Being a Witness to Hidden Suffering
Feb 02, 2017
By: Emily Conron, Resource Development Officer, Sabin Vaccine Institute
James Porter, Associate Director, External Relations, The END Fund
“The effective addressing of entire chapters of illness, as is the case with ‘rare’ and ‘neglected’ diseases, requires not only qualified and diversified skills and abilities in health-care but also ones that are beyond health care… At the base of every initiative, however, lies, first and foremost, free and courageous good will directed towards the solving of this major problem of global health: an authentic ‘wisdom of the heart’.”
– Pope Francis
The END Fund and the Sabin Vaccine Institute were honored to attend “Towards a Culture of Health that is Welcoming and Supportive at the Service of People with Rare and Neglected Pathologies,” a conference hosted by the Pontifical Council for Healthcare Workers at the Vatican this past November. This high-level meeting, organized in partnership with Sabin, was a signaling to both the rare disease and neglected tropical disease (NTD) communities that Pope Francis’s commitment to marginalized people is far reaching.
Dr. Peter Hotez and James Porter at the Vatican
Throughout the conference it was clear through statements from His Eminence Cardinal Pietro Parolin, the Secretary of State of the Holy See, His Eminence Cardinal Peter Kodwo Appiah Turkson, Prefect of the new Dicastery for the Promotion of Integral Human Development, Msgr. Jean-Marie Mupendawatu, Secretary of the Pontifical Council for Health Care Workers, and his Holiness, Pope Francis that the Vatican is committed to giving a voice to these important issues.
Upon reflecting on the conference, the conversations that began that week at the Vatican could continue from both an advocacy and resource mobilization perspective – both of which are needed for ending NTDs.
Dr. Peter Hotez, president of the Sabin Vaccine Institute and Chair of the END Fund Technical Advisory Council, gave the opening keynote on NTDs, reflecting that “We need prophetic voices in [NTD affected-] countries to call attention to the health problems affecting their poorest citizens. Catholic leaders could be a witness to this hidden suffering, urging policymakers to take strong action and invest in treatment and prevention.” He ended his remarks with several calls-to-action for Catholic leaders:
First, Catholic institutions can directly support NTD treatment and prevention programs, working through the Church’s vast network of hospitals, health centers, schools, and parishes to reach every at-risk community with treatment and encourage healthy behaviors to prevent NTDs. Second, Church leaders in communities affected by NTDs can minister to sick individuals and their families and tackle stigma and discrimination. Third, the Church can mobilize much-needed financing by encouraging charitable giving by Catholic institutions and individuals and public investment by world leaders to support NTD treatment and advance research. Indeed, a coordinated push at every level of the Church could be the tipping point in the effort to control and eliminate these diseases for good.
As a global advocate for issues affecting the poor and vulnerable, the voice of Pope Francis is a welcome addition to the effort to draw attention to NTDs and advocate for policies and investments necessary to treat and prevent them on a large scale. The conference was a unique opportunity to educate clinicians and researchers from more than fifty countries about NTDs and engage them in discussion about creative partnerships for to advance advocacy, community education, and treatment delivery to support the NTD control and elimination effort.
At the end of the conference, Dr. Hotez noted that the Vatican’s focus on neglected diseases comes at a pivotal time. With the political climate in both Europe and the United States making the future of NTD funding from bilateral donors more uncertain, Dr. Hotez emphasized how important it is going to be to have other voices join the conversation, including private philanthropists.
According to the Annuario Pontificio 2016
, the number of baptized Catholics worldwide is 1.27 billion people, or about 17.8% of the population. While certainly all of these people won’t be in a place to give, there remains great possibility given the size and diversity of this population. In many parts of the world, Catholic religious are even the largest provider of health services. As Dr. Susan Raymond, Executive Vice President for Research and Analysis at Changing Our World notes in a recent white paper
, “geographic scope and breadth of service offerings provide unparalleled assets for global development. Those characteristics are of equal merit in philanthropy, allowing organizations to find specific donor alignment from among a myriad of actions.”
The same white paper from Changing Our World also shows that of the $1 billion in revenue for the two largest Catholic relief institutions in the U.S., around $600 million comes from private philanthropy. This points to the interest and appetite for giving in the private philanthropic space.
As we look towards building on the momentum created by this conference, having Pope Francis and other Catholic leaders speak about NTDs is a fantastic step forward in making the case for more investment from those who truly want to help the poorest of the poor.
At the end of the conference, Pope Francis left us with some thoughts on the challenges and opportunities that lie ahead:
The challenge, from an epidemiological, scientific, clinical/care, hygienic and economic point of view is, therefore, enormous because it involves responsibilities and commitments on a global scale: international and national health-care and political authorities, health-care workers, the biomedical industry, associations of citizens/patients, and lay and religious volunteers. This is an enormous challenge, but not an impossible one. Given the complexity of the subject, indeed, a multidisciplinary and joint approach is necessary; an effort that calls on all the human realities involved, whether institutional or otherwise.