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.

DSC_0077

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.

“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

END7 Raises $1,000,000

END7 just surpassed the $1,000,000 mark in funds raised to fight neglected tropical diseases (NTDs), with more than 25,000 donations since the launch of the campaign. These contributions support efforts by national ministries of health to build sustainable NTD programs based within endemic countries.

Projects funded by END7 have given the gift of good health to millions of people in twelve countries, training local health workers and volunteers, transporting and administering donated medicines, providing clean water and educating communities on safe hygiene habits to avoid infection. END7 is a campaign of the Sabin Vaccine Institute to end the seven most common NTDs. Sabin’s mission is to end unnecessary suffering from preventable diseases. 100 percent of END7 donations go directly to partners in endemic countries to extend NTD programs and fill funding gaps.

Your donations helped Kenya’s Ministry of Health keep children like Neema worm-free and in school. They helped Helen Keller International provide medication for Sahr Gondo and his family so he could return to work and care for his young son. They made sure Pwint Yamone Thin and millions of other children in Myanmar could continue to grow, learn and reach their full potential.

Saleimatu Kabia, 4, holds a sign reading "Thank you END7" at the Tombo community health center in the town of Tombo, Sierra Leone on Tuesday July 17, 2012.

Saleimatu Kabia, 4, holds a sign reading “Thank you END7” at the Tombo community health center in the town of Tombo, Sierra Leone on Tuesday July 17, 2012.

Reaching one million dollars is an incredible milestone, but our work isn’t finished yet. More than one billion people still suffer from the seven most common NTDs even though these diseases are preventable with treatment, education and sanitation. Elephantiasis, river blindness, schistosomiasis, trachoma, roundworm, whipworm and hookworm prevent communities from thriving. We can break this cycle of poverty – but not without you. We need your continued support if we are to see the end of NTDs.

Follow along this month as we tell stories of #END7OneMillion to learn how you can build on this momentum and accelerate progress toward a healthy, NTD-free world.

NTD and de-worming project in Nigeria awarded $50,000 funding

 

A Sightsavers’ project in Nigeria has been awarded a grant of $50,000 from the Sabin Vaccine Institute’s END7 campaign to help tackle neglected tropical diseases (NTDs). This generous grant will have a significant impact on the future of communities in Kebbi State in Nigeria and will enable Sightsavers to get one step closer to eliminating five NTDs in the state.

NTDs can have a horrifying effect on people of all ages. Symptoms of these devastating diseases include kidney disease, blindness, malnutrition, anaemia, and even death.  NTDs can stop people from working, living independently, or even from getting an education. Many of these symptoms can be alleviated through treatment and stronger health systems.

END7 is an international advocacy campaign that’s seeking to raise the awareness and funding necessary to control and eliminate the seven most common NTDs. The campaign is managed by the Sabin Vaccine Institute and has mobilized a diverse and growing community of supporters from countries around the world dedicated to supporting the fight against these diseases.

Sightsavers’ Kebbi State NTD elimination program is targeting the elimination of five devastating NTDs including schistosomiasis, soil-transmitted helminths, trachoma, river blindness and lymphatic filariasis. With END7’s support, Sightsavers is working with the Federal and Kebbi State Ministries of Health to train more than 1,000 primary health workers and more than 7,000 community volunteers to undertake mass drug administration (MDA) that will help protect nearly 6 million people in some of Nigeria’s poorest rural communities.

END7’s funding will also support the training of 355 teachers to manage school-based MDA to protect children from schistosomiasis. Sightsavers is collaborating with the Kebbi State Ministry of Education to prepare schools and teachers to get treatment to all enrolled school children. This work is already beginning to impact Nigerians, including Manir Mamuda, a 15 year old boy who lives with his parents in the region. Manir is training to become a carpenter, but for the past year Manir was suffering from the symptoms of schistosomiasis. Despite seeking help from a traditional healer in his community, his symptoms were not improving.

Luckily, Manir heard about the free treatment being distributed at his local school during a community awareness event. He decided to visit the school while treatment was being distributed and received treatment he needed.

“I was measured with a tape and given 4 tablets of the drug, which I took immediately,” said Manir. “After one week, I stopped seeing blood in my urine. The medicine is good because it has helped me and I am happy. I hope to continue to take it. I feel very well now and can comfortably learn the carpentry skills I need to earn a living”

Sightsavers’ Nigeria Country Director, Sunday Isiyaku has also seen the positive impact of these services in communities across the country. “Thanks to Sabin’s END7 campaign in 2016, we are able to protect the most vulnerable communities in Kebbi state from these painful and disabling diseases. The project will reach people that usually cannot find their way to health centers to access health services including women, the elderly and people with disabilities. By using community outreach and door-to-door approaches, our health workers and community volunteers are going the extra mile in reaching these groups.”

“Sabin has a proud history of vaccine advocacy, and we are pleased that we can further this mission through our recent grant to Sightsavers in Nigeria,” said Amy Finan, CEO of the Sabin Vaccine Institute. “In a region where more than 5 million people are at risk of contracting an NTD, Sabin’s grant will enable Sightsavers to fill a gap in the current health system by providing efficient, cost-effective control efforts. This project has the potential to improve quality of life for millions of Nigerians, and I look forward to following its impact in the months and years ahead.”nigeria

The recent grant awarded to Sightsavers by the Sabin Vaccine Institute will enable vital NTD control efforts to continue in the state of Kebbi. By promoting sustainable health systems in the region, Nigerians living in Kebbi and beyond will be able to live without the burden of these debilitating diseases.

This post was originally published on Sightsaversusa.org.