Village interaction

During our journey, the one thing we realised was that we could not work from within the bubble of our lab - the most crucial part of our project would be to understand the day-to-day realities of the disease, to connect with the people who are actually at risk.

The Leishmania parasite has been a health hazard for centuries, and we have still not been able to help the people affected by it. These are people who are daily wage labourers, and every day spent in a hospital undergoing painful treatment means a day where they can’t earn to feed their family. And so we set out to meet the residents of one of the villages within an area affected by leishmaniasis. Our goal was to provide them with the knowledge to prevent this as well as other diseases and to recognise symptoms in time to get help.

The village residents were extremely welcoming and participative. They not only tried to understand the details of the disease but also followed with a lot of questions, which we tried our best to answer. The experience allowed us to help them be more aware of the risks of negligence and the measures they could take within their means.

Almost as importantly, the interaction gave us a very important perspective of the disease we were tackling - an understanding of the population that could be affected by it. This helped us revise the nature of the treatment we would need to design, in order for it to be applicable and useful. We decided to focus on creating a treatment with minimal side effects and minimal time spent under medical care, at the least possible cost. This is how we designed our genetic circuit such that only the infected macrophages would be targeted, minimising harm to the individual’s immune system.

Our discussions with the inhabitants also gave us an idea of the aspects of the disease that we needed to further inform them about. This was something we achieved later in our journey through a nukkad naatak, or Street Play.

General Survey

Leishmaniasis is classified as a Neglected Tropical Disease. To know the cognizance of the public about this deadly disease, we circulated an online questionnaire focussed on the state of awareness about Kala Azar.

The survey audience consisted of individuals within the age group of 18-50 years.

Inference

Most of the survey audience had heard about the disease through one or the other medium. A significant portion of the audience came to know about the disease through our awareness efforts. The majority of people had previous knowledge through the course of their academics.

Inference

Even though the survey was conducted in India, a hotspot of the disease, the audience was largely unaware of the seriousness of the disease.

Inference

The majority of the audience were aware about the cause of this disease. At the same time, a significant portion of the answers were incorrect. Though a large majority had heard about the disease, they did not know the technicalities of it.

Inference

Leishmania parasite infects with the help of the sandfly vector. A better part of the audience knew the correct answer. Still, an even less number of people were aware about it. As we went deeper and deeper into the specifics, number of correct answers kept on reducing.

Inference

Bihar and West Bengal are the hotspots of leishmaniasis in India. A significant number of people gave the correct answer, still the number is less. People were mostly unaware about the occurrences of the disease.

iGEM Survey

After having surveyed our peers, friends and family, we decided that we needed to know how aware other iGEM teams from around the world are, about the disease we are tackling. Representatives of several iGEM teams participated by filling out our form.

Inference

Since the survey audience were members of other iGEM teams, a better portion of them knew about the disease as compared to our preceding survey. Nevertheless, a significant portion were unaware about it. None of the audience had read about the disease in detail. This indicates that the disease befits its WHO classification as a 'Neglected Tropical Disease'.

Inference

Most of the survey audience was unaware about the expense in terms of treatment required for treating the disease, although a significant portion answered correctly, saying that the treatment is high-priced and out of reach to most of society.

Inference

The answers are evenly distributed. Only a small number of the people knew that this disease affects mainly people from a weak economical background.

Inference

Only a small part of the survey audience knew that the disease is caused by a protozoan. This indicates that even though many people had heard about the disease, detailed knowledge was found lacking.

Inference

While 50% of the people knew that this disease is transmitted through a vector, others were either unaware or under the impression that the disease is transmitted through blood and serum transfusion.

Inference

While most of the survey audience was aware of the fact that the hotspot Kala Azar is in the tropics, a notable number were oblivious to it.

Data collected and analysed using Google Forms