At the community level.

In-Depth Interviews (IDIs) and Focus Group Discussions (FGDs) were conducted with community and religious leaders, victims of HVOD, and residents. Community and religious leaders provided valuable insights into local beliefs, cultural practices, and the social context surrounding health issues. Victims of HVOD shared their personal experiences, challenges, and perspectives on the disease. The IDIs allowed for an in-depth exploration of individual experiences, whereas the FGDs facilitated group discussions to gather collective opinions and perspectives.

At the facility level.

Key Informant Interviews (KIIs) were conducted with health professionals from health facilities and representatives from district health offices. Health professionals including, doctors, nurses, and other healthcare providers treating patients, offered expert insights into clinical practices, patient care, and health outcomes.

Knowledge and understanding.

The community’s understanding of HVOD is multifaceted, reflecting both a deep recognition of its severity and confusion about its nature. Participants widely acknowledged HVOD as a chronic and life-threatening condition with symptoms that progress from mild to severe. This understanding is summarized in the following quote:

“There is no cure for it, and although it’s not transmittable between households, it is fatal. Once someone is infected, it eventually leads to death after prolonged suffering” (42 years, female, IDI).

However, there is confusion regarding its transmissibility. Some participants questioned its non-transmissible status due to its prevalence in entire households:

“Though it is considered non-transmissible, I doubt this, as it often affects entire households and even destroys many. However, seeing many unaffected households makes me confused about its transmission” (45 years, male, IDI).

Moreover, the community highlighted significant gaps in healthcare providers’ ability to diagnose and manage HVOD effectively. Misidentification of the disease by healthcare providers was a recurring issue:

“The disease remains undiagnosed for a long time, even when medical treatment is sought. Misidentification in its early stages, often mistaken for malaria or ‘Guaka,’ leads to delayed treatment” (50 years, female, IDI).

Healthcare professionals corroborated this knowledge gap, with one stating:

“When I was assigned to this district, I had no prior information about HVOD, and even senior colleagues did not inform me of its presence. I first became aware of it through the community” (27 years, male, KII).

Furthermore, providers acknowledged the lack of proper training and protocols for HVOD diagnosis and treatment:

“Currently, no training is provided for HVOD, and further training is required in HVOD diagnosis, case management, and treatment” (29 years, male, KII).

Unified support through inclusive leadership.

Despite the community’s knowledge about HVOD, there is a significant lack of leadership support and coordinated efforts from healthcare providers, political leaders, and other stakeholders. Participants expressed frustration over the absence of structured interventions for awareness creation, prevention strategies, and disease-specific treatment:

“Efforts to remove ‘Kewie Genene’ or Ageratum conzoides are interrupted mainly because the community and local leaders do not believe it is the cause. Currently, any government support, including free medication has stopped” (35 years, female, IDI).

The community’s familiarity with HVOD symptoms contrasts with their disagreement about its cause. Many linked it to divine origins due to the lack of scientific understanding:

“I have known this disease for decades—it weakens people slowly, leaving them without a cure. At first, even doctors mistook it for malaria, but later they called it ‘Himam Tselam Kebdi.’ Many believe it is from God, as its cause remains unknown” (70 years, male, IDI).

Healthcare providers echoed concerns about systemic failures in addressing HVOD:

“It is known about the current scenario because of the country’s failure... no one focuses on this movement for HVOD situations” (55 years, male, KII).

Efforts to mechanically remove Ageratum conyzoides, previously suspected as a cause of HVOD, have largely been abandoned due to skepticism about its effectiveness:

“The government once blamed the ‘Hagay Fetewe’ plant and forced us to clear it, but the disease persisted. If they were sure, they should have continued enforcing it until we saw results. Now, the issue is ignored, and people are left to suffer without proper medication. The real cause remains a mystery” (70 years, male, IDI).

Participants also noted that resource constraints made large-scale removal impractical:

“Decades ago, there was a campaign to remove the plant. But now how could farmers alone clear it after spending the entire summer struggling with other weeds?” (60 years, female, IDI).

Community perspectives.

The Ageratum plant is ubiquitous in the community’s agricultural lands, homesteads, and un-ploughed areas. Despite its widespread presence, community members generally do not believe that the plant causes hepatic veno-occlusive disease (HVOD). They have used the plant for generations without issues, and animals that consume it do not get sick. As one participant noted,

“Hagay Fetewe (Ageratum weed) had been part of our life for generations. Our mothers used it to mix with butter for hair treatment, believing it preserved the butter from melting. We also used it to sharpen traditional drinking utensils (Shkna)” (50 years, female, IDI).

Another participant emphasized, “I do not believe that Ageratum weed is the cause. It has been with us for a long time and is spreading rapidly. Animals also eat it, yet they do not suffer from the disease, even though scientific studies claim otherwise” (35 years, male, IDI).

This skepticism is also shared by healthcare professionals, who find it challenging to convince communities of the scientific explanation. A KII participant from a healthcare facility stated, “There is a significant difficulty since communities refuse to accept the scientific explanation of HVOD while simultaneously resisting the recommended remedies” (42 years, male, KII).

Some community members attribute the disease to divine punishment or evil spirits. For example, “The prophecy is stated like: first affect ‘Tsaeda Emba,’ spread across different communities at irregular intervals, and then fade away as it traveled east” (60 years, man, IDI). Another participant mentioned, “Initially, it was believed to be caused by the evil deeds of ‘Deftera’ (spiritual healers), but even after we left the area, the disease still persisted” (55 years, male, FGD).

In contrast, some participants expressed moderate beliefs that the ageratum plant could be a potential cause of the disease. One key informant stated: “The cause of HVOD could be the ageratum plant; however, the community is currently highly traumatized and fatigued from previous conflicts. Additionally, the plant has extensively spread over large areas, making it very difficult for the community to eradicate. Effective control may require technological interventions beyond community efforts” (34 years, male, KII).

Social barriers.

Social stigma is a significant barrier to healthcare access for HVOD patients. Many fears being labeled as infected, which discourages them for early medical examinations. As one participant noted, “People avoid early medical examinations, even when they recognize the symptoms, because they fear being labeled as infected. However, those who seek treatment early recover more effectively and survived” (30 years, male, FGD).

This stigma also affects social interactions, as victims are excluded from community activities and struggle to work due to their condition. For instance, “…it prevents people from engaging in hard labor. Victims feel weak and cannot work for their survival” (30 years, male, FGD).

Systemic challenges.

The healthcare system faces several challenges in addressing HVOD. There is a lack of training for healthcare professionals on diagnosing and managing the disease, and no guidelines exist for treatment and prevention. A KII participant noted, “Currently, there is a knowledge gap in diagnosing and managing HVOD cases, and the majority of the workforce is new” (42 years, male, KII). Another participant stated, “The main challenge is the lack of guidelines for HVOD management. Without proper guidelines, it is difficult to suspect HVOD cases” (34 years, male, KII).

Some healthcare providers express skepticism regarding the effectiveness of available medical treatments for HVOD. As one key informant noted, “We believe that medical interventions primarily serve to prevent complications and may only modestly prolong life, especially when patients present at advanced stages of the disease.” (30 years, Male, KII). This perspective reflects broader concerns about the limitations of current therapeutic options for HVOD, compounded by delayed healthcare seeking behaviors that often result in diminished treatment efficacy.

The two-year war in Tigray has significantly damaged health facilities, and the government’s attention toward the treatment and prevention of hepatic veno-occlusive disease (HVOD) remains minimal. As one participant stated, “There is no implementation or preventive strategy in place to deal with HVOD due to a lack of capability or favorable conditions” (35 years, male, KII).

Furthermore, another participant noted, “Government programs do not prioritize HVOD issues like they do for diseases such as HIV, TB, and malaria” (42 years, male, KII).

Economic constraints.

Economic hardship is a major challenge for HVOD patients. Previously, the government provided free medication, but now patients must purchase it themselves, which is often unaffordable. This financial burden leads to delayed treatment and increased mortality. A participant highlighted:

“A major challenge for victims is financial hardship. In the past, the government provided free medication, but now people must buy it themselves, which is a huge burden. Many die when they can no longer afford treatment” (35 years, female IDI).

The community’s reliance on traditional remedies like holy water further complicates the situation. A participant highlighted, “A major challenge for victims is financial hardship. In the past, the government provided free medication, but now people must buy it themselves, which is a huge burden. Many die when they can no longer afford treatment. Victims also first turn to religious remedies such as holy water or locally called Maychelot and ‘Tsebel” (35 years, female IDI).

Some participants expressed the belief that no truly effective medicine exists for the disease. One participant stated, “This condition is perceived as a consequence of our sins, and victims often seek remedies through holy water and traditional medicines rather than visiting health facilities.” (55 years, male, FGD).

The cost of accessing healthcare, combined with the need to sell assets to cover expenses, exacerbates the economic strain on affected families. As one participant noted:

“……now, four members of my family, including me, are completely dependent on medication. The difficulty in accessing it has worsened, forcing me to use my assets, including cattle, to cover the costs. However, it has become increasingly challenging as the medicine is now accessed privately, adding further worry to our misery” (60 years, male, IDI).

Intervention acceptance.

Interventions aimed at controlling HVOD face significant resistance due to community skepticism about the cause of the disease. There is a lack of proven referral linkages and no incorporation of HVOD into existing health programs. A KII participant emphasized:

“It is necessary for women development army and village health leader to define community cases and structure them so they could be referred easily, however, there is no such practice in the ground” (29 years, male, KII).

Effective interventions require strong stakeholder engagement, clear implementation strategies, and addressing potential barriers within the target population. However, without political will and community engagement, these efforts are likely to face significant challenges. As participants noted, “Currently, the tabia leaders do not give attention to HVOD. Formerly, they had awareness, but with the current situation, these activities are not performed at all” (31 years, male, KII).

Additionally, the community’s past experiences with interventions have been unsuccessful, further complicating acceptance. For example, “At first, when the disease was identified, we said that it was caused by contaminated drinking water by the plant. As a result, we were instructed to bury our water sources but failed to bring solution” (50 years, female, IDI).

Another participant mentioned, “We followed the authorities’ instructions and covered contaminated water sources. However, the disease still exists in other areas” (50 years, male, FGD).

“The government once blamed the ‘Hagay Fetewe’ plant and forced us to clear it, but the disease persisted. If they were sure, they should have continued enforcing it until we saw results. Now, the issue is ignored, and people are left to suffer without proper medication. The real cause remains a mystery” (70 years, male, IDI).

Before the conflict, the disease received significant attention from both the health and agriculture sectors. The government raised awareness among communities on how to clear the weed Ageratum, which contributed to controlling the disease, and medical support was provided at health facilities. As one participant stated, “Before the conflict, relatively the government had attention to the disease by creating awareness among the communities how to clear the plant Ageratum, and there was medical support for the victims at the health facilities.” However, now the disease is ignored by the government” (45 years, male, FGD).

Healthcare provider training.

Participants highlighted the need for targeted training programs to improve healthcare providers’ capacity to manage Hepatic Vein Occlusive Disease (HVOD). Standardized guidelines should be developed and integrated into training sessions to enhance skills in diagnosing, treating, and preventing HVOD. As one participant stated:

“Continuous professional development for healthcare workers is crucial for addressing gaps in knowledge and ensuring early detection and effective management of cases” (55 years, female, KII).

One key informant interviewee also stated, “The availability of laboratory services, drugs, and supplies for HVOD cases is very limited; thus, equipping health facilities with the necessary equipment, drugs, and trained personnel is crucial to improving their readiness.” (42 years, female, KII).

Community involvement.

Community engagement was identified as a critical component in combating HVOD. Participants recommended raising awareness through health campaigns and mobilizing local leaders, such as health extension workers, to encourage health-seeking behaviors. Sustained efforts in community sensitization were emphasized as essential for prevention and early intervention. As noted,

“Better awareness levels can be achieved through health awareness campaigns in the community” (55 years, female, KII).

Participants claim that additional resources, in addition to community mobilization, are needed because the coverage of ageratum is vast. As one participant stated:

“Decades ago, there was a campaign to remove the plant, but now how could farmers alone clear, after spending the entire summer struggling with other weeds?” (60 years, female, IDI)

Inclusion in national health programs.

Participants called for the inclusion of HVOD in national health programs alongside diseases such as HIV, TB, and malaria. Strengthening active surveillance systems such as case investigations and line-listing was seen as vital for improving disease monitoring and response.

“Inclusion of HVOD in national health programs such as those addressing HIV, TB, and malaria; strengthening active surveillance, including case investigations and line-listing; and ensuring that WHO and other non-governmental organizations (NGOs) concerned with community health focus on HVOD are critical priorities.” (42 years, male, KII).

“Multi-sectoral collaboration was strongly recommended to establish robust surveillance mechanisms and secure dedicated resources for HVOD management, including the provision of medications and preventive materials. Sustained support for relocated residents affected by HVOD was also identified as a critical priority. One participant emphasized the importance of inclusive efforts, stating,

“All sectors, including agriculture, education, water, energy, and non-governmental organizations (NGOs) concerned with community health, should actively participate in HVOD prevention and eradication” (42 years, male, KII).