Opinion by Mathias Duck
Opinion by Mathias Duck, Global Advocacy Lead at TLM
The next International Leprosy Congress (ILC) will be in November 2022 in Hyderabad, India. The Congress happens every 3 years and it is organised by the International Leprosy Association (ILA). The last one was in Manila, Philippines in 2019 and the previous one in Beijing, China in 2016.
Disease-specific congresses are usually quite scientific in nature. They create space for the sharing of knowledge among experts. Leprosy is not the exception. It is a disease and there is much to learn about the bacteria that causes it, its transmission, its early detection and treatment, prevention and/or management of impairments and ulcers, reconstructive surgery, and mental health, among many other related issues. In the leprosy community, many experts from different fields have contributed enormously to the shared knowledge we have today.
At the same time, there is a community of people who are experts by experience. These are people who have or have had leprosy and their family members. They might not have acquired their expertise in an academic setting, but, within their own bodies, minds, families, and communities. They know exactly what it means to have leprosy, to live with reactions, impairments and ulcers. They know what if feels like to be discriminated against by their families and communities. They are also experts in finding ways to improve their own lives and their families and communities, despite all the adversities.
There seems to be a recognition within the global leprosy community that we need both kinds of expertise. We need the academic rigour and research, and we need the real experience. We need doctors, scientists and experts and we need persons, families and communities of persons affected by leprosy. We need the constant dialogue that leads us to improve conditions for so many people affected by leprosy and their families.
In 2019 in Manila, we had an encounter of the Forum of Organisations of Persons Affected by Leprosy, preceding the ILC, which was organised by the Sasakawa Health Foundation. Many persons affected were able to attend both the Forum and the ILC. However, that was before the Covid pandemic. The post pandemic realities make international travel and conferences much more complex and expensive. So much so, that the Forum for Organisations of Persons Affected by Leprosy has not been confirmed yet.
We need the international community of persons affected to meet in November in Hyderabad. We need the voice of persons affected to be represented. We need the voice to be strengthened by mutual learning and encouragement. We need the constructive criticism and a voice of reality at the ILC 2022 in Hyderabad.
The fact that the ILC is happening in India is very important. India still has the most leprosy cases per year, with two thirds of all cases worldwide found in India. There are also still about 100 discriminatory laws in effect in India. At the same time, a lot of significant research and work is happening in India. Many practitioners, doctors, scientists, and experts from all over India will attend the ILC. Hopefully, many persons affected from India will be able to attend and contribute to the shared learning.
For most persons affected by leprosy, the cost of the ILC attendance is prohibitive. Even for people living in Hyderabad, attending the ILC would cost over 200 USD (attending online costs about 90 USD for participants from India). This could be more than a monthly salary for a person affected by leprosy. If they come from somewhere else in India, travel, accommodation, and meals add to the cost. It is also important to take into account that these days also represent lost wages and that there might be other incidental costs.
These costs and the time involvement increase significantly if the persons affected are coming from other countries. The registration fee for international participants is just over 700 USD (200 USD for online registration). Air travel, accommodation, meals, visa and other costs related to documentation and/or health requirements also need to be taken into account. Unfortunately, the question of participation of persons affected by leprosy at the ILC is a matter of financial resources.
Most persons affected will depend on other organisations, NGOs, government agencies, and others in order to attend. Perhaps it can be said that those persons affected for whom the participation at the ILC seems more impossible are the ones that need to be there the most. They are the ones who live the hardest realities, they need to have their voices heard, they have a lot to contribute and for them, the ILC could be an experience of empowerment.
Within the disability community there is a saying: Nothing about us, without us. A few days ago, I heard a person with disabilities say: Nothing without us. She explained: sometimes they think it´s not really about us, but most things are about us, because we are part of society and everything that happens in society affects us in some way.
Hopefully, the ILC 2022 in Hyderabad will be an event in which meaningful participation of persons affected by leprosy is a reality at any and all levels and at any and all stages.
