From never treated to behavior change champion: LF treatment in Haiti
By Avani Duggaraju, Claire Karlsson, Marie Maud Jean, WI-HER
Majorie Lamour lives in Plaine-du-Nord, Haiti not far from the local health center with her family. She was a dressmaker, but after the death of her husband she returned to her parent’s house and fell under hard times.
The commune of Plaine-du-Nord is a coastal area in the north of Haiti and is ranked among the top 15 municipalities in the country with the highest prevalence of lymphatic filariasis (LF), with an estimated prevalence rate of 45% at baseline in 2001. The commune has made significant strides toward reducing the prevalence of LF since, with 5.6% prevalence in 2020, but remains one of 17 communes in Haiti still requiring annual treatments for the disease.
LF is a neglected tropical disease (NTD) transmitted by mosquitoes. Over time, the disease causes hidden damage to the lymphatic system which can lead to permanent disability. Since 2001, Haiti has made great progress toward eliminating LF. USAID’s Act to End NTDs | East (Act | East) program supports the Government of Haiti in these efforts through the Ministry of Public Health and Population.
Each year, the Government of Haiti distributes preventive medicine for LF to all communities in need of treatment. Majorie lives in Morne Rouge, an urban section of Plaine-du-Nord which has struggled to convince enough people to take the preventive medicine for LF. Although Plaine-du-Nord has already benefited from more than a dozen rounds of preventive medicine, the Morne Rouge area continues to face challenges with LF prevalence because too few people accept the medicine when it is offered to them.
Community Connection with Health Facility Inspires Locally-Led Behavior Change
Majorie is one of the people who has never been treated for LF, and in fact, she strongly resisted taking the medicine every time it was distributed in her neighborhood. She had not heard information about the disease before, and so did not trust the community drug distributors when they were distributing the medicine in her area. In collaboration with Haiti’s Ministry of Public Health and Population, Act | East partner, WI-HER supported interviews with local community members and learned that this is a common reaction among urban residents, who are generally wary of fraud, and of being taken advantage of compared to rural residents.
Due to her history of resistance to LF medicine, Majorie’s local health facility invited her to come in and participate in a focus group discussion. She and about 45 other community members shared with the local nurse why they had not taken the LF treatment before. Many women in the discussion shared concerns that the medicine could cause drowsiness, hindering them from accomplishing their daily responsibilities, and that their male partners feared the medicine would cause them to have prolonged menstruation. Men in Plaine-du-Nord shared that they were afraid the medicine would have side effects for them as well. Both men and women reported not taking the preventive medicine in previous campaigns because they did not know why the medicine was being distributed, and expressed the importance of medical doctors’ guidance in their health decision-making.
During the discussion, the health workers shared with the group how debilitating LF can be, especially when left untreated over many years. They also addressed the misinformation around LF, and explained that the local health facility leads medicine distribution in the community and so it is something they can trust.
Majorie was deeply impacted by the discussion on LF. The information she received about LF and its treatment transformed her from being resistant to taking the medicine to wanting to be part of the solution. Majorie understood that LF is a severe problem and approached the health facility staff after the session to volunteer to be part of the campaign to eliminate LF.
“As someone who strongly refused the drug before, I can understand people's reservations and fear, thus I am able to talk to them and encourage them to get the treatment.” she explained.
The health facility invited her to become a member of a 7-person behavior change team (BCT) composed of community leaders like local teachers and business heads. Majorie was the only member of the team who did not already hold a prominent position of influence in the community. This shift from resisting the LF medicine to becoming part of the BCT and promoting community change, is remarkarble as Marjorie is the only community member to have undergone this transition.
As part of this team, Majorie received further training on LF, and the importance of preventive medicine. Majorie and the rest of the team discussed the common misconceptions, fears and information gaps their community has, and created an action plan for how to address them.
“I wish the health center would have invited me earlier to have more information on filariasis. In the process I learned many people do not take the drug because of lack of information on why it is important.”
Majorie and her fellow BCTs developed and tested solutions to overcome these barriers to medicine acceptance: for example, they conducted door to door visits, phone calls, and one-on-one education sessions with community members who had never been treated before, using their knowledge of the community to answer people’s questions and quell people’s concerns. The BCTs continued to answer community questions in the weeks leading into the medicine distribution through Whatsapp groups, an approach well-suited to urban residents more wary of house visits and interactions with strangers.
Health Education Helps Reach Communities in Plaine-du-Nord
The BCTs also provided education sessions using an album of images developed by the Government of Haiti and Act | East program to share about the transmission, impacts, and prevention of LF in a clear and professional way. The BCTs reported that the visual educational tool convinced community members to take the medicine quicker than in sessions without it.
When the medicine distribution campaign in Plaine-du-Nord began in April 2023, Majorie and the other BCTs took the medicine in the presence of the community to build their confidence to take it as well. For Majorie, this was her first time taking the medicine.
Majorie shared, “I took the drugs in front of them as a model. In the training we were provided on leadership, we learned that we need to set an example for others before asking them to do something.”
The BCT tracked their implementation progress with a sample of people in Morne Rouge who had never been treated before, and found that their strategies in the area had led to 87% of this cohort (46 people) taking the medicine for the first time. The Haiti Ministry of Public Health and Population, with support from Act | East, also conducted microplanning with local authorities, and engaged youth as enrollers, equipped with tablets for electronic data capture during the 2023 campaign. Through these combined efforts, it is estimated that hundreds of people that never took the treatment before took the medicine during the campaign. In all, 31,494 Plaine-du-Nord residents (79.4%) took the preventive medicine for LF in 2023, which is above the coverage target recommended by the World Health Organization.
In the year to come, the solutions the behavior change team developed and implemented will be applied more broadly to increase the number of people prepared to take the preventive medicine during the 2024 LF campaign. This will include continued use of WhatsApp groups to share LF information, closer engagement with medical doctors to share trusted information, and the adaptation of the LF image box for children as an interactive education tool in schools in 2024 and beyond.
For Majorie, the campaign’s progress is personal.
“I am proud to have contributed to the success of the Plaine-du-Nord behavior change team with 87% of cohort members taking the drug but also I personally helped 24 other persons take the drugs”.
Majorie continues to build on her training and new position on the BCT to make a difference in her community. She is supporting community participation and organization in her neighborhood, so it will no longer be a center for resistance to health services.