All posts by Global Network for NTDs

Making a Difference – and Having an Amazing Time Doing It

The END7 campaign, through the support of Uniting to Combat NTDs, awarded scholarships to three outstanding student leaders to attend the third annual NTD Student Advocacy Day in Washington, D.C. Read scholarship winner Shangir Siddique’s reflection on his experience:

By Shangir H. Siddique, University of Texas Health Science Center

student adv day pic 2Life-changing. That is how I would describe my experience on NTD Student Advocacy Day. As a student who had just finished my Master of Public Health in Epidemiology and was about to start medical school in the fall, I had never thought I would be able to step into the world of the United States Government and have a direct impact on policymaking…at least, not this early. And yet, that is exactly what we, END7 student leaders from across the US, did on May 2.

Given that an appropriations deal for the remainder of Fiscal Year 2017 had been reached in Congress just days before Student Advocacy Day and that it protected funding for the United States Agency for International Development NTD Program, we were able to focus our Advocacy Day message on how potential future budget changes could drastically curtail our ability to treat and prevent NTDs worldwide. The key goal of the day was to convince our representatives in Congress to keep level funding for the program in the face of deep cuts to global health and development proposed by the Trump administration.

We began Advocacy Day with a series of presentations by professionals in the field. Michelle Brooks of Uniting to Combat NTDs started us off by giving a basic overview of the USAID NTD program, which tied in directly to our advocacy goal of protecting funding for this program. Kalpana Bhandari inspired us by explaining her experiences with NTDs both professionally and personally, sharing stories from her childhood in Nepal. As someone whose family comes from a country where some NTDs are endemic, I found her story to be exceptionally touching, and it motivated me to approached the day’s efforts with my all. Lastly, we learned about new surgical solutions to address NTDs from Zeina Sifri of Helen Keller International. These approaches to surgery and morbidity management complement the preventative approach of mass drug administration and could prove to be a life-changing solution for millions of people for whom taking currently available medications are not sufficient to prevent further disease or relieve suffering (such as in the case of elephantiasis caused by lymphatic filariasis). After a brief lunch where we went over our talking points, it was time to begin our jobs as advocates!

As part of group 5, I met with the offices of Representatives Kay Granger and Gregory Meeks, as well as Senator Chris Murphy’s office. As part of our “pitch” we explained what the USAID NTD Program has achieved since its creation under President George W. Bush, how the United States’ investment in global health, specifically the USAID program, is a smart use of resources that saves lives and enables effective foreign policy Latin America, Asia and Africa. Fortunately, the unanimous response from all three offices was great support towards maintaining the U.S.’s current position as a leader in global health. I found this to be extremely interesting, considering the differences between the three offices – both by political party affiliation and by which chamber of congress in which the member served. It was heartening to realize that partisanship is not strong enough to interfere with our country’s long history of global leadership in public health and medical interventions, innovation and advancement.

Perhaps my favorite part of Student Advocacy Day was the opportunity to interact with and learn from students interested in global health and NTDs from across the country. The wide representation we had state-wise proved to be effective in terms of using our status as constituents during our meetings. But beyond accomplishing our goals, it was extremely easy to bond with the other students and share our hopes, interests, and aspirations relating to NTDs and otherwise. I made a point to keep the contact list we were provided and take many pictures, and I am certain that many of the next generation of global health leaders will emerge from this group of students.

student adv day pic 1

Walking into our advocacy meetings with the knowledge that the funding for the USAID NTD program was safe for the remainder of fiscal year 2017 but uncertain for 2018 was an excellent motivator for us to do our best to plan ahead. The current uncertainty around the Administration’s outlook on expenditures like foreign aid, including the USAID NTD Program, are deeply troubling for not only the NTD and global health community, but for all citizens of the U.S., and individuals all over the world. The risks associated with the U.S. potentially backing down from its leadership in global health would have severe repercussions across the globe and foretells a future where we may no longer be able to say we are a force for good worldwide – diminishing some of the U.S.’s global influence, which we have maintained since World War II.

It is my sincere hope that Congress lives up to its constitutional duties as the controller of the purse strings of the U.S. Government and makes smart, forward-thinking decisions about spending on global health and international development. While the Administration may attempt to advance a different agenda, it is up to our representatives on the Hill in both the House and the Senate to remember how their constituents not only desire a well-regarded and influential America but one that helps the impoverished worldwide as well.

Shangir Siddique recently completed his Master of Public Health-Epidemiology at the University of Texas Health Science Center. He will start medical school this fall.

NTD Awareness Week 2017, from Acoustic Night to Zumba

On January 30, the fifth anniversary of the London Declaration on Neglected Tropical Diseases (NTDs), END7 student supporters around the world kicked off the second annual NTD Awareness Week. For seven days, students held fundraisers, led advocacy activities and raised awareness of the burden of NTDs and the incredible promise of the global effort to end them for good.

Here are some of the highlights from a fun and busy week:

The END7 Mexico Chapter, led by students at Lalo Onti - Noche acústica END7Anáhuac University in Mexico City, raised awareness of NTDs among students and faculty on campus by creating five unique posters about NTDs for display on the University’s Faculty Board (with plans for 13 more posters in the works!). END7 Mexico members shared more than 100 posts about NTDs on social media throughout the week. Dr. Diego Abelardo Álvarez Hernández, a postgraduate student and representative on the END7 Campus Leaders Council, welcomed a new faculty member to the Anáhuac University NTD Interest Group, increasing the University’s research focus on NTDs like Chagas disease present in Mexico. To end the week, the group planned an acoustic night at Peña El Sapo Cancionero, a large venue that they completely filled for a special concert with musician Lalo Onti. Ticket sales for the event raised nearly $500 for END7!

Georgetown t-shirt tues 2The students of END7 at Georgetown University in Washington, D.C. kicked off NTD Awareness Week with Media Monday, a social media blast of facts about NTDs and END7, and T-shirt Tuesday – a fun way for END7 members to wear their support for END7 on their sleeves and raise awareness of NTDs! They ended the week with a fundraiser at South Block Juice Co. on Thursday and a pizza party to gather as a club to watch END7’s Facebook Live Q&A with Dr. Peter Hotez on Friday.

Northeastern zumba 1END7 at Northeastern University planned a full slate of activities to celebrate NTD Awareness Week in Boston. Throughout the week, club officers gave short presentations in science classes to recruit new members to their END7 chapter and advertise the week’s events – including a fun Zumba workout class fundraiser! Students sweat and shimmied for a good cause, raising $100 for NTD treatment. They refueled on Friday with a pizza party to watch END7’s Facebook Live Q&A with Dr. Peter Hotez.

Northeastern pizza party

END7 at the University of Texas-Dallas organized a fundraiser at the restaurant Raising Cane’s on January 30, with the restaurant donating 15% of profits to END7 – a fun and delicious way to kick off NTD Awareness Week. Throughout the week, club members promoted their chapter’s brand-new Twitter account and used their own social media accounts to spread the word about NTDs, posting “unselfies” explaining their passion for the cause.

UT Dallas unselfie 2UT Dallas unselfie 1

Fellow Texans at Rice University in Houston also had a busy NTD Awareness Week, planning an event every single day to build a drumbeat about NTDs and END7 on campus!

Rice University NTD Week schedule

On Sunday, they handed out donuts to students in exchange for “likes” on their club’s Facebook page – a clever marketing strategy to spread the word about the rest of the week’s events! They continued this tasty approach with a candy giveaway at the library on Monday, and switched gears Tuesday by releasing a new awareness-raising video and entering students who shared it in a raffle. Wednesday saw more donuts and more Facebook likes, while things took a more academic turn Thursday with a journal club discussion for research-minded students interested in learning more about the Zika virus (fueled by bagels and coffee, of course).

Facebook Live screenshot

END7 at Rice officer Renisa Ramnath interviews Dr. Peter Hotez on Facebook Live.

END7 at Rice joined student groups around the world in hosting a viewing party for END7’s Facebook Live Q&A with Dr. Peter Hotez – tuning in to see one of their own club officers, Policy and Advocacy co-chair Renisa Ramnath, serve as one of the student interviewers! They worked off the pizza they enjoyed at the party at their final NTD Awareness Week event on Saturday: a “Ball for Life” basketball tournament! Teams of 3 competed to win tickets to a Houston Rockets NBA game and all proceeds from registration went to END7.

END7’s oldest student chapter at the University of Texas-Austin celebrated NTD Awareness Week with a NTD documentary watch party. They also hosted a successful “bagels and brochures” tabling event handing out free Panera treats and information about NTDs to passing students.

SMU Tropical NightFor the second year, END7’s dedicated Canadian student supporters at Saint Mary’s University in Halifax celebrated NTD Awareness Week with a Tropical Night fundraiser. This evening of tropical food, games and costumes is a great example of how fun fundraising can be while generating support for NTD treatment – in this case, over $700 worth!

END7 Campus Leaders Council member Deepshika Verma, working to launch an END7 chapter at the University of Southern California in Los Angeles, got a publicity boost during NTD Awareness Week with a fantastic radio story about END7 produced by USC student Alana Bracken. As Deepshika put it on air, “END7 tries to shed light on these diseases because they’re just as important as the diseases we’re very well aware about” – a great summary of our goals for NTD Awareness Week!

Students at Kwame Nkrumah University of Science and Technology in in Kumasi, Ghana and the University of Benin in Benin City, Nigeria joined the charge to raise awareness of NTDs by distributing educational materials, putting up END7 posters and hosting awareness events on campus as they strived to spread the word about their cause and recruit new members to their growing chapters.

Many students dove into advocacy during NTD Awareness Week, with students at the UTHealth campus in Brownsville, Texas writing five op-eds defending the value of U.S. investments in global health at this time of political change in the United States and abroad. END7 supporters at Duke University enrolled in a student-led “house course” on NTDs joined in with an op-ed writing competition using END7’s latest op-ed writing guide. END7 Student Advisory Board representative John Lu, a Duke junior spending the spring semester studying abroad at Oxford University in the UK, hosted a pizza party to introduce Oxford students to the END7 campaign by watching END7’s Facebook Live Q&A with Dr. Peter Hotez. Despite having just arrived on campus, John recruited 20 students to attend the event and explore opportunities to fight NTDs on campus!

The second annual NTD Awareness Week was a truly global celebration of the amazing progress that has been made in the fight against NTDs in the five years since the London Declaration on NTDs and the launch of the END7 campaign – and a reminder that advocacy, fundraising, and creative efforts to raise awareness are needed more than ever to reach our end goal of a world free from the suffering caused by NTDs. We are grateful that the END7 student community is leading the charge!

Vaccines are the future in the fight against NTDs

Neglected tropical diseases (NTDs) are the most common affliction of the world’s poorest people. Thriving in communities that lack access to health services, adequate sanitation and clean water, NTDs blind, disable and disfigure, trapping families in a cycle of poverty and disease. Nearly one in six people globally has at least one of these 17 diseases.

Many of the most common NTDs can be treated and prevented for less than 50 cents per person per year. Pharmaceutical companies, governments and global health organizations – united in part by the London Declaration on NTDs, signed five years ago this week – have worked together to increase access to medicine. In 2015 alone, pharmaceutical companies donated 2.5 billion tablets and have pledged millions more to help control and eliminate NTDs by 2020. By the end of 2015, an estimated 62 percent of people in need of treatment received medicine.

The approach of treating an entire population, rather than just those infected, has helped reduce, and in some cases even eliminate, the impact of some NTDs. Just last year, four countries in the Western Pacific Region eliminated lymphatic filariasis, an extremely painful and disfiguring disease transmitted by mosquitos that can cause swelling of the limbs and genitals. In the Americas, onchocerciasis, also known as river blindness, has been eliminated from all but one region on the border of Venezuela and Brazil. Millions of people are now able to live free from disability and unnecessary suffering.

But efforts to control other NTDs lag. Rates of schistosomiasis, also known as “snail fever,” have increased and the major anthelminthic medicines have so far not had an impact on reducing the global burden of hookworm due to variable efficacy and high rates of reinfection.

New tools such as vaccines have the potential to support greater health outcomes in the most cost-effective manner possible for diseases that cannot be eliminated through treatment alone. AGP DSC_0629-1

At Sabin, we are leading efforts to develop vaccines to combat NTDs affecting the world’s poorest people. Among them is a vaccine candidate for schistosomiasis that is currently in clinical trials. Genital schistosomiasis can create additional health risks, as women with the disease are three to four times more likely to contract HIV. To make matters worse, there is a growing concern that drug resistance could increase. A schistosomiasis vaccine could would not only help control the disease but also be a cost-effective tool for reducing HIV in Africa. Sabin is also developing vaccines for hookworm infection and Chagas disease, among others.

The evidence supporting expanded vaccine research and immunization efforts against NTDs is clear, but this effort needs greater support. Increased funding is needed in order to help accelerate the development and testing of new vaccines, advance products currently in development and create a sustainable path to deliver them to people in need worldwide. Greater investment today will lay the foundation for vaccines to tackle neglected tropical diseases.

 

5 Years Later – 5 Years Closer

Five years ago today – shortly after the launch of the END7 campaign – global partners gathered at the Royal College of Physicians to endorse the London Declaration on NTDs: a set of sweeping commitments to support the global effort to control, eliminate and eradicate neglected tropical diseases. The London Declaration launched a historic partnership between pharmaceutical companies, aid agencies, national governments and NGOs that today supports the delivery of over 1.5 billion NTD treatments per year.

The END7 campaign has been part of the success story of the London Declaration since the beginning, providing a global platform to connect ordinary citizens with meaningful ways to contribute to the fight against NTDs. To celebrate the past five years of progress, here are five ways END7 supporters have helped the world get closer to the end of NTDs:

  1. One million dollars – and counting: Ending the suffering caused by NTDs will require significant financial resources. While NTD treatment and prevention is a “best buy” in global health with an incredible return on investment compared to its low cost, the number of people at risk of these disfiguring and debilitating diseases means that endemic countries and global partners will have to mobilize funding to deliver medicine donated by pharmaceutical companies. END7 supporters have donated more than $1,000,000. These generous donations have funded treatment and prevention programs in more than a dozen countries, training health workers, producing new educational resources and expanding the reach of mass drug administration programs.
  2. Making NTDs go viral: END7’s “How to Shock a Celebrity” video featuring our famous friends Eddie Redmayne, Emily Blunt, Tom Felton, Yvonne Chaka Chaka, Tom Hollander and Priyanka Chopra has been viewed more than seven million times across YouTube, Facebook and other social media platforms. For many viewers, the video was their first introduction to the dramatic effects of NTDs – and a call-to-action. The video has helped raise significant funds for NTD treatment and recruited dedicated END7 supporters to be long-term advocates for this cause.
  3. Building the next generation of global health leaders: Students at universities in more than fifteen countries have started END7 chapters and taken leadership positions with the campaign through the END7 Student Advisory Board and Campus Leaders Council. These young leaders have raised more than $115,000 for NTD treatment, taught courses and led research projects, used campus and local media to raise awareness and enthusiastically supported END7 advocacy efforts urging national and international leaders to support the control and elimination effort. Through the annual END7 Student Advocacy Day, student advocates have met with more than 70 members of the U.S. Congress and heard from inspiring speakers like Global Health Corps founder Barbara Bush about the importance of grassroots advocacy for global health.
  4. Racing towards the end: Last summer, a unique partnership with the Hogwarts Running Club leveraged the power of fandom for good. More than 3,500 people signed up to run the “Fantastic Beasts 5k” in their own communities to support END7 in advance of the release of “Fantastic Beasts and Where the Find Them,” the Harry Potter prequel starring END7 supporter Eddie Redmayne. These athletic fans raised nearly $100,000 to support NTD treatment and prevention programs – accelerating progress towards the end of NTDs!
  5. Putting NTDs on the map – and the calendar: END7 supporters have taken the messages of our campaign to every corner of the globe. In 2016, they celebrated the first NTD Awareness Week, an effort driven by END7 student supporters and echoed by leading global health organizations. The second annual NTD Awareness Week kicks off today – follow #NTDWeek on social media for live updates from END7 supporters around the world!

We are amazed at the creativity and dedication of the END7 community and excited to see what we can accomplish together as we look forward to the end of NTDs!