Leprosy work in Angola

The first leprosarium of the leprosy care network of the Swiss Phil African mission was opened in 1946 in Caluquembe, Huíla province by Bréchet, a pioneer of leprosy work in Angola. In 1965, he reported the positive results of a Dapsone (DDS) chemoprophylaxis trial in more than 700 child contacts of leprosy, recommending its use as an effective, simple, and easy preventive approach¹².

The colonial Leprosy Control Program, created in 1958, operated through mobile teams and two leprosaria, one in Cazombo, Moxico province, and the other in Funda, Luanda province. By 1975, year of the country’s independence, more than 15,000 leprosy patients were reported as being treated with DDS monotherapy. Multidrug Therapy (MDT) was introduced in 1994, becoming available countrywide by 1998, freely supplied by the WHO. In 2002, all existing leprosaria were integrated by the MOH either as health posts or health centers into the national primary health care (PHC) system¹³.

In 1994, the NLCP initiated a collaboration with international NGOs, under the banner of the the Evangelical Solidarity Association (SOLE), working in partnership with the National Association for the Reintegration of People Affected by Leprosy (ARPAL)¹³.

Epidemiological trend

Administratively recorded and reported cases are presented in figure 1 (2000-2022) and table 1 (2015–2022), including data on incidence, prevalence, age, gender, MB cases, disability, and relapses¹⁴,¹⁵.

Figure 1 Leprosy in Angola: trend of newly detected cases, 2000-2022, % of children in new cases, % of Grade 2 deformities (G2D) in new cases and % of multibacilar (MB) in new cases (Source: WHO/DNSP). 

The total number of newly detected cases reached in 2002 a peak of 4,272, followed by a decline in subsequent years. In 2005, Angola registered 1,877 new cases and formally reached the status of “leprosy elimination as a public health problem”¹⁴-¹⁶, as defined by the WHO¹⁷ (i.e. national prevalence < 1 case per 10,000 population). In 2009, the total number of new cases went further down to 937, but the elevated rates of new cases in children under 15 years of age (11.7%), of new cases with grade 2 deformities (G2D; 12.7%), and of new MB cases (85.9%) were indicative of continuous disease transmission in affected communities¹⁸. From 2012¹⁹, the number of annually newly detected cases began to increase again from its 431 lowest point to 605 in 2017 and 860 in 2022⁴. In 2022, the 860 newly reported cases still included high proportions of MB cases (96,6%), pediatric cases (12,3%), cases with G2D (9,9%), high number of treatment dropouts, and relapses (107 cases). About 75% of all new cases were males and 25% females, yielding a male-to-female ratio of 3:1 (Table 1)³. MDT was administered to 85% of all newly detected cases⁶. The total registered prevalence was 1731; all provinces were endemic (Fig. 2), with prevalence rates below the WHO public health elimination threshold. Luanda province, enjoying better availability of health services, registered the highest number of new cases (128). More than 80% of all cases were notified in nine central provinces⁶,⁹, essentially the same as in 2011¹³.

Figure 2 Leprosy in Angola: provincial distribution of new cases in 2022 (source DNSP). 

With WHO support, integrated case searching was carried out in 2023 in 10 municipalities across the provinces of Bengo, Kwanza-Norte, and Kwanza-Sul. This led to the detection of 57 new leprosy cases, the training of 156 technicians, and heightened community awareness about the disease²⁰.

The National Leprosy Control Program

The NLCP is a constituent of the NTDs program, itself subordinated to the DNSP. The NLCP staff at central level has only two full-time public health specialists, assisted by a dermatologist and NTDs technical officers at provincial and municipal levels. The 2021–2025 national Leprosy and NTD strategic plans were developed along with the 2021-2030 WHO Global Leprosy Strategy¹ and Global Roadmap for ending NTDs⁴.

In 2022, 102 health facilities, corresponding to 3.7% of the 2793 registered public health facilities, and located in 62% of the 164 municipalities, were providing leprosy diagnosis and treatment services; the rapidly growing capital city of Luanda, with an estimated population of 9 million has only two units dedicated to the care of leprosy cases, where suspected cases are referred for diagnosis and/or treatment. Data from the Américo Boavida Hospital Dermatology Service show that over recent years, the service diagnosed and subsequently referred for follow-up to the NLCP leprosy units more than 50% of the new cases detected in Luanda.

Recent leprosy program reviews⁶,⁷,²⁰ and planning documents⁸,⁹ have identified planning and operational deficiencies, including (i) low community and health-workers awareness of the disease, (ii) deficient local diagnostic capacity and delays in referring suspected cases, (iii) weak active case finding, (iv) sporadic contact tracing and preventive chemotherapy, (v) dwindling of skilled personnel, (vi) scarcity of referral services with capacity to manage disease complications and reactions, as well as weak psychosocial care and rehabilitation services, (vii) incomplete and fragmented data, despite mandatory notification of the disease, (viii) paper-based data entries and reports leading to data omissions, mistakes, and transmission problems, and (ix) deficient funding and insufficient collaboration with other programs such as other NTDs and TB control programs. Skin-related NTDs have indeed been receiving much less funding and attention than NTDs managed primarily through mass drug administration.

On a positive note, dermatologists are increasingly working in partnership with the NLCP, expanding their action from clinical work to advocacy, training activities, and field investigations. Furthermore, the emergence of national solidarity and social reintegration networks, such as SOLE and ARPAL, though still incipient, is giving to PAL&FM greater confidence and a stronger voice in society.

The burden of stigma, discrimination, and socioeconomic disadvantage

The fourth strategic pillar of the WHO Global Leprosy Strategy 2021–2030¹ is the combat of stigma and the respect of human rights. In 2022, Angola set a good example of cooperation with the UN/Human Rights Council by inviting its Special Rapporteur on discrimination against PAL&FM, to explore locally the challenges and opportunities to reduce stigma and discrimination against PAL&FM²¹.

The general principle of nondiscrimination is established in Angola’s Constitution and legal framework, and the country is a State Party to core International Human Rights Treaties, including the Convention on the Rights of Persons with Disabilities, the Convention on the Elimination of All Forms of Discrimination against Women, and the Convention on the Rights of the Child. A key milestone was the establishment in 2020, by Presidential Decree, of a national human rights strategy and action plan incorporating equality and nondiscrimination as a pillar to warrant the respect of vulnerable groups²². Solidarity, equity, ethics, cultural identity, and gender equality are core values of the National Health Policy. Universality, quality, humanization, accountability, and intersectoral approaches are adopted basic principles for health interventions²³.

While a sound legal and institutional framework appears to be in place in Angola, without laws nor regulation in force formally discriminating PAL&FMs²⁴, field observations have revealed a lack of effective application of the formal legislation, leading to a negative impact on the enjoyment of fundamental human rights by PAL&FM. A search of official data has shown the absence of qualitative and quantitative information on incidents of discrimination, human rights violations, and on the living conditions of PAL&FM. However, the UN/SR visit report¹¹ made reference to documented accounts of discrimination incidents faced by PAL&FM such as (i) school children being victims of neglect or even exclusion, (ii) PAL&FM suffering familial lack of attention or rejection, and (iii) PAL&FM suffering from denial or loss of employment and even of refusal to be attended or treated by health workers; loss of follow-up often related to stigma. It has also been noted that some impoverished PAL&FM are living isolated, nearby, or inside old leprosy sanatoria, considered as safe heaven. Such reports are a matter of concern and warrant further research, as already done in some other countries with endemic leprosy²⁵.

Challenges and perspectives towards zero-leprosy

The free availability of MDT from 1998 and the end of the prolonged internal conflict in 2002 played a catalytic role in the elimination of leprosy as a public health problem, allowing better access to health care in remote areas, with enhanced case detection and treatment. Henceforth, there was a decline of leprosy incidence and prevalence, which, however, subsided by 2012 (Fig. 1). Various factors may have impacted on the transition to a steady, slowly upward, plateau such as (i) a misinterpretation that leprosy had been eradicated in 2005, (ii) a progressive dwindling of health staff with leprosy expertise, and (iii) a reduction of national and international funding which penalized both the NLCP and the partner NGOs¹³.

Many existing tools, such as contact tracing, preventive chemoprophylaxis, and active case finding, have not been systematically applied, resulting in operational gaps earlier mentioned. Furthermore, the limited capacity of the healthcare system to timely diagnose leprosy has also been acting as a limiting factor. The single use of the simplified WHO classification, the frequent lack of detailed neurological examination to detect early sensory alterations, especially in cases not yet showing typical skin lesions, and the scarce facilities for bacilloscopy and/histopathology²⁶ contribute to mistakes and/or delayed disease diagnosis.

Given the occurrence of incorrect and/or late diagnosis and underreporting, particularly in rural provinces, epidemiological data must be interpreted with caution, as real numbers likely exceed those reported. All information available in the health structures of the public health system is not collected, and the weak interconnection with the private health units compounds the problem. Furthermore, the assumption that the leprosy program has been active in the entire country does not match the reality and may lead to biased detection and prevalence rates. Hence, it becomes urgent to improve the quality of the database, including mainstreaming leprosy and other skin NTDs in a digital case-based database, such as DHIS2.

The persisting high proportion of new cases among children (12.3% in 2022; Fig. 1) is of particular concern, as this is a well-recognized indicator of recent transmission¹,². Furthermore, the elevated number (85 in 2022) and proportion (9,9%) of new cases with irreversible physical impairments (G2D) indicate that active detection, contact tracing, and timely treatment must be improved¹,². Figure 3 shows a young girl with her infected untreated father and grandmother, presenting leprosy skin lesions and visible hand deformities (G2D), as a result of long-term family contact. This is a poor, illiterate family, living in a distant village where PHC health workers did not recognize the disease. At the age of 13, due to her hand deformity, the girl was taken by her father to an orthopaedist who referred her to the dermatologist who made clinically the diagnosis of leprosy. Bacilloscopy was negative.

Figure 3 A: leprosy in a family affecting a 13-year-old girl, her father, and her grandmother. B and C: leprosy skin lesions and G2D hand deformities. 

As observed in other affected countries²⁷-²⁹, the lower number of newly reported cases in 2020 (see Table 1) resulted from the impact of the COVID-19 pandemic, which affected the overall performance of health services, including the NLCP. It has also been reported that throughout the COVID-19 pandemic, PAL&FM have disproportionately suffered of multiple discriminations and exclusions³⁰.

Meaningful engagement of some relevant partners is still limited. Key stakeholders such as the associations of persons affected by leprosy face difficulties to play their expected role. Community development workers (ADE- COs) could be mobilized, with appropriate training, to become more involved in the prevention and early detection of new cases. However, the focus on PHC should not lead to a lack of medical expertise for correctly diagnosing and managing such a complex and polymorphic disease. In that regard, dermatologists are a precious resource to detect cases with lesions mimicking other diseases, such as dermatophytosis (Fig. 4A), seborrheic dermatitis, pityriasis versicolor, hypochromic patches (Fig. 4B), nodules (Fig. 4C), and ulcers of other origins, as well for complex clinical diagnosis and treatments. It is worth noting that dermatologists are progressively filling the gap left by the dwindling leprologists; in 2022, Angola had 40 trained dermatologists operating in 6 provinces, all familiar with NLCP guidelines³¹. Medical students and family doctors are equally trained on leprosy diagnosis and management.

Figure 4 Leprosy lesions in children mimicking. A: dermatophytosis, B and C: hypochromic patches and nodules of other origins. 

Stigma and discrimination are more than just other medical issues

Though stigma and discrimination have been leprosy associated features for centuries, they have only been recently recognized by UN/State members not just as medical issues but also as deeply rooted right issues. This became visible in 2017 when the Human Rights Council appointed the first UN/Special Rapporteur on leprosy to investigate to which extent affected countries implement the UN principles and guidelines for the elimination of discrimination against PAL&FM³².

Several explanations are suggested by the UN/SR regarding the lack of official data on stigma and discrimination¹¹: (i) Such data are not systematically collected by any State institution, (ii) There have been no official records of such incidents in the courts or other types of complaints filed by PAL or their families to the Office of the Ombudsman or other relevant bodies, and (iii) The current grading system for assessing and measuring leprosy-related impairments does not record invisible psychosocial impairments and disabilities as it only focuses on measuring visible physical impairments. By design, the basic Angolan Law on Social Protection (Law No 7/04 of October 15, 2004) protects people in the formal work market but, as a matter of fact, the majority of the population is working in the informal economy and is thus being left out. Some recently established poverty relief programs could however lead to improved financial and social inclusion of vulnerable groups. A good example is the noncontributory cash transfer programs called Kwenda³³ implemented by the government’s social support fund, in partnerships with the World Bank, aiming to provide financial support and access to health and education to poor and vulnerable households. This type of project appears to be a promising avenue to improve the social and financial inclusion of PAL&FM.

Women and children, either directly affected or indirectly concerned as family members of PAL, require special attention¹. Women suffer the double burden of leprosy stigma and gender-based discrimination, and children should under no circumstances be denied access to education. Women also tend to assume most of the responsibility for caregiving tasks and for bearing the social and economic costs of the disease³⁰.

While most PAL&FMs already live in poverty or extreme poverty, leprosy frequently leads to a silent worsening of their living conditions, through denial of decent education and work opportunities, loss of job, disruption of family, community, and other social ties²²,³⁰. The worsening of the health conditions may also lead to additional costs, such as transportation costs to seek treatment, additional expenses for medication to treat leprosy reactions, ulcers, and other complications, as well as expenses associated with impairments and disabilities²⁶,³⁰.

In the context of other skin diseases associated with stigma, discrimination, and social exclusion, it is worth mentioning the approval by Presidential Decree (N° 193/23 of October 9, 2023) of the multisectoral and interministerial 2023-2027 plan to protect and support persons with Albinism (PAPPA 2027)³⁴, a significant step forward to provide integrated protection, care, and support to a significant vulnerable minority group.