According to the World Health Organization, about a billion people in the world – one sixth of all people on the planet – suffer from the so-called “forgotten diseases” – diseases that the pharmaceutical industry is not interested in research.
Cause? “They are related to poverty, they have little interest in the market because they do not provide a lucrative income,” explains Sinval Brandao, researcher at Fiocruz and president of the Brazilian Society of Tropical Medicine (SBMT).
WHO classifies 17 pathologies as neglected tropical diseases. They differ from each other, but they are united by the fact that they cover mainly low-income or poor people in poor places and in developing countries.
Some of the pathologies have been known for centuries, explains Ethel Maciel, an epidemiologist at the Espiritu Santo Federal University (UFES).
You have already studied some of them at school: tenaz, leprosy, Chagas disease, schistosomiasis, sleeping sickness, trachoma, onchocerciasis, lymphatic filariasis, and others.
Many living in large urban centers in the First World have the (erroneous) impression that they are diseases of the past that have been eradicated. After all, in huge parts of the world where living conditions and hygiene have improved, they are no longer a problem.
But they are still present mainly in poor regions of the world, in remote rural areas, on favelas and in urban areas without sanitation, including (and in large numbers) in Brazil.
“Brazil accounted for 70 percent of all global deaths from Chagas disease in 2017, representing 93 percent of new leprosy and 96 percent of visceral leishmaniasis on the continent, and these are just a few of them,” says Jardel Katz. manager of research and development at DNDI (Drug Initiative for Neglected Diseases).
If so many people are affected, why not talk about these diseases? They are silent, says WHO, "because people affected or at risk have little political voice."
“Sometimes they get attention when they leave the chain of poor and poor places, where they are usually endemic and reach the middle class of the rich regions,” says Ethel Maciel. "This is the case, for example, with dengue."
Some organizations find a large group of diseases in the abandoned list. The G-Finder, in its annual report on neglected diseases, including tuberculosis and malaria, lists 33 diseases in its list. The project is organized by Policy Cures Research, a research center that seeks to improve the health of the world's poorest people and is funded by the Bill and Melinda Gates Foundation.
According to DNDI's Jardel Katz, all 33 diseases considered by the G-Finder are present in Brazil to a greater or lesser extent, depending on the region.
In 2008, the Ministry of Health identified seven neglected diseases as priorities for the country, based on data on its impact in Brazil: dengue, Chagas disease, leishmaniasis, leprosy, malaria, schistosomiasis and tuberculosis.
The problem is that in an area so dependent on public investment, government spending on research and development is declining. According to a recently published G-Finder report, the government cut funding for research on neglected diseases by 42% between 2016 and 2017.
According to Katz, the lack of interest in the pharmaceutical industry leads to the fact that these diseases have very old treatment methods with limitations, low efficiency and adverse reactions.
For example, one of the main ways to treat leishmaniasis is a substance called antimonate, which kills the simplest ones that cause infection.
“This is a treatment that is over a hundred years old, and it is very toxic. One of them is being treated and may have heart or kidney problems, ”explains epidemiologist Guilherme Werneck, a doctor of public health from Harvard and a professor at the State University of Rio de Janeiro. (Uerj).
“There is another remedy, liposomal amphotericin B, but it is very expensive and rather toxic,” says Verneck.
Ethel Maciel explains that the problem lies not only in treatment, but also in prevention and diagnosis.
"In the fight against money fever, the way to fight carriers (mosquitoes that transmit the virus) has remained unchanged since the 1980s in most parts of the country," she says. In the case of dengue fever, there is still no special medicine and there is only one vaccine that has low efficacy.
Research and development
“As for these diseases, it is the public sector that finances more research, and this leads to important breakthroughs. But in matters of innovation and treatment, partnership with the private sector is important, ”says Werneck.
This is because when it comes to advances in health in general, universities and government agencies usually do most of the so-called basic research (studying causal agents and methods of dealing with them), explains Jadel Katz.
The study on the creation and application of remedies properly ends with a private initiative that has more money and structure – besides the economic interest in it. “They will take care of this step when there are regulatory issues, clinical trials that require the participation of patients, money,” says Katz.
In addition, there is a third stage, production, which requires a production infrastructure.
However, in the case of neglected diseases, almost all research and development is conducted by the public sector or non-profit organizations, mainly foreign ones.
“This is an extremely dependent area of public investment,” Sinval Brandão explains.
But even if the public sector and academia invest in research, promotion is much more difficult without the infrastructure of the industry, especially in the creation of treatment methods and the production of medicines.
In Brazil, government agencies, such as the Fiocruz Farmanguinhos pharmaceutical laboratory, do this work, but they are still few and the level of production cannot be compared to the level of private initiative.
“Since this is not a pure business, you must have development alternatives,” says Katz. “Attracting partners to talk, both in the government and in basic science, as well as in thinking about the presence of an industrial partner. You must have different partners who dominate at different stages of production. ”
In Brazil, there are serious concerns about declining public investment in these diseases.
According to the G-Finder investment and research (R & D) report on neglected diseases, in recent years, investment in Brazil has declined significantly, despite growth in the world where it reached its highest level in 2017.
According to a survey published last week, the total investment in this region in Brazil in 2017 amounted to 29 million rubles, which is 42% less than in 2016, which led Brazil out of the list of the twelve world's largest creditors.
“We directly feel this budget cuts,” says Sinval Brandao of SBMT. "The reduction in investment that has already been felt in recent years, in 2017 and 2018, was much higher, interrupting projects and closing laboratories."
According to the report, in the period from 2016 to 2017, the reduction in government funding was due to the government spending ceiling, which led to a reduction by two funding agencies: the National Development Bank (BNDES), which reduced R $ 15 million investment; and the São Paulo State Research Support Foundation (FAPESP), which has cut 14 million rubles.
“This overall reduction is extremely significant in an area that has so little interest in the private sector,” says Brandao.
This affected almost all neglected diseases, which the Brazilian Ministry of Health considers to be priorities.
Investment in malaria research fell by 15%. With leishmaniasis, a decrease in funds was 63%. For tuberculosis, the reduction was 45%.
For Chagas disease – a problem for which Brazil was the second largest research financier for five years – a reduction of 74%.
Only two diseases had an increase in investment. One of them was dengue fever, which grew by 41%.
Another was schistosomiasis, which increased significantly from 500,000 rubles. In 2016, up to 2.8 million rubles. In 2017, an increase of 460%. According to the Ministry of Health, about 1.5 million people live in areas at risk of contracting the disease.
What does the government say
Claiming spending ceilings in 2016, the government has repeatedly stated that the budget ceiling will not affect health care and education – several lawyers, including ministers Enrique Meirelles (who worked in the Ministry of Finance) and Dego Oliveira (Planning), pointed this out.
Responding to a question from BBC News Brazil, the ministry of planning said that this should be the ministry of health. “The money leaves the agency’s budget, it decides where and how to spend it,” the ministry said. note.
The Ministry of Health says its science and technology department (Decit) does not reduce neglected diseases and supports research by working with government agencies such as CNPq and Finep, but does not respond to cuts made by funding agencies.
The ministry also states that Brazil has “a lot of the burden of noncommunicable diseases, in addition to infectious and neglected diseases.”
“For example, in 2016 and 2017, for example, in countries where there are not enough resources, it is necessary to allocate more or less resources for specific diseases. Zika's state of emergency, there was more investment in research related to mosquitoes Aedes aegypti"
The folder highlights the data from the G-Finder report, indicating that Decit is one of the largest sponsors of research on the control of mosquitoes in 2017. It also states that other areas of the Ministry of Health and the federal government "fund research and are not covered in the report," but did not specify exactly what diseases and how much was invested.
However, the ministry provided a list of measures to combat neglected diseases that are not related to research and development (and, therefore, are not included in the G-Finder report), such as “additional expenses in excess of 10 million rubles to combat Malaria in the States with the Highest Case Cases. "
“With regard to leprosy, the Ministry of Health annually campaigns to inform the public about signs of disease, stimulate demand for medical services and mobilize health workers to actively search for cases, which contributes to early diagnosis, timely treatment and prevention of disability,” the ministry said.
The authority also highlighted the National Plan to Control Tuberculosis as a Public Health Problem, launched last year, and “joint actions with state and municipal health departments to combat leishmaniasis” in addition to the free diagnosis and treatment offered by SUS for diseases.
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