Neglected diseases kill 500,000 a year worldwide

Anyone who has a disease will never see themselves as a point in statistics, and this is the main challenge of health care processes around the world — from the development of new drugs to the treatments themselves, through diagnoses, exams and analyses, each person needs to be treated humanely.

Hence the drama of all those who are affected — and many do not even know it — by one of the 20 diseases currently recognized by the World Health Organization (WHO) as neglected tropical diseases. These are known pathologies, many of them for a long time. But, as they generally affect vulnerable populations, they do not attract the attention of the pharmaceutical industry or governments so that diagnoses and treatments are improved.

Ten of the diseases on the list occur in Brazil. These are pathologies such as Chagas disease, dengue, leishmaniasis, leprosy and schistosomiasis.

“The main characteristics that unite these diseases are the lack of sufficient attention and the consequent lack of development of appropriate tools so that patients are adequately cared for”, says Sergio Sosa-Estani, regional director for Latin America at the Medicines for Diseases Initiative. Neglected (DNDI)

“And these tools do not exist or are insufficient because nobody prioritizes investment in their development, production and availability”, adds Sosa-Estani.

Data from the organization Doctors Without Borders (MSF) show that these diseases affect more than 1.7 billion people across the planet — many of them undiagnosed —, mainly in Latin American, African and Asian countries.

Every year, about 1.5 million people in the world contract at least one of these diseases, and they cause about 500,000 deaths annually.

Visibility to the problem

To give visibility to the problem and press for more investment in the sector, the WHO instituted January 30 as the World Day for Neglected Tropical Diseases – the date was celebrated for the first time in 2020.

The concern is pertinent. According to a systematic review published by the scientific journal The Lancet, of the first 850 new therapeutic products approved this century by regulatory agencies around the world, only 4% targeted such diseases – although, as the MSF survey highlights, these diseases account for 11% of the global burden of disease.

For Vitória Ramos, MSF’s manager of advocacy, institutional relations and humanitarian affairs, the problem is that, for many of these diseases, neither the diagnosis nor the treatment has evolved over time due to a lack of market interest.

Two examples of neglected diseases that occur a lot in Brazil, both Chagas’ disease and leprosy, are treated with drugs developed in the 1960s, according to MSF.

Data from the Ministry of Health indicate that Brazil had 312,000 new cases of leprosy in the last decade, ranking it as the second largest focus of the disease in the world — surpassed only by India.

In the case of Chagas disease, the estimate is that 1.9 million to 4.6 million Brazilians are affected, many of them without diagnosis. According to MSF, 6,000 people a year die from complications resulting from the disease.

Covid-19 as an example

The MSF organization works on the front lines to alleviate this problem. “We have already diagnosed more than 100 thousand people with Chagas disease in the country, and we have treated more than 10 thousand”, says Ramos. “But it is necessary to improve and count on the commitment of governments and investments to fight diseases like this. Many can even be eradicated. It is necessary to generate public policies that find people [com as doenças negligenciadas], diagnose them and then offer them suitable work.”

She cites the issue of the Covid-19 pandemic as an example of when political will and commitment from pharmaceutical companies make vaccines and medicines to be developed quickly.

On the other hand, he recalls that the period made life even more difficult for those who suffer from neglected diseases. “The system in Brazil was very compromised, with health units overloaded. Some of these diseases require chronic treatments or require constant visits to the doctor”, he notes.

“Neglected People”

Data from the Ministry of Health show, for example, that diagnoses of new cases of leprosy in the country fell by 35% from 2019 to 2020, the first year of the pandemic.

National coordinator of the Movement for the Reintegration of People Affected by Leprosy (Morhan), photographer Artur Custódio prefers to say that what exists are not neglected diseases, but “neglected people”.

“When we are talking about diseases with less interest in research investments and in the development of new drugs and new technologies, in general we are referring to poorer groups. There is a class cut. These diseases affect the most vulnerable populations more”, he emphasizes. .

“The important thing is to give visibility, to be able to pressure and mobilize”, he defends. On January 25th, a group of Morhan members held a public event in Rio to remember the importance of diagnosing the disease.

Meanwhile, civil society plays a role that governments should play. This is the case of DNDI, an organization created in 2003.

“When Doctors Without Borders won the Nobel Peace Prize [em 1999], they decided to make an investment with neglected populations in mind. Thanks to partnerships with a number of other institutions, in Brazil Fiocruz [Fundação Oswaldo Cruz], our initiative was created”, says Sosa-Estani.

He explains that the model is innovative precisely because it encourages partnerships to develop medicines. So far there have been nine. “And our projection is to have 25 by 2028”, he envisions.