Rationale for investing in NTDs

WHO NTDs Department has recently launched another companion document to the NTDs Road map 2021-2030: A rationale for continued investment in tackling neglected tropical diseases. This new publication was written to motivate investment to reduce the burden of NTDs for millions of people worldwide.

The publication emphasises that investing in actions to combat NTDs is both economical and equitable. NTDs affect the health and well-being of more than a billion people worldwide and impose an unfair health and economic burden on the world’s most marginalised communities. But cost-effective interventions already exist for many NTDs: many of these are affordable even in low-income countries, and integrated approaches can reduce costs further. Tackling NTDs is thus seen as a vital contribution to economic prosperity, equity, and human health and well-being. Four country case studies are used to show the benefits of implementing cross-cutting approaches.

The investment rationale concentrates on cost-efficient interventions that will consolidate the gains of recent years and accelerate future progress: what the Roadmap calls ‘best buys’. These include continuation of proven cost-effective interventions, particularly preventive chemotherapy. In addition, there is the need for greater attention to diagnostics, monitoring and evaluation, access and logistics, and advocacy and funding. WHO emphasises that plugging these gaps by means of intelligent investment will contribute not only to lessening specific disease burdens but also to strengthening health systems in general.

The publication also draws attention to areas in which there is insufficient economic evidence. This is a very critical matter at a time of budget cuts and realignments of national and international priorities, and the threat that the Covid-19 pandemic will reverse decades of hard-won health gains.

WHO’s central argument is that investment in NTDs is fundamentally an investment in health systems and in the resilience of communities, both of which yield tangible benefits for people the world over.

Intelligent investment up front can save billions down the road. On the basis of the rationale set out in this publication, WHO calls on national governments and international funders to prioritise investment in NTDs.

Special Rapporteur’s report to UN General Assembly

UN Special Rapporteur Alice Cruz made her second report to the United Nations General Assembly this month. The topic is the limitations and challenges around national legal protections of the rights of persons affected by leprosy and their family members.  The report is currently available in English: other languages will follow.

Disability and impairments

Ms Cruz observes that disability, rather than impairment, is what marginalises, excludes and dehumanises people, but that ‘disability’ and ‘impairment’ are often confused in leprosy. She notes, for example, that the WHO gradings (up to Grade 2, visible impairments) are described as disability gradings but do not take into account the disability that results from the interaction between impairments and attitudinal or environmental barriers. Moreover, they count persons with impairment at the time of diagnosis but do not count persons who experience evolving impairments after release from MDT treatment.

Ms Cruz argues that the issues for people affected by leprosy have been left largely unexamined in guidance about disability, and suggests three reasons for this:

• Leprosy is still predominantly seen as a health problem, not a disability issue
• Leprosy related services have in many settings been delivered primarily by NGOs who have engaged in rights-based approaches only comparatively recently
• Leprosy occurs mainly in the global South whereas much of the global narrative on disability comes from the global North

Persons affected by leprosy should therefore be classified as persons with disabilities in the CRPD convention, on the basis of prevalent physical and sensory impairments, widespread discrimination based on harmful stereotypes about leprosy, and the degree of psychological impairment that results from this discrimination.

Legal protections exist …

The Special Rapporteur’s research, and responses to her questionnaire, show that many countries maintain a solely medicalised approach in their disability-related regulations, and very few have provisions specifically for leprosy. More positively, some of the 23 WHO priority countries for leprosy do have regulatory frameworks in place in line with the social model of disability and the CRPD convention, and the report examines the provisions in place in five of these countries.

… But barriers are widespread

The analysis shows that many barriers continue to prevent people gaining full access to their rights, despite the legal protections that may be in place. There can be a stark difference between people’s legal rights and their experience of trying to access those rights ‘on the ground’. Examples include:

• Medicalised definitions of disability and disability levels, especially significant in situations where medical practitioners need to ‘sign off’ on disability entitlements
• Lack of information on rights and entitlements, or the unintelligibility of the information being provided
• Paternalistic or abusive attitudes by duty-bearers that prevent access to benefits
• Systemic discrimination that prevents access to healthcare workers or other officials

Recommendations

The Special Rapporteur concludes with a series of recommendations to UN States on their concepts of disability; on promoting equality and non-discrimination; on improving access to information; on strengthening access to health and rehabilitation services; on decent work and employment; on social protections; on access to justice and effective remedies; and on data collection.

ILEP welcomes the Special Rapporteur’s report and advises a close reading of it. ILEP supports her recommendations and joins her in calling on Member States to take positive actions to build and improve legal protections around the rights of persons affected by leprosy and their family members.