Note: The first hyperlink requires a free account to Medscape news, a leading purveyor of medical news. This Newsletter is also longer than usual, but the content is essential for understanding LIN’s strategy and rationale as we take our next steps.
Ten years ago, I came across a scene that changed my life and significantly altered the way Chronic Kidney Disease of undetermined cause (CKDu) was being addressed. Acting on a tip while filming Banana Land, our team went to Chichigalpa, Nicaragua. Banana workers told us that while the pesticide DBCP had sterilized them, their friends and family who worked in sugarcane were dying of kidney disease.
Former sugar cane worker Julio Lopez, 35, suffers through the end stages of CKDu in his home in Chichigalpa, Nicaragua on Jan. 5, 2015. He worked for 15 years in the cane fields before getting sick.
Photo: Ed Kashi / VII for LIN
We arrived to Chichigalpa at night. A number of sugarcane workers, all dying from CKDu, lay in hammocks outside of a sugar mill’s company gate in protest. A line of family members and friends were in a face-off with Nicaraguan police who blocked the entrance. There had been a scuffle, tempers were high.
The police demanded to question our producer. The next day we received a phone call from Burson Marsteller, the powerful PR company. Their Miami office insisted there was nothing to see, and that the sugar company had nothing to do with the disease or the issues we had seen that night.
There is one way to ensure a documentary team is going to stick around, have a PR firm tell them “there is nothing to see.”
Members LIN’s WE Progarm conduct early morning data collection of sugarcane workers at a field outside of Apopa, El Salvador. The WE Program studies workers’ renal function while improving labor conditions, aiming to reduce rates of CKDu.
Photo: Tom Laffay for LIN
Over the next months we learned more about the disease, encountered La Isla de Viudas (The Island of Widows from where we take our name) and worked with local researchers at SALTRA and CISTA in order to identify how we could address what was happening. Several months later La Isla Foundation was formed. We had a strong presence in Chichigalpa, and with our colleagues at CISTA and SALTRA, built an exceptional international research network.
In Nicaragua we rehabbed schools and health clinics, improved sanitation, built wells and a water distribution system, offered job training, and documented repression and violence, contracting issues and child labor in the sugar sector. During that time we worked with international media to shine a light on CKDu. In that process, we formed a partnership with Ed Kashi and Talking Eyes Media. Their films featured in National Geographic and The Atlantic, captured our work in Central America and our pivot to a global outlook. That work is being further supported by National Geographic as we document those addressing CKDu in Peru.
Our focus on international research and policy was due to a confluence of events that lead to our shift from a locally focused NGO, to La Isla Network, a platform for engagement, research and policy work on CKDu Internationally. Concurrent with that, we had come to the decision to get out of the intrigue being fomented by narrow interests that stigmatized our work in Central America. The assault on La Isla culminated with Tom Laffay and I both being deported from Nicaragua. Our international vision was made easier by the quality of our work being recognized internationally. Several international institutions and researchers reached out for collaboration in Sri Lanka, India and other countries impacted by CKDu.
The Sarpanj, or community leader, speaks to the LIN communications team about CKDu prevalence and the 126 widows to the disease in his village. Balliputtuga, Andhra Pradesh, India.
Photo: Tom Laffay for LIN
Our global strategy is in line with what policy makers and the press need to see. Journalists have already documented the misery. They have been clear on wanting to see solutions, and wanting to see more research on the scale and scope of CKDu. This falls directly in line with LIN’s WE Program, the DEGREE prevalence studies, and the community cohort in Nicaragua. Policy makers want to know the scope, scale and burden of this disease and what can be done about it. These things can be accomplished via these initiatives. Knowing where people are affected, whether interventions can slow or prevent the onset of disease, and ascertaining if we can screen for those likely to develop CKDu, allows the economics to be extrapolated and the responses calculated and initiated.
Today, LIN and colleagues are being asked by the Indian Government to provide insight into addressing CKDu. The very industry players with whom we were struggling have helped us return to Nicaragua in order to develop effective and scalable interventions together. This is being driven by the Adelante Initiative. Adelante appropriately means, onwards. Via the initiative we will examine and improve workplace practices in Nicaragua and ensure those learnings are applied regionally and internationally in the sugar sector and beyond.
Young workers participating in a workload measurement and heat stress study take a break under the shade canopies provided as part of the WE Program in sugarcane field outside of Los Almendros, Cuscatlan, El Salvador.
Photo: Tom Laffay for LIN
Challenges remain. Communities are still in peril. I was reminded of this when I returned to Nicaragua to formalize the Adelante Initiative. After a productive meeting, I went out to the La Isla community and other impacted areas. Those affected and those at risk need quality work done and support for those doing the work from brands like Coke and Unilever, governments, foundations and development banks. We have a solid strategy. It merits solid support.
In this age of alternative “facts”, we find that CKDu is not immune from spin. We are contending with ongoing PR and back channel efforts from some players not participating in the Adelante Initiative. Claims include that everything has always been okay with how CKDu was addressed by industry. This rewriting of history is unhelpful. It is time to work together, but the Orwellian effort to erase history and create doubt prevents us from learning from it and having meaningful insights that can be applied to CKDu. Further, it undermines good faith and trust and gives those on the fence about providing badly needed support an excuse to put resources elsewhere. We should not wallow in the past, but we should learn from it, and leverage the change we all wish to see. There are many more countries outside of Central America and commodities aside from sugar where CKDu is an issue. It will take teamwork and integrity in order to help those at risk and those already sick.
LIN’s roots are in Nicaragua. We return in a new capacity; to strengthen concepts so they may be used globally. We are reminded of where we come from, and for whom we work: those affected by CKDu. I conclude in recognizing the tireless work of Catharina (Ineke) Wesseling, specifically her work with Sandra Peraza and Aurora Aragon of SALTRA, and our departed friend Cecelia Torres. These exceptional women did the first meaningful prevalence studies on CKDu. Their rigor and acumen formed the basis of the DEGREE initiative, the tool with which we will demonstrate the scale and scope of CKDu globally. This work is providing the foundation from which action can be taken at an appropriate scale.