Category Archives: NTDs

Paul VI Hall photo

All Roads Lead to Rome: the Path to the Vatican Conference on NTDs

The Pontifical Council for Health Care Workers is hosting an International Conference on neglected tropical diseases (NTDs) and rare diseases November 10-12, 2016 at the Vatican, “Towards a Culture of Health that is Welcoming and Supportive at the Service of People with Rare and Neglected Pathologies.” Sabin President Dr. Peter Hotez will deliver the opening keynote on NTDs, an patient with the NTD lymphatic filariasis (elephantiasis) has been invited to offer a reflection and the event will end with an audience of more than 5,000 conference participants, patients, and family members with Pope Francis in Paul VI Hall.

The International Conference is expected to attract more than 500 participants from around the world, including many senior Catholic officials as well as leading NTD researchers and policymakers, to discuss both treatment and research issues related to NTDs and rare diseases. Notable speakers include Beatrice Lorenzin, the Minister of Health of Italy; Anthony Tersigni, CEO of Ascension, the world’s largest Catholic health system; and Ariel Pablos-Méndez, USAID Assistant Administrator for Global Health.

Sabin is grateful to have had the opportunity to work with the Pontifical Council to plan this exciting event. Attention by Pope Francis and other religious leaders could make a tremendous impact on the NTD control and elimination movement. As the world’s largest provider of healthcare services, the Catholic Church could play a significant role in this effort. A coordinated push by religious leaders and faith-based institutions to support the global effort to control and eliminate these diseases would improve the lives and safeguard the dignity of hundreds of millions of the world’s poorest people.

We’ve all heard the proverb “All roads lead to Rome” – the simple truth that many approaches can lead to one outcome. On November 10, three years of dialogue between Sabin and the Pontifical Council for Health Care Workers – along many different paths – will culminate in Rome at this first-of-its kind conference.

Sabin cultivates partnerships across many spheres to advance the fight against infectious and neglected diseases. In 2013, Sabin established a relationship with the Pontifical Council for Health Care Workers, created by Pope John Paul II in 1985 to coordinate and promote the health care work undertaken by the Church around the world and monitor national and international health care efforts to determine their pastoral repercussions for the Church. Sabin experts began meeting with leadership of the Pontifical Council, including its late President, Archbishop Zygmunt Zimowski, and Under-Secretary, Father Augusto Chendi, in Rome to discuss the global NTD control and elimination effort and the critical role of the Catholic Church in providing healthcare and other social services around the world, particularly in poor communities at risk of NTDs. At the request of the Pontifical Council, Sabin prepared a concept note outlining a vision of four specific contributions the Church could make to advance the NTD effort: raising awareness of the burden of NTDs, both internationally to policy makers and locally within endemic countries; ministering to patients and their families to reduce stigma and fight discrimination; directly supporting NTD treatment and prevention programs through the Church’s vast network of hospitals, health centers, schools and parishes; and mobilizing resources from Catholic institutions and individuals and public investment by world leaders to support NTD treatment and advance research.

Sabin continued an exciting dialogue with Church leaders into 2014, facilitating an invitation to the president of the Pontifical Council, Archbishop Zimowski, to speak at the April 2014 launch of the second progress report of the London Declaration on NTDs at the Institut Pasteur in Paris, hosted by Uniting to Combat NTDs. While Archbishop Zimowski was unable to attend, he wrote a letter to conference participants at the event which stated:

“The Church, in her message of evanglisation, which is also expressed in capillary socio/health-care action in regions of the world that are still afflicted by neglected diseases, perceives how urgent it is, however, to make strengths converge and to animate public opinion in the face of pathologies which in less advanced countries are still endemic and constitute some of the causes that make their civil, social and economic development difficult.

“This shouldering of responsibility is seen as being urgent by this Pontifical Council of the Holy See as well, and to such an extent that is has been envisaged for the month of May in 2015 an international scientific congress, organized in the Vatican, which will specifically address the subject of ‘Rare and Neglected Diseases,’ ‘Diseases of Solidarity.’

“…While I in my official capacity…wish all the participants fruitful deliberations in the work that awaits you, I also hereby affirm that the results that you achieve will be held in due consideration, as will the experiences that you represent, in preparing for the next international scientific congress envisaged for next year in the Vatican, thereby ensuring a fruitful cooperation.”

Encouraged by the Pontifical Council’s decision to host an international conference to address NTDs, Sabin began advancing a faith-based message about NTDs in the media, including in a TIME op-ed entitled “White House, Congress Should Remember Pope Francis During Budget Process.” Then, ahead of Pope Francis’ historic address to the U.S. Congress in September of 2015, Sabin hosted a reception on Capitol Hill to celebrate the bipartisan commitment of the U.S. government in the fight against NTDs and build further support for the NTD cause among Members of Congress, the Administration, the broader policy community, private sector partners and Catholic leaders. Speakers at the “Call to Compassion” event included Rep. Chris Smith (R-NJ), member of the Congressional Caucus on Malaria and NTDs; Reverend Thomas Streit, C.S.C., Founder of the University of Notre Dame Haiti Program; Dr. Ariel Pablos-Méndez, Assistant Administrator for Global Health and Child and Maternal Survival Coordinator at USAID; and Dr. Leonard Friedland, Vice President and Director of Scientific Affairs and Public Health for Vaccines in North America at GlaxoSmithKline (GSK). Reverend Pat Conroy, S.J., Chaplain of the U.S. House of Representatives, concluded the program with a benediction.

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The next week, in his speech to Congress, Pope Francis reflected, “How much progress has been made in this area in so many parts of the world! How much has been done in these first years of the third millennium to raise people out of extreme poverty! I know that you share my conviction that much more still needs to be done…[and that] the fight against poverty and hunger must be fought constantly and on many fronts, especially in its causes.”

Building on this speech, and another delivered by Pope Francis to the United Nations General Assembly just before the ratification of the Sustainable Development Goals (SDGs), Sabin CEO Michael W. Marine and Catholic Relief Services CEO Carolyn Woo co-authored an op-ed calling for the U.N. to formally adopt a global indicator for NTDs in the SDGs’ monitoring framework as a “demonstration of our solidarity with the poor.” Two weeks later, in a speech to U.N. officials in Kenya, Pope Francis explicitly called for international agreements to be shaped around the needs of the poor: “Certain health issues, like the elimination of malaria and tuberculosis, treatment of so-called orphan diseases, and neglected sectors of tropical medicine, require urgent political attention, above and beyond all other commercial or political interests.”

Sabin’s dialogue with the Pontifical Council continued into 2016 as planning for the conference, which had been rescheduled to November, accelerated. After a long battle with cancer, Archbishop Zimowski, president of the Pontifical Council, passed away in July. He will be remembered as a compassionate leader in the effort to improve global health.  His commitment to addressing the health needs of the poor was integral to the decision to host the International Conference. It is clear that he was animated by the “missionary impulse” Pope Francis called the Church to rediscover in Evangelii Gaudium, to “go forth to everyone without exception…but above all the poor and sick” [48]. Msgr. Zimowski’s words and actions as the President of the Pontifical Council were an inspiration to all seeking to respond to this challenge.

Photo from June 2016 meeting

(Left to right) Fr. Augusto Chendi, under-secretary of the Pontifical Council for Health Care Workers, Sabin’s Emily Conron, Sabin CEO Amy Finan, Ruggero Panebianco and Giuseppe Recchia of GlaxoSmithKline meet in Rome to plan the International Conference.

In August, Pope Francis announced the creation of a new Dicastery for Promoting Integral Human Development, which will incorporate the Pontifical Councils of Justice and Peace, “Cor Unum”, Health Care Workers, and Migrants and Itinerant Peoples. This dicastery, to be led by Cardinal Peter Turkson of Ghana, will launch January 1, 2017, after which the four councils it replaces will cease their duties as separate bodies. Thus, the XXXI International Conference will be one of the final events hosted by the Pontifical Council for Health Care Workers, though the new Dicastery is expected to prioritize global health issues like NTDs through its new structure.

Sabin is grateful to have played a part in the planning of this historic event. As one of the world’s largest healthcare providers, the Catholic Church is in a unique position to leverage its influence in service of the global effort to control and eliminate NTDs by expanding treatment coverage, advancing research and development and ensuring the basic rights and dignity of patients. The International Conference has the potential to bring new partners, unique commitments, and renewed energy to the effort to end NTDs – for good.

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.