May 2, 2019
The World Health Organization (WHO) and the United Nations (UN) have said that disease prevention and treatment will help to reduce poverty and economic disparity. According to Dr Paul Saunderson, the Medical Director at American Leprosy Missions and chair of ILEP’s Technical Commission, understanding the small details could make all of the difference to the way leprosy is seen and treated.
“One thing I’ve noticed is that there are a lot of small things that are misunderstood about leprosy,” said Dr Saunderson. “Many other neglected tropical diseases (NTDs), are quite common where they occur, so there may be a lot of knowledge around them, such as the broad data in a country, etc. But if you are trying to map leprosy which is generally quite rare, you are doing so along with everything from trachoma, Buruli ulcer, cutaneous leishmaniasis to scabies, yaws or even tuberculosis. There is now an interest in case detection and management as a group, which could allow for better tracking of leprosy cases.”
Many NTD surveys do not need intensive individual data and can estimate numbers in a community, based on sample surveys. This is not the case with leprosy, as the cases are not evenly spread through the community but occur in clusters. In 2009, M.I. Bakker, et al. concluded that a geographical information system (GIS) was necessary to research, manage, have public health focussed interventions, plan and monitor control programmes, and have effective advocacy programmes at the national or sub-national level.
Dr Saunderson emphasised that surveying for leprosy can be time intensive and expensive: “We map based on the patients that we know, and these patients tend to be clustered and unevenly distributed. Historically, the data has been inaccurate for a number of reasons including the fact that it is one of the world’s most stigmatised diseases. Because of their disabilities, people who are affected by leprosy can be shunned, discriminated against and denied their human rights. This stigma affects their physical, psychological, social, and economic security. It is often the financial burden that hurts the most and so the affected who are treated early enough may never admit to having had leprosy.
Regardless of the cost or the reality that getting accurate numbers would be difficult, donors rely on data and mapping to support their health programme funding. But the quality and the scope of the data can be less than ideal, as leprosy can be hidden and sporadically found in a community.
“We have to present our data in different ways,” said Dr Saunderson. If an NGO has people affected by leprosy involved, then alongside whatever data they have they can present a series of anecdotes or experiences. “This would not show the range that better data would, so wouldn’t be perfect from the start, but some organisations are ready to start with something, showing some way of measuring progress.”
When talking about data gathering and organisations that do so, Dr Saunderson said that data was gathered and managed in different ways. This means that you may not be able to compare numbers gathered by one organisation to another. These same organisations often also deal with other diseases, so leprosy gets dropped off the radar because it is paired with a bigger problem. Money from donors for NTDs (or other diseases that leprosy is paired with) is not secure, so the money for one can be at the expense of the other, and that is something that Dr Saunderson would like to avoid.
And because leprosy tends to fall off the radar, Dr Saunderson worries that the top endemic countries won’t ever make a concerted effort to make it a focussed part of the health agenda.
The local health agenda, according to the WHO, should include health system strengthening and improving services at the local level. Though not considered particularly innovative, better services would bring more attention to leprosy case detection.
What is innovative, according to Dr Saunderson, is the ongoing clinical trials of LepVax, the world’s first leprosy-specific vaccine. Dr Saunderson hopes to see clinical trials in Brazil and India by 2020 but they will likely take five or six years. Over the next 10 years he hopes that the vaccine will be widely deployed. Along with the vaccine, Dr Saunderson noted that post-exposure prophylaxis (PEP) has had very positive results at minimising transmission by reducing the number of new cases. By having both accessible, there would be a longer term advantage.
“Innovation is only a part of the solution,” said Dr Saunderson. “But it could be a very big part.”