It’s a little more than an hour by car from the village of Léogâne to the Port-au-Prince office of Dr. Joseline Marhone, Haiti’s director of food and nutrition in the Ministry of Public Health and Population. It’s an instructive ride. The car is ventilated for passengers only by rolling down the windows, and then only when it’s moving, which isn’t as often as those accustomed to milder climates may like. Even in the city, the roads are winding, and the route seems devoid of right angles — indeed, of any angles at all. It’s a circuitous route to an unmarked destination. The office itself bears no markings of a government building. It’s literally a cargo container, roughly the size of a small semi-tractor trailer, with a hole cut in the side to accommodate a wall-mounted air conditioning unit, and a door affixed to a cut-out opening at the front.
“The future is positive. We’re not far from 2020.”Dr. Joseline Marhone, director of Haiti’s Food and Nutrition at the Ministry of Public Health and Population
At the least, it’s an unlikely place for Marhone to wax optimistic about her country’s prospects for dealing with lymphatic filariasis (LF), a cruel and debilitating mosquito-borne disease that has plagued Haiti for generations. Nevertheless, Marhone’s countenance, already bright, gleams when the subject is raised.
“The future is positive,” Marhone says with a smile. “We’re not far from 2020.”
She’s speaking both literally and metaphorically. Notre Dame founded the Haiti Program in 1997 with the ambitious finish line of 2020 in the race to eliminate LF in the nation. The disease affects about two million Haitians, and is present in 118 of the nation’s 140 communes (similar to American counties). Moreover, it’s the second leading cause of debilitation and disfigurement in the world, affecting 120 million people, while a total of 1.2 billion people live at risk of infection in parts of the world where the disease is present.
Such was the plight that compelled Rev. Thomas G. Streit, C.S.C., the Haiti Program’s founder and principal investigator. Today, Notre Dame's involvement is aided by an engaged Haitian government and a host of partner organizations working on a three-pronged attack on LF. In recent months, some encouraging test results have put 2020 — not just the year, but also its symbolic meaning — in square view.
It’s difficult to overstate the impact of LF on those who contract the disease. Often, diseases with a high rate of mortality seem to gain notoriety. Lymphatic filariasis is not in itself often fatal, but is no less cruel. LF is caused by worm parasites that wage war with the body’s defenses, and can render the lymphatic system totally dysfunctional. The result is insufficient circulation of the lymph fluid, resulting in build up that causes massive swelling (commonly referred to as elephantiasis), and then a lifetime of secondary infections, in the extremities and genitals. While the grotesque disfigurement that limits physical mobility is easily seen, the psychological, social and economic ravages of the disease are less visible, but no less difficult to bear.
…in a place where most have so little, victims of LF seemingly occupy the space at the bottom of the social ladder.
The non-physical burdens are the kind first mentioned by LF patients waiting for treatment at a clinic inside Hopital Sainte Croix in Léogâne, where the base of operations for Notre Dame’s Haiti Program is located. Listening to their stories, one senses a reluctant acceptance of the physical pain endured because of LF. It’s far more difficult to understand being ostracized by friends, family and society at large. Even in a place where most have so little, victims of LF seemingly occupy the space at the bottom of the social ladder.
So says Claudette, a clinic patient who’s been battling the disease for 32 years. On multiple occasions, Claudette visited a local hospital, begging for her leg to be amputated. Better to live with a single leg than to deal with the incredible physical and emotional toll of LF, she reasoned. Now, through a combination of compression bandaging and massage treatments at the Sainte Croix clinic, she’s learning to manage life with the disease.
“Even though this is a humiliating disease, you, Notre Dame, give a lot of value,” Claudette says. Others recount similar stories: One woman speaks of losing hope she would ever walk again. Another speaks of the lack of companionship from men in the village. Now, slowly, the tide of their affliction is turning.
The success can be traced in part to 2001, when a group of Notre Dame alumni who had gone on to become medical doctors began making trips to Haiti to provide care for LF patients, offering treatment of the sort described by Claudette, and performing surgeries on many men affected by the disease. For these doctors, like Marty Dineen ’74, it’s a chance to put into practice both the social teaching and the technical knowledge acquired through his education at Notre Dame.
“I just enjoy it,” Dineen says. “I come home feeling like a better man, a better person, a better doctor. I’m not so frustrated with all the problems we have in the United States. In the U.S., we do so little with so much, and yet these countries are asked to do so much with so little. To be able to restore a man’s dignity and ability to work, is something I’m pretty proud of.”
“It just feels right,” adds Dr. Ralph Pennino ’75, who’s been traveling to Haiti six times a year since 2010. “You don’t have to worry about copays, prior authorizations. It’s the purest form of medicine. You just take care of people.”
The doctors speak of another defining characteristic of their time in Haiti — noticeable, sustainable progress. Dineen notes that in early trips to the country, the doctors were necessarily a largely self-reliant group. Now, thanks to improvements in infrastructure and education, the doctors need only to focus on conducting surgeries and providing care — and training for young Haitian surgeons.
Pennino summarizes the trend by relaying the story of a Haitian named Sammy, whom the group met in the aftermath of the earthquake in 2010. Sammy was a street dancer, and as far as anyone knew, homeless. In the medical operations conducted after the quake, Sammy was brought into a M.A.S.H. tent and shown how to clean instruments. For the next six months, every group that came in to assist in the quake aftermath taught Sammy a bit about their medical field — surgery, orthopedics, etc. He soaked up the knowledge like a sponge, and then began to teach himself English. He became an instrument tech, and when a rebuilt hospital surgical unit opened two years ago, Sammy had a job.
Fr. Streit contextualizes stories like Sammy’s among the broader scope of the program’s work over the last 15 years. “In some ways, we’ve already won the battle, because we’ve built capacity here,” Fr. Streit says. “We’ve had 14 Haitian postdocs who are now in positions of responsibility, where if we pulled out tomorrow, they could continue the work. The government office to deal with neglected diseases is something Notre Dame helped the president start. We funded it, they provided personnel and nurtured it. It’s theirs now.
“I would say challenges in the developing world are deeper and sometimes harder to overcome, because there’s so little of everything: electricity, infrastructure. So in that way, you start to celebrate the small victories as big ones. And those start to pile up. And because they were so hard to achieve, there’s more satisfaction,” Streit says.
Yet the doctors making regular visits to Haiti are the first to suggest that in an ideal world their services would not be needed. Theirs is a secondary responsibility, necessary only after the primary contraction of LF and noticeable symptoms arise. “Far more important is the primary part,” Pennino says. “You eradicate LF, and in the future you won’t need me.”
“Almost every person, every day, eats salt. So if you add fortificants to that, you use it as a way to bring healing.”James Reimer, former vice president of Cargill Salt
In order to provide lasting success against LF in Haiti, Notre Dame was instrumental in starting a new industry in the country: salt processing. For Americans who’ve lived with clean salt ubiquity their entire lives, the thought of not having it on the kitchen table or in abundance in their store-bought foods seems completely foreign. What’s more, the U.S. and other developed nations use iodized salt, with the iodine added usually as a way for governments or health organizations to pre-empt a number of metabolic and developmental problems associated with iodine deficiency disorder (IDD), a leading cause of cognitive impairment and intellectual disability. The U.S. began adding iodine to salt in the 1920s as a way to counter IDD and thyroid goiters.
Haitians have a much different relationship with salt. Here, the mineral is used almost exclusively in cooking, not as a way to season food after it’s prepared. Raw salt is produced by evaporating seawater in a local salt pond. It is then added directly to food in cooking, often with no small amount of impurities and with no added iodine.
In 2012, James Reimer, a former vice president of Cargill Salt, was tapped to expand the existing salt processing facility which had been operating with relatively small volumes since 2006, and build a new salt-producing infrastructure in Haiti. The result was a major expansion of operating capacity and installation of the first-ever brine-washing system dedicated to the processing of clean salt in the country, stripped of the impurities and contaminants that locally harvested salt contains.
But equally important is not what the facility takes out of the mineral, it’s what it puts in. The salt produced at the factory in Port-au-Prince is fortified with potassium iodate (KIO3) and diethylcarbamazine (DEC), a parasite-killing agent that targets the juvenile worms that cause LF. While the addition of iodine is fairly common, the step of adding medication in the way Haiti’s salt factories are fighting LF is not.
“It’s a natural fit for a country that has this scenario that they’re faced with, where they’ve never had iodized salt,” says Earl Carter, an assistant dean in the College of Science, and the Haiti Program’s former managing director. “Increasingly, we’re able to use raw local salt and wash it to the point it where can be used for food grade applications.”
“We’re using salt as a way to deliver fortificants that improve health, and we’re putting those in something people consume every day,” says Reimer. “Almost every person, every day, eats salt. So if you add fortificants to that, you use it as a way to bring healing.”
“It provides an ongoing, year-round means of addressing these diseases (LF and IDD),” Carter adds. “It’s been successful in certain parts of the world, and we believe it’s the type of thing that would provide long-term benefits to the people of Haiti, basically in perpetuity.”
The salt plant in Port-au-Prince is operating in phase two of a three-phase plan. In 2016, the plan is to double production, with consideration being given to developing a second facility in the northern part of the country. This will allow processing closer to Haitian raw salt fields, and also closer to other regions of the country where LF is endemic. The double-fortified salt is marketed under the brand Bon Sel Dayiti+, meaning the “Good Salt of Haiti Plus,” and has the backing of Marhone’s office via public service campaigns to educate the population of the benefits of pure, iodized salt with DEC. Fr. Streit points out that a number of health issues can be addressed through a diet with proper amounts of iodine, most critical of which may be the lack of brain development associated with iodine deficiency.
“The potential is there to actually raise the IQ of this country,” says Streit. “That’s a way to change the future. We’re going to help this country gain the intellectual horsepower it needs to compete in the global marketplace.”
“We are forever altering the trajectory of a developing nation,” Carter adds. “What a model for the world.”
Mass drug administration through salt is the Haiti Program’s innovative supplement to the standard tablet-based treatment program also prescribed by the World Health Organization (WHO). Two drugs are used in that aspect of the program, DEC and albendazole, which helps rid the body of parasites that cause other ailments including a fatal anemia and cognitive impairments in children. Using the two in concert is a way to add value and bolster community support for the program.
A local survey among a group of over 1,200 schoolchildren showed the LF infection rate had dropped from 44 percent to less than 0.1 percent.
Adult female LF worms can live in the body up to eight years, so drug administration occurs annually nationwide to kill progeny worms until the females die naturally. However, it is the juvenile worms that mosquitoes transmit from person to person, so ridding the body of these parasites has a significant effect in halting the spread of the disease.
Under the program, Haitians are given between one and eight pills to take, depending on their age. Distribution sites are set up throughout the country, approximately one for every 1,000 people. Each dosage contains enough medicine to be effective for one year.
WHO models indicate that approximately 70 percent of a population should receive the parasite-killing medication in order to stop transmission of diseases like LF. Notre Dame and its partners achieved full coverage of the Haitian population in 2012, treating 8.6 million Haitians out of a total of 10 million. The program had showed success soon after its launch in 2000, but in the spring of 2015, a watershed moment demonstrated just how successful it had become: A local survey among a group of over 1,200 schoolchildren showed the LF infection rate had dropped from 44 percent to less than 0.1 percent. All in a country where the normal tools that would be used to administer such a program — electricity and roads, to name a couple — are unreliable at best, and many times non-existent.
“A lot of people wonder about putting good money after bad in Haiti, and other parts of the world that just seem to have problem after problem,” Streit says. “But we’ve got a 15-year track record of success, in distributing medicines and monitoring the results. Kids especially, when they’re freed of these parasites, will grow up faster, taller, be more attentive in school, and end up smarter, for life. Then they can solve the other big problems of Haiti.”
The program requires a series of cycles of drug administration at the national level; there is one cycle remaining in the congested and populous region around the capital city before further, widespread testing and research is performed to determine whether mass drug administration can cease. “We’re very heartened we can get there by 2020,” Carter says. “Those areas where we’re able to start doing testing, we’re increasingly doing so, and we expect to see more success stories coming.”
Once the pill-based drug administration ceases, the program will rely on the salt industry to sustain the success and keep the parasites that cause LF at bay. One bag of Bon Sel D’ayiti contains enough DEC to meet the needs of a family of five for one year. Moreover, Notre Dame is exploring other avenues through which the co-fortified salt can enter the Haitian diet. For example, when market research indicated approximately 25 percent of the salt Haitians consume is found in their bread, Notre Dame began developing relationships with local bakers who could use Bon Sel in their recipes.
Those kinds of relatively subtle decisions — using co-fortified salt where previously unpurified salt would be used — are a key battlefield in the fight to maintain imminent success over LF, as Mahrone is acutely aware. “The biggest challenge we’re facing right now is behavior changes,” she says. “For me, achieving iodized salt at the national level is the starting point.”
“We continue to gather data that is telling a tremendous story about the end game here.”Marie Donahue, Haiti Program managing director
That will be made possible by the expansion of the salt industry Reimer forecasts for next year. Meanwhile, other plans are being developed to ensure the results achieved through the work of all facets of the Haiti Program are sustained as well, mostly relying on the infrastructure Streit mentions: the government office of neglected diseases headed by Dr. Frantz Lemoine, the clinic at Hopital Sainte Croix, and other procedural and administrative improvements. “It’s been a bit of a puzzle,” Streit says. “But they fit together so well, and the product, of course, is a beautiful picture: better health and a better future.”
Streit acknowledges the good fortune involved in the program. Once the program showed early success, attention turned to refining what was working, not figuring out what would work in the first place. “As a scientist, sometimes I have to pinch myself because I get to work with people from Notre Dame, with our partners, and change people’s lives,” he says.
To be sure, a program of this scope depends on productive partnerships and dedicated support, but also on people of vision and passion. Streit and the alumni doctors who care for LF patients point to their former chemistry professor, the late Emil T. Hofman, as one such individual who saw the need and inspired others to contribute their time and talents. It was Hofman, after hearing of Streit’s work in Haiti, who recruited large groups of doctors, all former students, to visit the country with him, beginning in 2005, to figure out how they could help the Haitian people. Now a decade and hundreds of trips later, “Emil’s Army” has impacted the lives of thousands of Haitians. Hofman made his final trip to Haiti in 2012 to celebrate his 91st birthday. He passed away in the spring of 2015.
That sense of purpose — to use research and knowledge to bring about a positive humanitarian outcome — is ubiquitous among the people involved in the Haiti Program. It’s foundational to the broader University mission, and underscores the current work of preparing to replicate the success of the program worldwide. While LF in Haiti affects 2 million people, the worldwide impact is more than 60 times that number. So while the work in Haiti is noteworthy, Marie Donahue, the Haiti Program’s new managing director, points out the true impact of the Notre Dame program may be realized well after 2020, and well beyond Hispaniola. “We continue to gather data that is telling a tremendous story about the end game here,” Donahue says. “Not just about elimination of a disease, but about the methodologies, the complementary approaches that were tried. We’re looking forward to this being used as a template for other parts of the world as we look to 2020 and beyond.
“We’ll leave our legacy in Haiti, which will be a fairly discreet one, but will also generate a broader legacy for the world as to how you approach neglected tropical diseases, and win.”