I had the privilege of attending the International Leprosy Congress from 7th to 9th July 2025.
The conference hall was buzzing with 800 delegates speaking more than thirty languages from across the world — recently graduated scientists rubbing shoulders with experts who have served the leprosy-affected community for 60 years and more, the torch of wisdom and passion being passed to the new generation, which will hopefully be the generation that finally eliminates leprosy.
People affected by leprosy who attended the congress spoke movingly about their experiences of stigma and the trauma caused by leprosy. They appealed for more effective treatment to prevent disabilities. They also pleaded for more funding for their self-help associations. They struggle to make themselves heard by their governments.
The good news is that better medicines are in the pipeline, as are more effective diagnostic tests, but it will take years to roll out these new tools. A careful process of testing and evaluation is needed before these new interventions are approved for mass distribution.
One of the people affected by leprosy who addressed the congress was Amar Timalsina. It was a joy to meet him again in person. He is a supremely accomplished advocate for his fellow patients. He recently undertook a global survey of the practical realities facing leprosy patients, focusing on their rights and responsibilities.
In response to his survey, one of the patients said:
“As a person affected by leprosy, I didn’t know that I had rights.”
One of the trends emerging in leprosy, now that the number of patients is in decline, is that those people who contract leprosy are contracting the severe form of the disease – this is a pattern seen across the world, including South Africa, where almost all new patients have the severe form of leprosy.
This trend has many implications for our work. Firstly, it means that patients must take treatment for extended periods — in some cases, for at least two years. In a few instances, patients must take treatment for life. By contrast, in the case of mild leprosy, treatment lasts for only six months. Worryingly, severe leprosy is associated with extensive nerve damage, and these patients are vulnerable to the loss of protective sensation and disabilities. Treatment does not always prevent this loss of protective sensation.
The cost per patient is set to escalate, which means that we will have to raise a lot more money in the years ahead to ensure that patients are correctly treated.
Many big questions in leprosy remain unanswered. We know that social issues play a huge role in the transmission of leprosy, but how and why this is the case is unknown. Answering this question could help us discover better ways to treat leprosy.
The final session of the conference was a practical session where we learnt to use our computers to map the distribution of leprosy. I was amazed at how good these computer programs are and thrilled to discover that they are available to us, free of charge. Mapping tools will go a long way to helping us understand where the needs are and allocate resources accordingly.
Technology is helping in other ways. 3D printers are being used to produce splints for fingers and hands to prevent the ‘clawing’ of hands that have been paralysed due to nerve damage. This plays a big role in preserving hand function, the loss of which makes it difficult to write or to fasten buttons and shoelaces. 3D printing is also being used to produce insoles for shoes, which distribute the weight of the person across the sole of the shoe, helping to lessen the possibility of foot ulcers developing when the patient walks. Handheld scanners are used to produce an image of the foot — these images are sent to a central workshop, which makes the insoles and mails them back to the patient, providing a speedy and cost-effective way to keep leprosy patients mobile.
Some of the shoes now have sensors inside, which are connected to a vibrating bracelet on the patient’s wrist. If they take long strides, the bracelet vibrates, warning them to take shorter steps. Short steps place less stress on their insensitive feet and reduce the possibility of bruising and ulcers.
I left the conference feeling confident about the progress we are making towards eliminating leprosy. So much needs to be done, but we are in good hands — experts in many fields are dedicated to finding new ways of fighting this ancient enemy. I am in awe of them and their relentless pursuit of excellence in the fight to make the very best care available to people suffering from leprosy.
Read more about ILC 2025 on their official website.