All posts by END7

My First Advocacy Experience – But Not My Last

The END7 campaign awarded scholarships to three outstanding student leaders to attend the second annual END7 Student Advocacy Day in Washington, D.C. Read scholarship winner Tayler McCord’s reflection on her experience in D.C.:

By Tayler McCord, Michigan State University

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Tayler (second from right) after her group’s first meeting of the day in the office of Senator Elizabeth Warren of Massachusetts.

My involvement with neglected tropical disease (NTD) advocacy and fundraising began only a few months ago when I cofounded an END7 chapter at Michigan State University along with seven other undergraduate students. We each had an interest in public health and saw the importance of getting involved with NTDs. Prior to starting a chapter of END7, my knowledge of these diseases was very limited and I was not aware of the devastating burden of NTDs on global health. As I became more involved with END7 at MSU, I felt even more determined to raise awareness and funding to help eliminate these devastating yet preventable diseases. When I received an invitation from the Global Network for Neglected Tropical Diseases to attend the second annual END7 Student Advocacy Day on March 1 in Washington, D.C., I was ecstatic. I knew that this event would be an incredible opportunity to be involved, firsthand, in the process of advocating for an issue that I had become very passionate about over the past year.

NTDs are a group of diseases that affect one in six individuals worldwide. Not only do they cause disability and disfigurement, NTDs also perpetuate a cycle of poverty by preventing children from attending school and receiving an education, by preventing adults from working and earning an income for themselves and their families, and ultimately preventing impoverished communities from growing and flourishing economically. Thankfully, these diseases can be treated and prevented at an incredibly low cost, making END7’s goal of ending the seven most prevalent NTDs by 2020 attainable – with the necessary political support and funding. Therefore, advocacy to policymakers is a crucial component of END7’s mission.

When I arrived in Washington, D.C., for Student Advocacy Day, I was unsure of what to expect, since I had never before been involved with advocacy on any issue – and certainly not at the political center of the United States on Capitol Hill! But I knew that regardless of my background, this would be a critical opportunity to help raise NTD awareness and provide a political voice for the 1.4 billion individuals afflicted by these diseases.

We began Advocacy Day with a coffee meeting with Senator Roger Wicker of Mississippi. During the meeting, I got to speak with two of the Senator’s staffers about END7 and the United States Agency for International Development (USAID) NTD Program. After briefly speaking with them about what we hoped to accomplish on Capitol Hill that day – building support for the USAID NTD budget – I felt even more confident and enthusiastic about our afternoon meetings with other congressional offices. Following our coffee meeting with Senator Wicker, we listened to speakers from Global Network for Neglected Tropical Diseases, USAID, RTI International and Helen Keller International. Each of these speakers gave a unique perspective on the various efforts from different agencies and organizations to eliminate these diseases and mitigate the debilitating effects they have on those already infected. We were then briefed on our meetings with congressional offices with some advocacy “nuts and bolts” and key points to cover about NTDs and the USAID NTD program.

Following our briefing, we divided into small groups of students from different universities and began brainstorming on how we would go about our meetings. During my group’s four meetings with Senate offices, we each spoke about an aspect of NTDs that we were particularly passionate about, ranging from the effects of NTDs on maternal and child health to the strong private public partnership that has been established to treat and prevent NTDs in 25 countries through the USAID NTD Program. We also made sure to bring up key points about the program, such as the incredibly low cost of just 50 cents to treat and prevent the seven most common NTDs, as well as the 678 million individuals that have received treatment from the USAID NTD Program so far! Since President Obama proposed a $13.5 million dollar cut to the USAID NTD program in his FY17 budget, our main goal of the meetings was to advocate against this cut – and push for an increase of $25 million to $125 million in funding for this program. Without this crucial funding, we risk losing the progress we have made toward ending these devastating diseases. We concluded our meetings by asking each Senator to support the increase in funding for the USAID NTD program as well as to join the Senate Caucus on Malaria and Neglected Tropical Diseases.

After spending one day advocating for NTD funding on Capitol Hill, I truly believe that it will not be my last. Although I felt passionate about END7’s goal before the event, attending Student Advocacy Day instilled in me an even greater passion for this issue and made me even more determined to help change the outlook for those affected by these debilitating diseases. The END7 Student Advocacy Day not only allowed me to participate in this crucial political process but has also inspired me to continue to make my voice heard to our nation’s lawmakers. I am excited to share this passion with others at Michigan State University and with members of our END7 chapter on campus. I hope to inspire and encourage others to participate in advocacy for NTD treatment to help make a positive difference in the lives of millions of people.

Tayler McCord is a senior at Michigan State University majoring in clinical laboratory science with a minor in global public health and epidemiology. She currently serves as the Secretary of END7 at MSU.

We Have the Solution and We Need to Use It: Advocating for the USAID NTD Budget in D.C.

The END7 campaign awarded scholarships to three outstanding student leaders to attend the second annual END7 Student Advocacy Day in Washington, D.C. Read scholarship winner Nicole Spitzer’s reflection on her experience in D.C.:

By Nicole Spitzer, University of Central Florida College of Medicine

I was introduced to the END7 campaign while I was in the midst of planning a Global Health Conference at my medical school, the University of Central Florida College of Medicine. The theme chosen for this year was “The Global Burden of Neglected Tropical Diseases,” which was a topic that, even as a first-year medical student, I knew nothing about. My team and I began to research what NTDs are and how NTDs affect not only those infected, but also their families, the communities they reside in, and the economies of their respective countries. What struck me most while I was learning about NTDs was this question: why is this such a giant problem if many of these diseases are easily treated and cured? My faculty advisor, Dr. Judith Simms-Cendan, who has completed research on the NTD schistosomiasis, pointed my team to the END7 campaign. We decided to donate a portion of conference registration fees to the campaign and invited Dr. Maria Elena Bottazzi of the Sabin Vaccine Institute, home of END7, to deliver the keynote at the event. I became so interested in NTDs at the conference that when it was over and I received an invitation to attend the second annual Student Advocacy Day in Washington, D.C., I knew I wanted to make the trip.

Nicole after a meeting in the office of her representative, Alan Grayson of Florida.

Nicole after a meeting in the office of her representative, Alan Grayson of Florida.

My trip to D.C. was nothing short of a whirlwind, as I was there for only 26 hours! On my flight from Florida to D.C., I was vigorously preparing for the four meetings I was scheduled to attend the next day in order to advocate for funding for the USAID NTD Program. I was delighted to see that my team would be meeting with the staffers of two Florida Members of Congress, Senator Marco Rubio and Representative Alan Grayson. As a constituent of their state, I knew that my team would have their full attention to advocate and raise more awareness for NTDs. I also knew that I would be able to provide a different angle as a medical student and future physician and I looked forward to meeting the other students I would be working with.

Before we headed into a long afternoon of meetings, we were briefed by representatives from USAID, RTI International and Helen Keller International, who provided us many compelling facts we could bring into each meeting. Kalpana Bhandari from the ENVISION project at RTI international shared personal stories that were very touching. Some of her family members live in Nepal, including her aunt, who works as one of the community health workers who lead local mass drug administration (MDA) campaigns. Emily Toubali, a representative from Helen Keller International, shared the details of a plan being rolled out to treat the morbidity and mortality associated with blinding trachoma and lymphatic filariasis, commonly known as elephantiasis. As a medical student, hearing these stories and learning about these programs has inspired me to become more involved in the global NTD effort in the future. From these briefings, we learned many strategies on how to conduct each meeting with a congressional office, highlighting the most compelling reasons for each member to support the USAID NTD Program budget.

Our afternoon of meetings was very successful, as my team consisted of students from a variety of different backgrounds, each offering a new and unique perspective on the effect that NTDs have on the communities that are affected and how the United States can help. As a future physician, my main argument was that we need to care for all human beings, regardless of where they are from. We have the solution and we need to use it. One student in my group, Beza Teferi, is originally from Ethiopia and has seen and experienced the effects of NTDs herself. Another student, Imani Butler, was able to provide the perspective from a research point of view. Her message was that we have a simple solution to these problems, so why not use them. Malvika Govil, a student from Rice University, discussed how the money allotted has a multiplier effect — for every dollar invested in treatment programs, pharmaceutical companies donate $26 worth of medicine. Finally, Sujay Dewan, from the University of Pennsylvania, delivered the request — an increase of the USAID NTD Program budget to $125 million to ensure that the progress of the last decade continues and control and elimination efforts succeed, so we do not lose ground on the work that we have already accomplished.

Our approach really seemed to resonate in the meetings. Senator Lindsey Graham from South Carolina and Senator Marco Rubio from Florida are both proponents for global health and we received very positive feedback from their staffers. The staffers of Colorado Senator Cory Gardner and Florida Representative Alan Grayson had many questions for us, which really allowed us to explain in depth what NTDs are and how they are affecting the world. We finished our meetings confident that we had made an impact and helped build support for the USAID NTD Program in Congress.

Barbara Bush, CEO and co-founder of the Global Health Corps, captured the central tenet of our advocacy best during her keynote our closing reception: “We are all here because we agree on one thing: health is a human right.” She also emphasized that, “great ideas don’t change the world, great people do,” which is why we need to act on these ideas now. As young leaders in our schools and communities, we have the passion and the voice to do so.

Nicole meets Barbara Bush, CEO and co-founder of Global Health Corps, at the closing reception of the second annual END7 Student Advocacy Day.

Nicole meets Barbara Bush, CEO and co-founder of Global Health Corps, at the closing reception of the second annual END7 Student Advocacy Day.

Nicole Spitzer is a first-year medical student at the University of Central Florida College of Medicine. Learn more about her experience at the END7 Student Advocacy Day in this article.

To Helminth It – Let’s Go to D.C.

The END7 campaign awarded scholarships to three outstanding student leaders to attend the second annual END7 Student Advocacy Day in Washington, D.C. Read scholarship winner Cyrus Ghaznavi’s reflection on his experience in D.C.:

By Cyrus Ghaznavi, Rice University

Nearly a year after the first ever END7 Advocacy Day in April of 2015, I was back on a plane headed nonstop to Reagan National Airport. The second annual Advocacy Day was less than 24 hours away!

Over the past year, Rice University’s chapter of END7 has grown significantly. Our general membership and committees have expanded and awareness of our cause on campus has blossomed. We have hosted trivia nights, fundraisers, Super Smash Bros video game tournaments, petition drives, and much more. Consequently, what once started as a relatively obscure club on campus has now gained significant traction within the Rice community.

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Cyrus (far right) and his group meet with Representative Ami Bera of California on the second annual END7 Student Advocacy Day.

However, though we have worked extensively to advocate for NTDs “inside the hedges,” the Rice chapter of END7 strongly believes that official policy change is needed to successfully control and eliminate the seven most common NTDs. In fact, our mission states that “END7 at Rice is an organization that strives to raise awareness…for our mission with local and national policymakers.” And so, when I was faced with the question of whether or not to attend the second annual END7 Advocacy Day, it was a no-brainer.

The momentous day was kicked off by Senator Roger Wicker, co-chair of the Senate Caucus on Malaria and NTDs, who had invited the END7 group to morning coffee. After socializing and meeting our morning coffee quota, we took pictures with the Senator, who explained that NTDs are an issue very near and dear to his heart. After coffee, we were welcomed by Dr. Neeraj Mistry, Managing Director of the Global Network for Neglected Tropical Diseases. We were then presented with informative presentations by representatives from the U.S. Agency for International Development, RTI International, and Helen Keller International, before grabbing lunch in our small groups.

Last year, I had the pleasure of working with Kathryn McGrath, who works with END7 as a member of the Global Network staff, as the leader of my small group. Perhaps not coincidentally, she was my group’s leader again, so we immediately had a dynamic and strategy for how to pitch our case to the four House Representatives we would be meeting that day. Working with my teammates Antonia, also from Rice University, and Elaine, from the University of Texas at Dallas, we devised a division of labor as to which points we would each hit in our meetings with staff.

Kathryn started each meeting with a brief introduction to END7, after which Elaine jumped in by sharing some of USAID’s most persuasive statistics. One of every six people globally suffers from one of the seven most common NTDs. For every $1 invested into the program, $26 worth of donated pharmaceuticals are leveraged. For a mere $0.50, an at-risk individual can be treated and protected from the seven most common NTDs for a year. So far, 1.4 billion treatments have been distributed to almost 700 million individuals. Antonia would then shift gears and relay some of the more human, emotional aspects of the program and NTDs. She mentioned that children miss school and parents miss work when infected, reinforcing the cycle of poverty. She went over some of the disfiguring and debilitating symptoms of these seven diseases, and wrapped up by talking about the stigma associated with them. At this point, I pounced by synthesizing what those before me had mentioned. I asked if the Representative would support increasing USAID NTD funding by 25 percent instead of allowing it to be cut by 13.5 percent. Additionally, I implored the staffers to encourage their Representatives to join the Congressional Caucus on Malaria and NTDs, if they were not members already. “This is not the time to lose momentum – USAID funding is critical during this watershed time,” we would conclude.

We had four successful meetings with Representative staffers, and even got to meet one of the Representatives in person: Rep. Ami Bera (D-CA), with whom we briefly chatted and took some pictures! He was a very unique case, given that he has an M.D. and can thus see NTDs from both a medical and political standpoint. As a pre-medical student studying both biology and policy, I felt that my interaction with Rep. Bera was particularly meaningful – especially since my group also visited his office during the 2015 END7 Student Advocacy Day!

At the end of the day, we all attended a reception where Barbara Bush, CEO and co-founder of Global Health Corps, and Peter Hotez, president of the Sabin Vaccine Institute, spoke to the END7 advocates. Ms. Bush’s speech was truly moving and inspiring, urging us to global health action. Dr. Hotez recounted the beginnings of END7 and the USAID campaign, putting all of our advocacy into a unique, historical context.

And before I knew it, the day was over. As a group of nearly 50 students and leaders, we had spoken to almost 40 congressmen/women or their staff. Our pitches were not partisan, nor were they communicated out of self-interest: we were all passionate voices in the realm of NTDs, and we were all thrilled to be in the Capital.

Speaking for Rice, I cannot express how proud I am of the growth and commitment I have seen in just one year’s time. Last year, three students, including myself, attended this trip. This year, we had almost 20, comprising the large plurality of the advocates who attended (even compared to the schools in Washington)! I can only imagine how much more growth we will see in the coming years. Here’s to counting down to next year’s advocacy day!

Barbara Bush with student advocates from Rice University at the END7 Student Advocacy Day closing reception.

Barbara Bush with student advocates from Rice University at the END7 Student Advocacy Day closing reception.

Cyrus Ghaznavi is a junior at Rice University studying Biological Sciences & Policy Studies. He represents Rice on the END7 Campus Leaders Council and participated in the END7 Student Advocacy Day in 2015 and 2016.

You Signed – We Delivered

Members of the END7 team with our petition defending the U.S. NTD budget.  Do you see your name?

Members of the END7 team with our petition defending the U.S. NTD budget. Do you see your name?

The day after the United States government delivered its one billionth treatment for neglected tropical diseases (NTDs), we headed up to Capitol Hill to deliver a special message to Congress.

In just eight years, the USAID NTD Program has helped deliver $6.7 billion in donated medicines around the world. But if the President’s $13.5 million budget cut is approved, the progress made against these diseases may falter.

Thousands of people asked Chairwoman Kay Granger and Ranking Member Nita Lowey, of the House Appropriations Subcommittee on State and Foreign Operations, to protect funding for NTD treatment.

When we printed all the names, the sheet was over twenty feet long! So long that we attracted curious stares from Congressional staff walking out of the Longworth House Office Building as we posed with the scroll on the steps outside.

We delivered a copy of the petition to Congresswoman Kay Granger’s office, and another went right to the House Appropriations Subcommittee, who is responsible for determining the budget.

Neglected Tropical Diseases (NTDs) are the most common diseases of the world’s poor. NTDs disable and debilitate one in six people worldwide, perpetuating a cycle of poverty that continues from generation to generation.

Worldwide, the USAID NTD program has delivered donated drugs to more than 465 million people in 25 countries, supporting large-scale integrated treatment programs in which entire communities and regions are treated for the most common NTDs all at once. This is one of the most cost-effective and innovative partnerships in global health.

Thanks to you, we’re hopeful that funding for the USAID NTD Program will not be cut but rather expanded.

Watch our photo slideshow to view more pictures from the petition delivery.