Neglected diseases are those that do not receive enough research. They do not get funding, treatment, or attention as they should. These decisions depend on the number and extent of affected populations.

“I propose an investment opportunity. Governments and donors must know they will get a return on what they spend. With less than 50 cents per year, you can protect someone from the most common neglected diseases. This leaves them out of the disease cycle. Also, it allows them to lift yourself out of poverty a little further. And as they work, they contributes to the rest of society”, explains Dr. Mwele Ntuli Malecela

He is director of the department for the control of Neglected Diseases (NTD) of the World Health Organization (WHO). There is a group of 20 illnesses that affect to more than 1,000 million people. Thus happens mainly in the poorest areas of the planet. 

“You must calculate the magnitude of the return. Take into account that small investment. Compare it with the productivity it’ll generate. The result is enormous. This is key to the path to prosperity that many countries are pursuing.” He adds.

The congress of the NGO network of Neglected Tropical Diseases

Lack of sufficient investment and care can result in diseases such as leprosy. There is a congress of the NGO network of Neglected Tropical Diseases (NNN). It was held these days in Liverpool. It had a large representation of organizations, experts, and affected by leprosy.  As Arun Kumar, who was able to deal with the speed needed to recover. 

“Every day, a child with leprosy becomes disabled due to not being treated in time. This is a failure for the health system and for everyone,” he asserted.

Dr. Malecela attended this week the NNN platform conference. It was held in parallel to the European Congress of Tropical Medicine. There, she presented the work that is being carried out to agree on a roadmap for NTDs. Along with the Sustainable Development Goals (SDGs). This last establishes the reduction by 90% of the people who need care for neglected diseases.

The agenda of the objectives for each ETD was explained. It was present in all the conversations of organizations and experts during the NNN conference. 

“More than 100 consultations have been made to dozens of experts. Also to people interested in NTDs from all over the world,” Malecela explained.

All attendees agreed to work coordinately with the health system. And attend the different diseases.

The carrot and celebrities to get financing

Dr. Malecela admitted that health does not change everything. But she asserted it opens up a huge possibility to get out of poverty. 

“Take the example of a fisherman in Tanzania, where I am from. He has a fever and the disease leaves him in bed for seven days. This can affect his family; he depends on his job to eat. It is even worse if they go through a time of food crisis.” 

You will face difficulties like dressing your children and sending them to school. 

“It sounds very simplistic but it is the daily reality for many people. If that fisherman does not fall ill, he will be able to work. Therefore, make life easier for himself and his family.”

Donor funds investing in ETDs are not abundant. Warren Lancaster, deputy director of programs for The END Fund, the North American philanthropic initiative for NTDs, made two recommendations. Addressed to organizations in the search for funds: 

  • First, “persuade with the carrot of an investment. Present achievable and attractive objectives”
  • Secondly, get the support of champions or celebrities. Get them to publicly support an NTD. That’s the best strategy.

Political diseases. Or what happens when they drink some coffees

Arianne Shahvisi is a young Ethics Professor at Brighton and Sussex Medical School (UK). She participated in the opening of the conference. She underlines the need to work in NTDs with a social and ethical approach. For this, he used the example of podoconiosis. One of the diseases with the simplest solution of all NTDs: wearing shoes.

“NTDs are not a homogeneous group.  They are unusual from a medical and scientific perspective. These are parasitic infections (schistosomiasis, for example), bacterial (such as leprosy) or protozoa (such as Chagas disease).  They have one thing in common:  They do not receive enough attention, research, funding and treatment. They get treated depending on the number and extent of affected populations. In other words, they are diseases of a social or political cause.” Explains Shahvisi. 

She wanted to illustrate that the health of some people is not being cared for. 

“The lack of resources for NTDs are part of colonial inheritance.  To attend to them we cannot do it from a neocolonial approach.” She says.

Neglected Diseases

What does that mean? 

“You have to count on the community. And above all, listen to the affected people when looking for solutions.”

The word “listen” has been, all over the “WHO roadmap”. One of the most mentioned expressions in the NNN work sessions. It is the gateway to carry out scientific initiatives. The origin of real approaches focused on the real needs and contexts of those affected.

“in the rural and mountainous areas in Ethiopia, a person wearing shoes can indicate that they are affected by podoconiosis. (This causes significant deformation of the feet with a very pungent odor). Some prefer not to wear them, but if they do not wear them, they get infected. It’s a non-stop cycle. Although the solution (shoes) seems simple, carrying it out is not so easy. We must take these people’s social context into account.”says Shahvisi.

In her presentation, the expert used the example of well-known coffee brands. She divided the world into a global north and south. 

“These are brands that sell Ethiopian coffee. (where there are 1.5 million people affected by podoconiosis). Those of us who consume it cannot change many things. But we must ask ourselves how the people who harvest the coffee we enjoy live. The other option is not wanting to know ”.

Gail Davey, current coordinator of the NNN, is an epidemiologist. He one of the greatest experts in the world of podoconiosis. He followed in the footsteps of his compatriot, British surgeon Ernest W Price. Price described the etiology of the disease in the 1970s in Ethiopia. 

Davey is in charge of the Footwork organization for the prevention and treatment of this disease. Gail advocated for podoconiosis to be included in the WHO NTD group. As well as in the list of priority diseases for the Ministry of Health in Ethiopia. She worked there for nine years.

For Gail, the NNN platform has contributed a lot in its 10 years of existence. The communities of each disease are becoming more integrated. They work with aspects of common interest. (Water and sanitation, disabilities suffered by many NTD patients, or the movements of the affected population.)

“The working groups that we have formed provide a very relevant exchange of knowledge. We are more than 80 NGOs that work in NTDs. We share common challenges. That is why it is very important to support the roadmap proposed by the WHO. Hence the large presence of several of its representatives here. As well as the presence of the communities of affected people. They are the center of everything we do.”

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