Steps towards eliminating Hansen's disease stigma

Abstract

Persons affected by Hansen's disease (PAHD) can develop long-term physical disabilities and psychological problems if the disease is not managed promptly and correctly. The complex and multi-faceted nature of stigma related to Hansen's Disease, and the discrimination arising from it, demands multiple parallel steps to improve the health, well-being and lived experience of People Affected by Hansen's Disease, including: 1) adoption and pursuance of a human rights based approach; 2) revocation of discriminatory laws; 3) education and training for healthcare workers; 4) new techniques and therapies to diagnose and treat HD without side-effects and to reduce risk of disabilities; 5) elimination of stigmatising terminology.

Hansen's disease (HD, also known as leprosy) can cause long-term physical disabilities and psychological problems if the disease is not managed promptly and correctly. The incidence of HD has decreased significantly worldwide, from more than 5 million new cases in the 1980s to 133 802 cases in 2021.¹ Early detection and prompt treatment can significantly reduce the burden of HD. Effective multidrug therapy (MDT) has been available through the World Health Organization (WHO) free of cost to all patients worldwide since 1995, and more than 17 million patients have received MDT over the past four decades.² Societal levels of stigma cannot be easily and reliably quantified, but it is known that persons affected by HD (PAHD) and their families continue to experience stigma.³

A typography of stigma related to HD would include: 1. individual stigma, arising societally and directed towards PAHD and their family members from within the communities in which they live (public stigma), which is then internalised by people with the disease (self-stigma); 2. stigmatisation by healthcare workers that manifests in the way in which providers of care express themselves and behave towards PAHD; 3. institutionalised stigma, represented by factors such as the distant location of outpatient clinics for PAHD, lack of training for health care workers and inadequate psychosocial care for PAHD; 4. structural stigma at the level of officialdom leading to underfunded services, lack of innovation in diagnostic techniques and therapeutic approaches, and deprioritisation of research.

The complex and multifaceted nature of stigma related to HD, and the discrimination arising from it, demands multiple parallel steps to improve the health, well-being and lived experience of PAHD.

1. Adoption and pursuance of a human rights-based approach to motivate public and private interventions in HD-related stigma beyond the historical medical and charitable models. The UN Human Rights Council first adopted a resolution on HD in 2008 that endorsed principles and guidelines for the elimination of discrimination against PAHD and their family members.⁴ Resolution 65/215 on the elimination of discrimination against PAHD and their family members constitutes a rights-based instrument that safeguards PAHD and their family members. The resolution serves as a guide for the application of international human rights law in the specific case of PAHD and their family members, including protecting the right to work, education and training; the full realisation of dignity and self-worth; and the right to be involved in decision-making processes regarding policies and programs that directly concern their lives. The first UN Special Rapporteur on the elimination of discrimination against persons affected by HD and their family members was appointed in 2017 by the Human Rights Council, a mandate extended by ≥3 years in 2020.

2. Revocation of the 139 discriminatory laws in existence against PAHD in 24 countries, many of which stipulate segregation and isolation of PAHD from their communities and families.⁵ A 2010 report by the UN Human Rights Council concluded that, in many parts of the world, PAHD and their family members continue to face multiple forms of discrimination and widespread barriers to their participation as equal members of society, including isolation and violations of their human rights. The final draft of principles and guidelines was approved and invites the UN General Assembly to consider the issue of leprosy-related discrimination.⁶

3. Development and evaluation of community-based group and individual interventions to address self-stigma and public stigma,⁷ and education and training for healthcare workers to address stigma towards PAHD in healthcare settings.⁸ Although HD has been the focus for a range of novel stigma-reduction interventions, such as rights-based counseling (involving peer and lay counselors and delivered to PAHD and their families) and participatory videos,^9,10 the number and quality of studies are limited.⁷ Professional and service development programs must engage with PAHD and advocacy groups to improve healthcare workers’ knowledge, attitudes and practices, and provide patient-oriented services that reduce stigmatisation.¹¹

4. Although MDT has been successful in reducing the global burden of HD, new diagnostic techniques and therapies are needed to treat HD without adverse effects and to reduce the risk of disabilities, both of which can contribute to stigmatisation. In the meantime, diagnosis and treatment must be delivered by multidisciplinary teams (including HD specialists) and be patient-centered and inclusive of care for patients’ mental health and psychological and social well-being.

5. The phasing-out of stigmatising terminology, including renaming the disease as in Brazil (by official decree)¹² and, increasingly widely, in the USA and other countries.¹³ Here, the main driver of change has been pressure from civil society groups; for example, in Brazil, the Movement for the Reintegration of Persons Affected by Hansen's disease (MORHAN, Movimento de Reintegração das Pessoas Atingidas pela Hanseníase) is supported by professionals who engage with patient rights and health policy. Appropriate terminology might be country-specific, but international guidelines exist for naming diseases to avoid stigma and discrimination.¹⁴

One of the four pillars of the WHO ‘Global Leprosy Strategy 2021–2030: Towards Zero Leprosy’ is to ‘Combat stigma and ensure human rights’,² based on recognition of the huge personal and familial impact of stigma and discrimination against PAHD and its role in impeding public health programs to control and, ultimately, eliminate HD. The first of the five steps that we have outlined above represents the laying of the foundation stone on which this pillar must be built, namely protecting the human rights of PAHD. Progress in taking the other steps has been slower, demanding sustained and coordinated efforts by policymakers, particularly in countries that remain endemic for HD, but also at a global level where funding and influence tend to be concentrated. At a national level, the Brazilian government has created an Inter-ministerial Committee for the Elimination of Tuberculosis and other Socially-Determined Diseases (CEIDS), with representation from nine ministries including those of human rights, education, racial equality and indigenous people, and whose remit will include actions to reduce all types of disease-related stigma in parallel with elimination of the disease itself.

Authors’ contributions

PD conceived of this commentary; all authors contributed to drafting the manuscript and approved the final version.

Funding

This commentary received no funding, and there are no sources of funding to declare.

Competing interests

The authors declare no competing interests.

Ethical approval

Not required.

Data availability

This commentary has no associated data.