CRPD Conference of State Parties

ILEP member The Leprosy Mission (TLM) attended the United Nations’ 17^th Conference of State Parties (COSP) to the Convention on the Rights of Persons with Disability (CRPD) this month. The COSP presents an opportunity to speak about the rights of persons affected by leprosy, usually as the only voice for the disabling effects of leprosy and NTDs.

Side event

TLM hosted a side event on the rights of persons with disability to work, partnering with the Government of Malta and others. The meeting room was full, but the UNTV recording of the event is here. The panel included OPDs, UN entities, the World Bank, and academia, with a keynote address by  Ms Heba Hegrass, UN Special Rapporteur on the Rights of Persons with Disability.

Speeches at the conference

Two persons with lived experience of leprosy spoke at the conference. Amar Timalsina spoke during the Civil Society Forum on the right to work, with a particular focus on best practice. Mathias Duck made a speech during the general debate, asking delegates to remember leprosy and persons affected by leprosy through their work.

Progress on discriminatory laws

One of the founding principles of the CRPD is that there will be no discrimination in law against persons with disabilities. This makes the COSP an ideal space to talk to countries about laws that discriminate against persons affected by leprosy. At the last COSP, TLM started dialogue with Malta about an outdated discriminatory law which is now on the verge of repeal. Malta has offered support in speaking to the other nine Commonwealth nations with discriminatory laws. This year TLM started conversations with Australia about repealing two recently discovered discriminatory laws, and either continued or initiated linkages with UAE, Egypt, and Barbados which confirmed that a previous discriminatory law has been repealed.

CRPD Committee

The CRPD Committee is the body who is responsible for holding states accountable for their actions to implement the CRPD. The COSP elected new Committee members from Dominican Republic, the EU, Japan, Jamaica, Nigeria, and Uruguay. These individuals are in a position to draw the Committee’s attention to the rights of persons affected by leprosy, so they are valuable contacts.

Meeting with OPDs

The voices of persons affected by leprosy can be stronger when they are a part of the wider voice of the disability movement. When states seek to consult with Organisations of Persons with Disability (OPDs), for example, it is important that organisations of persons affected by leprosy are included. TLM built on the dialogue at the ILEP-hosted webinar on people’s organizations, which took place in January, by speaking to several OPDs that attended COSP17 to find out how organizations of people affected by leprosy can engage with these wider networks to have their voices heard.

Global Disability Summit 2025

Next year, the Global Disability Summit will be hosted in Berlin in April. At COSP17, the Summit hosts (Germany, Jordan and the International Disability Alliance) launched the commitment portal for the Summit and called on states, NGOs, funders and others to make measurable, impactful commitments related to the CRPD and SDGs. This year the portal allows for commitments in partnership with others, so ILEP members can make joint commitments or partner with other actors.

In the words of the organisers, ‘the process of developing the commitments is as important as the commitment itself’. IDDC offers briefing sessions on the Summit on 24 July and 25 September.

World Summit for Social Development 2025

This summit, scheduled for 2025, follows the major Summit for the Future in September, and is being pitched as an opportunity to reduce inequalities and to promote social justice, inclusion, equity and non-discrimination.

Any questions on COSP17 of the above developments can be directed to Mathias Duck and Tim Burton.

77th World Health Assembly

The ILEP Secretariat was in Geneva during the seventy-seventh World Health Assembly, held in the last week of May. The Assembly is the peak event for WHO each year. Big-picture outcomes this year were the adoption of WHO’s strategy or plan of work for 2025 to 2028, a resolution on climate change and health, and a resolution on social participation with a particular focus on promoting the voices of people in marginalized situations. But in addition to the main meetings there is a wide array of side events and opportunities for linkages and networking.

WHO Plan of Work 2025-2028

The Plan of Work – which is summarised in the table below – is important to ILEP and its members. Partly that is because organizations in official relations with WHO – like ILEP – are expected to develop and report on three-year cooperation agreements that need to link with the Plan of Work. But also, as ILEP members interact with WHO both globally and at country level, it is relevant to be able to refer to those elements of the Plan of Work that ILEP members are working collaboratively towards. The second objective (social determinants), third objective (health systems, including data) and fourth objective (especially equity of access to health services) seem particularly relevant. See here for the Director-General’s report that contains the 2025-2028 Plan of Work.

Climate change and health

In passing this resolution, Member States built on previous decisions that recognised the inter-relationship of climate change and health. The resolution points out that the pace and scope of mitigation and adaptation efforts are being surpassed by climate change threats, and that any further delay in concerted global action will miss a brief and rapidly closing window of opportunity to secure the goals of health and wellbeing for all.  It also points out that climate change is worsening existing health inequalities and that people in marginalized and vulnerable situations can be most at risk of negative climate change impacts. The commitments agreed by Member States are arguably not as strong as the identified risks, but there is agreement to strengthen the implementation of WHO’s global strategy on health, environment and climate change, without diverting resources meant for primary health care. Members interested in ongoing advocacy on the effects of climate change may find it relevant to look more closely at the resolution and also at the forthcoming global plan of action on climate change.

Social participation for universal health coverage, health and well-being

WHO defines social participation as empowering people, communities and civil society through inclusive participation in decision-making processes that affect health. This resolution repeated previous agreements about the need to promote participation of people in vulnerable and/or marginalized situations including persons with disabilities and those who are furthest behind. The resolution urges Member States to implement, strengthen and sustain regular and meaningful social participation in health-related decisions. The relevance for ILEP members working with people affected by leprosy is obvious. We recommend close study of the resolution especially by ILEP members that are working to empower organizations that represent persons affected by leprosy in interaction with central and local governments.

Skin Diseases as a Global Public Health Priority

This well-attended side event was hosted by the International League of Dermatological Societies (ILDS) and GlobalSkin, an international alliance of patients of skin diseases. Presenters showed that skin diseases stand in seventh place in terms of YLDs (years of healthy life lost to disability and illness) and affect 5% of the global population at any given time. Perhaps less surprising was the comment that data quality is a major issue across most skin diseases – not just skin NTDs. Follow-up actions by the ILEP Secretariat will include:

• Reconnection with GlobalSkin to advocate for inclusion of organisations of persons affected by leprosy and other skin NTDs in their networks. We previously discussed with GlobalSkin the limitations of the word ‘patients’ in their name and we will continue to develop that theme.
• Further discussion with Dr Kingsley Asiedu (WHO) around a comment in his speech urging ILEP to be more involved in the general skin diseases community.
• Response to a planned WHA resolution on skin diseases, proposed by ILDS, GlobalSkin and other stakeholders. The plan is to bring a resolution for the consideration of the WHO Executive Board in January 2025, calling for investment to expand expertise in skin diseases especially at PHC level; to expand research capacity to provide innovative diagnostic tools and new treatments for skin diseases; and to strengthen global skin health databases to inform planning needs and monitor progress.