Background

Since late 2023, significant delays and shortages in the production and distribution of multidrug therapy (MDT) for the treatment of leprosy have been reported in several countries. These disruptions have adversely impacted access to timely diagnosis and treatment, putting at risk the health, dignity, and rights of persons affected by leprosy, and potentially undermining national and global efforts toward disease elimination.

The right to health, including access to essential medicines, is a fundamental human right recognized in international human rights law. Interruptions in the supply of MDT can lead to serious consequences, including prolonged suffering, continued transmission of the disease, social exclusion and discrimination, and preventable long-term disability. It also strains already limited healthcare resources, particularly in underserved and high-burden communities.

Objectives

As part of her mandate, the Special Rapporteur is preparing a report to the General Assembly. Her GA report in 2025 will focus on the right to medication and treatment for persons affected by leprosy, with an emphasis on the impact of MDT shortages and delays. To inform this report, this questionnaire seeks to collect information from Member States and relevant stakeholders to better understand the scope and the underlying causes of the problem, the measures being taken to address it as well as to identify good practices, persistent challenges, and areas for international cooperation.

With this aim, the Special Rapporteur intends to provide an overview of the impact of delays and shortages in leprosy drug distribution on the right to medication and treatment, highlighting key challenges and urgent opportunities. The report will therefore address the following areas: 1) Access to leprosy medicines and services; 2) MTD production and supply chain; 3) Impact of an human rights concerns; 4) Recommendations and good practices.

Your cooperation in completing this questionnaire is essential and highly appreciated.

Key questions and types of input/comments sought

1. ACCESS TO LEPROSY DRUGS (MDT)

1.1.Stock availability
Does your country maintain an adequate MDT stock?
☐ Yes
☐ No
☐ Partially – Please describe: ______________

1.2.Supply disruptions
Have there been MDT supply delays or disruptions from 2020 to 2025?
☐ Yes – Please describe reasons, duration, impact: ______________
☐ No

1.3.Procurement & distribution
How are MDT drugs procured, stored, and distributed (centralized vs. decentralized)? Who is responsible?

1.4.International support
Do you collaborate with international leprosy organizations in procurement/distribution?
☐ Yes – Please describe: ______________
☐ No

1.5.Process challenges
Which step (procurement, storage, distribution) is most challenging and why?

1.6.Equity in access
Are certain regions or groups (e.g., remote areas, indigenous populations, migrants) more affected?
☐ Yes – Please describe: ______________
☐ No

1.7.Mitigation measures
What measures ensure continuous MDT supply, especially in underserved areas?

1.8.Policy and legal framework

Is there a national policy or legal framework specifically ensuring access to MDT and protection of the rights of persons affected by leprosy?
☐ Yes – Please describe or cite the relevant law/policy:
☐ No

1.9.Inclusion in essential medicines list

Is MDT included in your country’s national Essential Medicines List (EML)?
☐ Yes
☐ No
☐ Under discussion

2. PRODUCTION AND SUPPLY CHAIN

2.1.Local/Regional production
Is your country involved in producing leprosy drugs or components (e.g., clofazimine, dapsone, rifampicin)?
☐ Yes – Please describe: ______________
☐ No

2.2.Donations
Do you receive MDT via donations (e.g., from WHO, Novartis)?
☐ Yes – Source: ______________
☐ No

2.3.Direct procurement
If purchasing directly, indicate the sources and note any procurement difficulties (costs, regulations, etc.).

2.4.Stock monitoring

Is there a national or regional stock monitoring system to track MDT availability in real time?
☐ Yes – Please describe (manual, digital, integrated into broader health systems, etc.):
☐ No

3. IMPACT AND HUMAN RIGHTS CONCERNS

3.1.Consequences of delays/shortages: (Select all that apply)
☐ Delays in diagnosis/treatment
☐ Increased relapse/disability rates
☐ Heightened stigma/discrimination
☐ Other – Please describe: ______________

3.2.Contingency plans
Has your government implemented any emergency plans for MDT shortages?
☐ Yes – Please describe: ______________
☐ No

3.3.Research initiatives
Has any research been conducted on the impacts of MDT disruptions?
☐ Yes – Please describe: ______________
☐ No

3.4.Stakeholder involvement
Have persons affected by leprosy been consulted in addressing drug access challenges?
☐ Yes – Explain mechanism: ______________
☐ No

3.5.Compensation measures
Has any compensation been provided for MDT shortages?
☐ Yes – Please describe: ______________
☐ No

3.6.Gender and age dimensions

Do MDT access and service delivery consider the specific needs of women, children, or elderly persons affected by leprosy?
☐ Yes – Please describe how:
☐ No

3.7. Feedback and accountability mechanisms

Are there mechanisms for persons affected by leprosy to provide feedback or lodge complaints regarding MDT access or health services?
☐ Yes – Please describe: ______________
☐ No

4. GOOD PRACTICES AND RECOMMENDATIONS

4.1.Innovations and best practices
Please describe any successful initiatives (e.g., digital tracking, community distribution, training of health workers).

4.2.Support needed
What support from international organizations or partners would improve MDT access?

4.3.Additional comments
Any further comments, concerns, or recommendations?

How inputs will be used?

The input will be used to inform the report of the Special Rapporteur on leprosy to the GA 80 session. Kindly note that all submissions will be posted on the OHCHR website.