Access delayed, rights denied

This year’s report to the UN General Assembly by the UN Special Rapporteur for leprosy, Beatriz Miranda Galarza, focuses on bottlenecks in the leprosy drug supply chain and their impact on affected persons. The Special Rapporteur’s starting point is that timely access to medicines and treatment is a fundamental human right. Since delays in leprosy medicines proportionately affect marginalized populations, and present greater risk of disability, this basic right is reinforced by the Convention on the Rights of Persons with Disabilities. This obligates States to ensure equality, including adequate healthcare, for persons with disabilities, including those affected by leprosy. How then to respond to what happened in Nigeria in 2024, when delays in MDT supply resulting from new domestic testing rules and bureaucratic delays affecting around 3,000 patients including 800 children?

Right to treatment

The Special Rapporteur makes the case that a human rights-based approach links access to medicines with broader State obligations to eliminate discrimination, marginalization and health inequities.  She observes that WHO includes multidrug therapy for leprosy (MDT) on its Model List of Essential Medicines that require continuous availability. She then considers the issue from the perspective of international legal obligations and the CRPD and other global human rights conventions, and gives examples of courts in leprosy-endemic countries that have interpreted access to medicines as an enforceable human right.

Leprosy drug supply chain

The Special Rapporteur then examines the supply chain for MDT, remarking that this is especially important because, unlike many other drugs, MDT is not commercially available. Her report covers manufacturing and production, forecasting and procurement planning, donor coordination and international procurement, international shipping and customs clearance, and national warehousing and internal distribution. For each element, she provides specific examples of bottlenecks that have caused, or have potential to cause, delays preventing patients from getting the drugs they need. For readers interested in how the supply chain works and what can go wrong, this is instructive material.

Impacts on persons affected by leprosy

The Special Rapporteur describes the negative consequences of treatment delays caused by drug stock-outs. She describes impacts in terms of greater risk of nerve damage and disability. There is also mention of drugs to treat leprosy reactions, and the report comments that these drugs are poorly prioritized, excluded from essential medicine lists, and face regulatory, funding, storage and distribution challenges. The report also looks at other consequences. Anxiety, depression and suicidal ideation are common among persons facing uncertainty about treatment. There are also economic and livelihood effects. The report summarises this section pointing out, among other consequences, that non-supply of essential leprosy medicines amplifies the risk of the disease spreading to close contacts, and that increased physical impairments as a result of delayed treatment have lifelong impacts on the individual – as well as costs to the state health system.

Conclusion and recommendations

The Special Rapporteur summarises her conclusions at the end of the report, along with a set of recommendations to UN member states and other stakeholders. She reiterates that access to leprosy treatment is a human rights issue, and that in leprosy the drug supply chain is fragile and donor-dependent: bottlenecks exist at every stage and may cause cumulative delays which have life-altering consequences for patients and their families. Overall, she finds that States have limited ability to forecast, procure or track medicines independently. One result is erosion in public trust in the health system.

The recommendations are comprehensive. The first set of recommendations covers the elements of the supply chain: ensuring predictable and timely supply of leprosy medicine, strengthening forecasting and procurement systems, addressing regulatory and customs delays, and improving last-mile delivery and storage. There are also recommendations around involvement of persons affected by leprosy in supply chain monitoring, redress for persons suffering negative consequences from delayed treatment; and working towards greater national self-sufficiency and less reliance on aid.