Background

Leprosy, also known as Hansen’s disease, is a neglected tropical disease (NTD), caused by the bacteria Mycobacterium leprae that causes skin lesions, affects peripheral nerve function, and can lead to disabilities if left untreated [1]. It is an ancient disease that persists in the modern world due to poverty and weak health systems [2]. Over 200,000 new cases are reported annually in over 120 countries, but many more cases remain unaccounted for globally. To successfully eliminate leprosy, the chain of transmission has to be interrupted [3]. Recent recommendations by the World Health Organisation (WHO) include active case finding (ACF) and preventative chemotherapy as measures to interrupt the chain of transmission [1]. This forms part of a larger strategy for leprosy elimination, the WHO “Towards zero leprosy” strategy (2021–2030) [3], which strives towards zero infection and disease, zero disability and zero stigma and discrimination.

For many years, leprosy has not been considered a public health threat, on a global or national level. This lack of impetus has recently been addressed by the WHO’s “Towards zero leprosy” strategy, which has redefined leprosy elimination, as “interrupting transmission and achieving zero autochthonous cases”, meaning zero cases of leprosy in a geographical country or area [3,4]. Additionally, the WHO published technical guidance on the “Interruption of transmission and elimination of leprosy disease”, consisting of a Leprosy Elimination Framework [5]. This framework consists of different phases of leprosy elimination and elaborates on the definition of leprosy elimination. It is Phase 2 that consists of the interruption of transmission until elimination of disease, which is measured by “no new autochthonous cases for at least 3 consecutive years (and no child cases in 5 years)” [5]. The full Leprosy Elimination Framework is shown in Fig 1.

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Fig 1. Leprosy elimination framework adapted from WHO [5].

https://doi.org/10.1371/journal.pntd.0013345.g001

The WHO Americas region reports the second highest new annual leprosy cases, with 29,936 in 2019. Brazil accounts for the majority of the leprosy burden in the WHO Americas region, but other Latin American countries, including Colombia, Paraguay, Venezuela, Argentina, and Bolivia continue to report cases annually [6].

In Bolivia, leprosy was endemic for centuries and it is now classified as a low-endemic setting for leprosy [2,7,8]. In 2006, there were 165 new annual cases reported in Bolivia [2]. This has been slowly decreasing, with 38 new cases reported in 2022 [2]. Despite the low incidence rate, children below 14 years of age make up 3% of the new annual cases in Bolivia, showing that active transmission of leprosy remains [7]. New cases among children means that Bolivia remains in Phase 1 of the WHO’s Leprosy Elimination Framework [5,9]. To progress to Phase 2, there must be no new cases among children for at least 5 consecutive years, as shown in Fig 1.

Within Bolivia, the region of Santa Cruz has historically reported the highest number of new leprosy cases annually (out of 9 regions), and continues to do so today [2]. The region of Santa Cruz shares a border with Brazil, which serves as a key leprosy entry point, as does the neighbouring region of Beni [2]. Jorochito Dermatological Hospital is located 43km outside the city of Santa Cruz. Since opening in 1972, it has been responsible for the diagnosis, treatment, and reporting of all leprosy cases within Santa Cruz, and is also the national referral hospital for leprosy cases in Bolivia [2]. Most leprosy diagnoses are made passively at Jorochito Dermatological Hospital, but 6 new cases were identified with ACF during household visits from 2021-2023, in a community-based intervention by Deutsche Lepra- und Tuberkulosehilfe e.V (DAHW) and the Damien Foundation [7,10].

This study explores the barriers to leprosy elimination in Bolivia from the perspective of Bolivian leprosy patients and medical professionals and in doing so aims to contribute to the research priorities of the WHO’s “Towards zero leprosy” roadmap. The main research question is ‘What are the barriers to leprosy elimination in Bolivia?’. The study also addresses the sub question ‘What is the role of ACF for leprosy elimination in Bolivia?’. By exploring the perspective of leprosy patients and medical professionals, current challenges, and insights into the Bolivian context, the study aims to provide recommendations that can contribute to the elimination of leprosy in Bolivia. These recommendations are relevant for the national government, the regional government of Santa Cruz, as well as for non-governmental organisations (NGOs) working to reduce leprosy in Bolivia, including the Damien Foundation and the DAHW [11,12].

Ethics statement

The study has been approved by the Maastricht University Programme Ethical Review Committee, with the registration number FHML/GH_2024.01. Ethical clearance in Bolivia was also obtained and approved by the ethical review board of the Universidad Mayor Real y Pontificia de San Francisco Xavier of Chuquisaca. Informed consent was gained from all participants using the consent form attached as appendix 1.

Study design

A phenomenological approach was used to address the research questions. This qualitative approach allowed for the investigation of the barriers to leprosy elimination from the lived experiences of the participants [13]. Semi-structured in-depth interviews were conducted, in line with the phenomenological approach. Semi-structured interviews provide flexibility to validate participants’ answers, resulting in the collection of accurate and reliable data [14].

Sampling method

Purposive sampling was used for the recruitment of patients and medical professionals with first-hand experience of leprosy in Bolivia [15]. This was necessary as the aims of the study define the specific types of participants required to answer the main research questions [15,16]. Recruitment took place from mid-May to mid-June 2024. The inclusion and exclusion criteria for participation in the study is outlined in Table 1.

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Table 1. Inclusion and exclusion criteria for participation.

https://doi.org/10.1371/journal.pntd.0013345.t001

Study setting

The data collection was carried out in the region of Santa Cruz, the largest region in Bolivia by population and area, principally at Jorochito Dermatological Hospital. Some interviews were conducted at patients’ houses during ACF household visits, and one in the city of Santa Cruz with a medical professional.

Research population

There was a total of 17 participants, including 12 leprosy patients and five medical professionals. Demographic data of the participants are outlined in Tables 2 and 3. This was dependent on the availability and willingness of leprosy patients and medical professionals at Jorochito Dermatological Hospital as well as during ACF household visits. The medical professionals were all medical doctors with experience in diagnosing and treating leprosy patients, and 3 of them had additional experience in other leprosy control activities, including ACF and involvement in the National Leprosy Programme (NLP) in Bolivia. The interviewed leprosy patients had differing forms of leprosy (PB or MB), different disability grades as per the WHO grading system, and some had leprosy reactions [17].

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Table 2. Participant information: Leprosy patients.

https://doi.org/10.1371/journal.pntd.0013345.t002

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Table 3. Participant information: Medical professionals.

https://doi.org/10.1371/journal.pntd.0013345.t003

Data collection procedures

The data collection took place over one month, beginning in mid-May 2024. In-depth semi-structured interviews were conducted in Spanish. First, the potential participants were informed of the study and given the opportunity to ask any questions. Then, potential participants were asked if they wanted to participate in the study and invited to sign a consent form - appendix 1. Once the consent form was signed, the interview was conducted and recorded for analysis purposes. The interviews were conducted using a pre-prepared interview guide. Separate interview guides were prepared for the leprosy patients and medical professionals, consisting of 6 guiding questions, to allow the participants to explain their experience with leprosy attached as appendix 2 and 3 respectively. The interviews on average lasted 16:40 minutes, ranging from 4:52 minutes to 55:43 minutes. Medical professional 5 provided electronic, written answers to the questions instead of conducting an in-person interview due to personal preference.

Data analysis

The interview recordings were manually transcribed verbatim by PMC. The transcribed text was manually translated from Spanish to English by PMC. To begin with, the translation was read and re-read to increase familiarity with the data. A thematic analysis was conducted, using ATLAS.ti to assist with coding the interviews into themes. Both deductive and inductive approaches were conducted. In this way, the analysis was guided by pre-established themes grounded in the literature, but also gave rise to new, emerging themes relevant to leprosy elimination in Bolivia [18].

Health system factors

Factors related to the health system were identified as barriers to leprosy elimination, namely health workforce and health financing.

Health service factors

Factors related to health service were identified as barriers, including availability, affordability, appropriateness and treatment (availability, adverse reactions, adherence).

Individual-related factors

Factors related to the individual refer to the leprosy patients’ knowledge, perception, health literacy, and stigma.

Governmental neglect and NGO dependency

Neglect by the Bolivian government was reported by both patients and medical professionals. The lack of priority given to healthcare is reflected by the weak health system that cannot provide the necessary primary health care, let alone detect and treat leprosy in a timely manner. Not only does the government neglect health as a whole, but leprosy as a disease is specifically neglected. While the neglect of leprosy can be seen on a global scale and by other national authorities, it remains a significant barrier to the elimination of leprosy in Bolivia.

“Leprosy is a neglected disease, so the government does not budget anything for leprosy.” – Medical professional 4

As a result of the neglect of healthcare and of leprosy in Bolivia, external actors play a prominent role to supplement the actions of the government. For leprosy, NGOs are funding and organising the control strategies. This inaction at the governmental level is a significant barrier to leprosy elimination, as it results in a lack of national policies, action plans, structures and personnel, that are all required for leprosy elimination.

However, problems with the role of NGOs in leprosy control were also identified. Firstly, the lack of importance given to leprosy on a global scale results in a lack of funding. This lack of funding means that NGOs do not have the means to support leprosy control in Bolivia, and those that can provide support have a very limited budget, meaning the control strategies are also limited. Secondly, medical professionals reported biases and challenges that arise from the work of NGOs. These challenges with NGOs, despite them being the only current source of funding for leprosy control activities in Bolivia, show that their presence is a temporary solution, and the ultimate aim is that the government gives importance and funding to leprosy control.

An alternative perspective to leprosy control was also reported. Medical professional 3 described that leprosy control has to be achieved in a sustainable manner, through teaching others and implementing strategies that work for Bolivia.

“If we are going to help, let’s do it by making people take responsibility with what they have. Let them do well with what they have… Not by bringing me help from outside, but with what I have to teach me and so that I can do it.” – Medical professional 3

Weaknesses of National Leprosy Programme and current leprosy control strategies

It was reported that the NLP in Bolivia consists solely of the arrival of the medication from the WHO. Additionally, there is a “lack of a leprosy control task force” (Medical professional 5, written answer), further hindering the possibility of an effective NLP. It was reported that the national leprosy control strategies are just being carried out at Jorochito Dermatological Hospital with the support from Damien Foundation.

Challenges with the current leprosy control activities were also reported, including the lack of follow-up mechanism and the lack of facilities that can diagnose and treat leprosy. These reports demonstrate how the current leprosy strategies are insufficient to diagnose and treat all leprosy cases in Bolivia and in preventing new cases.

Societal stigma

Societal stigma was identified in addition to the stigma at the individual patient level. It was reported that stigma is found in several aspects of Bolivian society, hindering leprosy control efforts and posing a barrier to leprosy elimination. Stigma leads to rejection of patients by their families and employers, causing a simultaneous loss of a support system and an income. This rejection causes leprosy patients to be isolated and hinders treatment adherence.

“Well, the simple fact is that as long as you say leprosy, people tend to reject you.” – Patient 8

Stigma from the society also projects itself onto the health system. Medical professional 4 reported that “if I put dermatologist, leprosy specialist, in my office, nobody goes to my office”. This is problematic, as it shows that medical professionals also have to hide the fact they are associated with leprosy. This sense of hiding and secrecy only make diagnosing and treating leprosy in a timely manner more challenging. Stigma was also identified from other authoritative figures, including teachers and the church, demonstrating how ingrained stigma is in Bolivian society.

Stigma was also reported due to the mythical connotations surrounding leprosy. It results in misinformation about the spread of leprosy and rejection of leprosy patients, posing barriers to leprosy elimination.

“It has been a little bit that people still have that old myth that it is contagious just by touching it. So yes, we have noticed that rejection, but not from the family, but from the society.” – Patient 10

Stigma means that anything leprosy related will not be well attended. This could include training for medical professionals, free skin clinics for communities where known active patients reside, or a workshop to inform the general public. It was reported that a mobile skin clinic, intended to detect leprosy, had to be advertised as a clinic for any skin pathology due to the risk of poor attendance. Not only does this affect the efficiency of skin clinics to detect leprosy cases, but it also demonstrates the challenges of addressing leprosy on a large scale in Bolivia.

Lack of public knowledge

There were several reports about a lack of knowledge about leprosy, specifically regarding the prevalence in Bolivia and its impact on public health. This lack of knowledge results in a delayed diagnosis, as people are unaware that their lesions may be leprosy. The lack of knowledge about the role of leprosy in today’s society also contributes to the stigma, due to the established mythical connotations and consequent fear, exclusion, and rejection.

“For some people leprosy no longer exists, when we talk to them in the clinic and explain or comment on some occasions, they say ‘ah I thought it didn’t exist anymore’.” – Medical professional 1

Lack of knowledge remains due to the poor health communication regarding leprosy to the general public. In order for leprosy to be eliminated, the general public must be well informed about the signs and symptoms, how to access the necessary care, and the importance of treatment adherence to prevent the spread to others.

The role of active case finding for leprosy elimination

The sub-question of this study is to investigate the role of ACF for leprosy elimination in Bolivia. Firstly, medical professionals described ACF as “important” (Medical professional 4 & 5) and as the strategy that “deserves all, all, all, all, all the priority for diagnosis” (Medical professional 2). There are several reasons for its importance for leprosy elimination, including early case detection within close contacts of active patients and administration of SDR-PEP to contacts to prevent the development of leprosy.

“The active search for leprosy cases is very important in order to find cases early and treat them in a shorter period of time, thus preventing many transmissions and avoiding disabilities. Post-exposure prophylaxis is very important to prevent the development of the disease in their contacts.” – Medical professional 5, written answer

Another reason that ACF is so important is because of the clear exposure to leprosy faced by household contacts of leprosy patients. The household of an active leprosy patient is a likely place of transmission, and therefore the household contacts must be visited to check for signs of leprosy, and if no signs are present then SDR-PEP must be taken in case leprosy is in its initial, hidden stages.

“The active search is basic, elementary, because one will be able to enter the person’s home where they live, eat, share with their intimate ones. So, there is no other place. There is no other place where people with a higher risk are, such as contacts with an index case.” – Medical professional 2

The medical professionals also described how ACF should be performed, as there have been instances in the past where ACF has resulted in incorrect diagnosis of leprosy, which has personal consequences for those misdiagnosed. ACF must be conducted by trained medical professionals among the close contacts of an active leprosy case. This way the search is refined, and it is known that there has been close contact with a leprosy patient.

ACF also gives medical professionals the opportunity to educate and de-mystify the disease. As discussed above, this is not something that can be done on a large scale due to stigma, but in the household, it is easier, and patients are more receptive to learning.

“At home is where all this has to be done. It is the place where you can teach them. Where you can demystify. To tell them what the healer or the grandmother or the aunt has told them, that this is an illness related to the mythical, religious or telluric part, or that someone has cursed you.” – Medical professional 2

It was also reported ACF is especially relevant in Bolivia, due to the low number of leprosy cases. With the necessary funding and organisation, it is possible to conduct ACF effectively and visit every active leprosy case in Bolivia.

“Above all, we are in a country where the burden of leprosy is low. So, there is no reason for us to not go there. There is no reason.” – Medical professional 2

It is clear that ACF plays an indispensable role for leprosy control in Bolivia and is an essential part of the strategy for leprosy elimination. It must be prioritised as a key strategy to prevent the development of new cases and to diagnose new cases in a timely manner to prevent transmission to others.

The role of active case finding for leprosy elimination in Bolivia

ACF involves proactive outreach to detect and treat leprosy cases, rather than waiting for patients to seek care [33]. In Bolivia, ACF consists of household visits to screen contacts and administer SDR-PEP if there are no clinical signs of leprosy. The importance of ACF for leprosy elimination was highlighted by the interviewed medical professionals, as it ensures that those individuals most susceptible to leprosy, i.e., those living in close contact with a leprosy patient, are evaluated, protected by SDR-PEP, or diagnosed and treated if appropriate. These findings are strongly supported by the literature, as ACF has been shown to find many patients in the early stages of leprosy reducing progression, disability, and transmission [34,35].

Bolivia’s current ACF strategy can be described as household contact tracing. Other forms of contact tracing, not yet implemented in Bolivia, include tracing social contacts, such as neighbourhood and school contacts [36]. There are also other methods of ACF, including door-to-door detection, rapid village screening, and the distribution of screening questionnaires [36]. A recent study explored the different types of ACF used for leprosy in high endemic regions vs in low endemic regions, and how effective the methods were in early case detection [36]. In low endemic settings, rapid village screening was found to be the most effective method in identifying new cases, i.e., greatest % of case detection. However, door-to-door detection and screening questionnaires were used to screen and evaluate the greatest number of individuals, compared to household contact tracing and rapid village screening. The screening of a large number of individuals is essential for leprosy elimination, specifically in low endemic regions like Bolivia [36]. To successfully eliminate leprosy in Bolivia, ACF strategies could be expanded to include a more generalised search, in combination with the targeted household visits. In this way, more individuals could be screened, increasing the chance of finding leprosy cases, providing treatment, and preventing transmission to others. This requires funding, organisation, trained personnel, and the structures in place to conduct the search, diagnose, treat, and monitor the new and existing leprosy patients.

ACF is integral to leprosy elimination efforts, highlighted by the WHO in the “Towards zero leprosy” strategy [3]. By directly reaching individuals and evaluating them, ACF overcomes several of the barriers that leprosy patients face at the beginning of their disease, in terms of accessing appropriate health services and obtaining a correct diagnosis. It also overcomes individual-related barriers, such as health illiteracy, perception, and internalised stigma, as ACF removes the responsibility from the patient to search for and obtain a correct diagnosis. ACF also gives medical professionals an opportunity to communicate, educate, and inform leprosy patients and their contacts about the disease, the treatment, and the importance of its strict adherence, and therefore increase awareness and prevent further transmission of the disease.

Limitations

The study has methodological limitations that must be acknowledged. To begin with, the study was conducted in the region of Santa Cruz, and therefore is not generalisable to the whole of Bolivia. This setting was selected as it is where Jorochito Dermatological Hospital, the national referral hospital for leprosy, is located. Santa Cruz is also one of the two regions supported by the Damien Foundation, and therefore where several leprosy control activities are being carried out in Bolivia. Additionally, the small number of participants, and the fact that only one participant had grade 2 disability in their eyes, may have resulted in certain perspectives and experiences being missed. Furthermore, there are limitations associated with using interviews as the sole data collection method [37]. Interviews are unable to capture the full, true picture, due to the artificial setting, lack of familiarity between the interviewer and interviewee, and perhaps also due to stigma. In this study, a small number of participants were interviewed, which is therefore not representative of all the barriers to leprosy elimination in Bolivia. The interviewed medical professionals either worked at Jorochito Dermatological Hospital or were connections of the Damien Foundation, and therefore contain a degree of selection bias. There are also limitations regarding the data analysis process. During the deductive coding, several of the themes and sub-themes from the literature were overlapping, making it difficult to assign themes to codes. Additionally, as this is a subjective process, it may not be fully naturalistic, that is to fully capture the participants’ experiences in the findings [38]. Inductive coding was also conducted, which again is a subjective process and therefore may not be fully naturalistic.

Recommendations

Recommendations to reduce the leprosy burden and contribute to leprosy elimination in Bolivia have been formed based on the findings. The recommendations, summarised in Fig 2, require funding and a large collaborative effort, and are in alignment with the WHO “Towards zero leprosy” strategy [3].

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Fig 2. Summary of recommendations for leprosy elimination.

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