge to wear at the conference with END7’s logo, and think of a hashtag to use to promote END7 on my own social media throughout the week while sharing information about the conference. I think this would encourage people at the conference to ask me more about END7.

Poulton, BethAs a student myself, I can understand the pressure of choosing between many different opportunities. In recruiting students to join END7, I would try to emphasize the benefits of getting involved, like CV building, leadership development, and the opportunity to interact with students from all over the world. I think this would encourage students to undertake the responsibility of launching an END7 chapter and joining the fight against NTDs.

Beth Poulton is entering the final year of her undergraduate parasitology degree at the University of Glasgow in Scotland. She learned about END7 while researching for an essay on Mass Drug Administration last year, applied to join the END7 Campus Leaders Council, and subsequently set up the first END7 student group in the UK, The GU END7 Society. This year, she will serve on the END7 Student Advisory Board.

Hope for My Generation

Students from around the world wrote essays as part of their application for leadership positions with END7 for the upcoming academic year. Two students were awarded scholarships to attend the Millennium Campus Conference in Washington, DC. We are publishing the best essays on our blog during the Millennium Campus Conference this week. Runner-up Bailey Hilton of James Madison University (Harrisonburg, Virginia) wrote this essay in response to the prompt “How do you think students and young people can be agents of meaningful change contributing to the fight against NTDs?:”

By Bailey Hilton
James Madison University

I, for one, feel very lucky to be considered a millennial. In my lifetime I have seen technology advance from cassette tapes, to CDs, to mp3 files; and from VHS tapes, to DVDs, to streaming movies on demand. We are the first generation to take computerized tests and to learn online. We are otherwise known as Generation Y, or Generation “Why,” because we ask so many questions. I believe that my generation is the powerhouse that is going to change the world with innovation, intelligence, and forward thinking.

BaileyOn March 1, 2016, I attended the END7 Student Advocacy Day in Washington, D.C. alongside forty other college students representing END7 from all across the United States. Together we met with 39 offices of U.S. senators and representatives to discuss the United States Agency for International Development’s Neglected Tropical Diseases (NTD) Program budget. My group had a meeting with the office of Senator Diane Feinstein of California. The moment that I so vividly remember from that meeting was when the senator’s advisor told us that speaking to us about this issue we were so passionate about gave her hope for our generation, and that she felt confident that the future is in the right hands. Though she may not have fully shared our particular passion for NTDs, our meeting reinforced her belief in our generation’s ability to make a difference in our country and in the world.

After my experience at the END7 Student Advocacy Day, I am confident that if my small group could leave an impression on the most important policymakers in the U.S. government, then we can certainly make an impact on our peers back at our respective schools. After returning from Washington, I decided to get more involved in the fight against NTDs and was elected President of the Dukes Fighting NTDs Club at James Madison University.

Every student attending the Millennium Campus Conference shares a passion for being a catalyst of change within their communities, country, and the world. We all share a common goal: to make the world a better place. One of our most important talking points from Student Advocacy Day described the impact that NTDs could have on every aspect of a patient’s life: their overall health, their education, their jobs, and their families. If I were selected for this scholarship to attend the conference, I would use this talking point to create a connection between NTDs and the causes that others in attendance are passionate about. For example, if someone at the conference is attending on behalf of their organization that focuses on HIV and AIDS, I could show the relationship between treatment of NTDs and decreased risk of women contracting HIV. By bringing attention to this connection, I believe I will be able to motivate new students to join our campaign and the fight to end NTDs.

An important concept that comes into play here is reciprocal determinism, which states that our decisions can be impacted by our environment, and vice versa. This concept was very important in my Health Behavior Change class and I think that it applies well in this particular scenario. I believe that if I can create a connection between myself and others, as well as between my organization (END7 and Dukes Fighting NTDs) and the organizations that others are passionate about, together our choices will positively impact the environment (the world, and those impacted by NTDs). In turn as the environment improves, our choices will change and evolve to continue to make an impact. I believe that my vision could have widespread impact not only on the END7 campaign, but also into other issues as we all come together and work to achieve our common goal of making the world a better, healthier place for all.