Liseane Morosini (Revista Radis)
Dentist Mileni Romero performed community service at a health center for low-income people and worked in the care of political prisoners at a military hospital in Venezuela. At the end of 2016, constant coughing and weakness forced her to go to several physicians in search of a diagnosis, which was given in February 2017. Mileni had tuberculosis, and at a moment's notice, the physician became patient. "The medical treatment is very aggressive, and I had strong reactions. The way is not easy," she said when sharing her experience at the opening of the 48th Union World Conference on Lung Health, which took place in Guadalajara, Mexico, in October 2017. In front of an audience of researchers, politicians and representatives of organizations, Mileni – who, after being cured, became an activist – called for more attention from governments and investment in research to eliminate the disease. "You have to look at people and do something urgent. We need an urgent response. The main human right is the right to life," she warned.
It will not only be one but several methods combined with strategies that will alleviate the suffering of millions of people, the researchers said. At the opening of the conference José Luís Castro, director of the Union, said the persistence of tuberculosis is "unacceptable". "We know that if we want to eliminate the disease by the year 2030, we need new scientific resources that will increase our ability to reach, diagnose and treat people with tuberculosis," he said. On the other hand, Paula Fujiwara, scientific director of the entity, stressed the importance of scientific sharing to increase research. "If we do not develop new instruments, then forget about it; it is not going to happen", she said during a meeting with the press.
Associated with poverty and extreme poverty, tuberculosis affects more people living in lower social classes. Now the researchers note that it is already advancing on other layers of the population. Information from the World Health Organization (WHO) shows that more than 10 million new TB cases were reported in 2015, and that 1.5 million people died. Data show that, for the most part, tuberculosis kills residents of developing countries. The alarming number of victims has already left behind the deaths from HIV/AIDS and reflects the seriousness of the problem. Not surprisingly, during the conference, the Union representatives placed tuberculosis among the "top ten global killers".
The international entity points out that undetected and antibiotic-resistant cases are at the heart of the problem. When treatment is discontinued, the bacterium is not eliminated and the body stops responding to the medication. According to information released at the conference, 40% of patients are not even found. For these, a single route is drawn in the future: either they will die for lack of treatment or will continue to transmit the disease, in an endless chain.
Tuberculosis can be prevented and cured when treated, and adding efforts to stop it was the strong recommendation to participants. The Brazilian government did not send representatives to the most important meeting in the area, which brought together researchers and activists from around the world. In lectures and plenary sessions, research and technological developments on detection, diagnosis, TB-HIV co-infection, monitoring and follow-up of drug-resistant tuberculosis cases were explained. One of the innovations presented was Wirelessly Observed Therapy (WOT) that monitors tablet ingestion through a sensor and cell phone and internet networks.
Currently, in Directly Observed Treatment (DOT) it is the health care professional who observes the patient to ingest the medications. WOT allows the remote monitoring and does not require the presence of the patient in the health unit. The hope is that this mechanism will help to reduce dropout rates, which reach 10% in Brazil. Sara Browne, a researcher at the University of California, said the device is 54% more efficient than direct observation. For children, there was the presentation of a drug with a more pleasant taste. And in addition, there is the prospect of new markers that allow testing on materials other than sputum.
The conference also opened space for health issues related to tobacco use and air pollution - considered risk factors for the development of tuberculosis. Neighboring Brazil, Uruguay was remembered as a model of struggle for countries that fight against tobacco. That is because, according to the Union, in 2016 the American tobacco company Philip Morris had to pay US$ 7 million when questioning in court the country's anti-tobacco policies. "The fight is against tuberculosis and for tobacco control," the researchers said. According to WHO information, between 13 and 20% of tuberculosis cases worldwide can be attributed to smoking.
Draurio Barreira, technical manager of UNITAID, said treatment is difficult and requires therapeutic schemes. "No one treats tuberculosis with just one drug." According to him, WHO information for 2017 points out that only one in four patients is cured worldwide. "The others will die unfortunately, but before dying they will transmit the already resistant tuberculosis to their contacts." Barreira emphasizes that, in one year, an untreated patient transmits the disease to an average of 15 people. In addition, he noted that in sensitive TB, of the first level, the chance of cure is 90% if the person undergoes the whole treatment. "In multi-drug-resistant tuberculosis (MDR-TB), the bacillus is resistant at least to isoniazid and rifampicin, and the chance of cure is 50%. In extensively drug-resistant tuberculosis (XDR TB), the person does not respond to three injectable drugs, and the chance of cure is 28%. To me this is a personal tragedy." Treatment can take from six months to a year and a half, at a minimum. In an interview, the researcher highlighted the importance of Brazil offering the whole treatment by SUS. "The single protocol adopted by the public system is the best and makes all the difference in the care of sick people," he said.
Fabio Moherdaui, a national consultant for tuberculosis at the Pan American Health Organization (PAHO), noted that Brazil has 35% of all tuberculosis cases in the Americas. "In the last 15 years there has been a 2% drop in new cases every year. There are almost 70 thousand cases." Although he emphasizes that there is a chance of control, he still considers it a high number. Despite the numbers, it is with Peru that PAHO is concerned, not Brazil, Fabio assured. According to the physician, Peru is a focus of expansion of resistant tuberculosis within the Americas, with approximately 20% of cases. "Our number of resistance cases reaches 1.3%. We are in a more comfortable situation," he notes.
But he understands that this should not be a reason for the Brazilian effort to fight the disease to be less. He recalls that on a WHO list with 48 priority countries for tuberculosis control, Brazil ranks 20th in the classification of disease burden, and 19th in TB/HIV co-infection. "There is a lot still to do," he said.
The call for more investment in new and ongoing treatments has also been made by humanitarian organizations such as Médecins Sans Frontières (MSF), which pointed out that people with multidrug-resistant tuberculosis (MDR-TB) do not receive bedaquiline and delamanid, two of the most recently developed drugs. MSF noted that, although they are considered "new", these drugs were the only ones developed against the disease in 50 years. For the organization, this gap already signals the obscurity of tuberculosis on the list of priorities of drug development around the world.
According to MSF, the substances have received authorization to be marketed in 2012 and 2014, respectively, and represent "a potential salvation for people affected by the most drug-resistant forms of tuberculosis." However, the organization estimated that less than 5% of those who could benefit from these new substances had access to them in 2016. MSF estimates that the current standard treatment for drug-resistant TB requires people to take about 15 thousand pills in two years, causing serious and debilitating side effects and curing an average of only one in two people. "The two new and promising drugs have been brought to the market with high hopes of being the pillars of a much improved treatment for drug-resistant tuberculosis," MSF said in a presentation.
Discovered in 1882, the bacterium Mycobacterium tuberculosis and better known as Koch's bacillus mainly affects the lungs and is transmitted very simply: it suffices for the sick person to cough, speak or sneeze to expel small particles with bacilli. So, it is easily contagious, especially in crowded environments. According to the Epidemiological Bulletin with data from 2016 and published in May 2017, the incidence of tuberculosis in Brazil is 34 cases per 100 thousand inhabitants. The risk of becoming ill varies from 10.5/100 thousand inhabitants in the Brasília, to 67.2/100 thousand inhabitants in Amazonas, in Northern Brazil. The states of Rio de Janeiro (5/100 thousand inhabitants), Pernambuco (4.5/100 thousand inhabitants), Amazonas (3.2/100 thousand inhabitants), and Pará (2.6/100 thousand inhabitants) presented the greatest risks for death from tuberculosis.
Behind the numbers are prisoners, a large contingent of people living on the streets, people with HIV/AIDS, and indigenous peoples. These are the vulnerable groups that are most likely to get the disease. Data from the Ministry of Health indicate that, among inmates, the incidence reaches 932 occurrences in 100 thousand inhabitants, the contamination of street population is 70 times higher than the national average, the incidence of tuberculosis among indigenous people is 10 times higher than that found in the Brazilian population; TB/HIV coinfection rate reaches 9.9% while lethality rate reaches 6%. In Brazil, tuberculosis is the leading cause of death among infectious diseases in people with HIV/AIDS, and the death rate is 20%. In March 2017, the Ministry of Health launched the National Plan to End Tuberculosis, with actions to reduce the incidence of the disease in the population. The goal is to reach less than ten cases per 100 thousand inhabitants by 2035.
"Anyone who has a cough for two or three weeks should seek a health facility to take the test. There is no need to go to a physician," pulmonologist Carlos Tietboehl Filho says, responsible for the Committee on Respiratory, Occupational and Environmental Diseases of the Brazilian Society of Pulmonology and Phthisiology." The person should tell the health care professional that she/he is coughing and will receive the pot for sputum collection. Usually two or three samples are taken and should be delivered the next day to the health unit," he says.
According to Tietboehl Filho, SUS is structured to receive patients, but the demand for research is much lower. "There is a structure to attract these patients, but people do not go to the units for many reasons, among them, the lack of knowledge of the disease" he notes. Another problem is the delay in diagnosis. "Often the disease is interpreted as an acute respiratory infection or chronic bronchitis. It is important that health care professionals stay alert. Basic care must also have the means to be able to make the correct diagnosis and investigate the contacts of the patient," he recommended.
Also present at the conference, Liandro Lindner, journalist and consultant in communication and health, said that the focus of public health policies is still very restricted. "The policy is much localized. It addresses one side only, which is to give medication," he said. "Those who get tuberculosis have mental health problems, live on the streets, and are alcohol addicts or drug users. This is the impaired population. To me the solution is not just to offer the medication, but to bring these people back into the job market and into social life to end prejudice and stigma.
To eliminate tuberculosis, WHO aligned its commitments to the Sustainable Development Goals (SDGs) with a view of reducing deaths by 95% and new cases by 90% by 2035 compared to 2015. In addition, WHO also wants to zero the cost of tuberculosis to affected families, which it considers "catastrophic".
The End TB Strategy was approved in 2014 during the World Health Assembly and brings a new approach to action: instead of just stopping the disease (Stop TB), the goal is to eliminate the disease through the joint use of medical and social interventions. The WHO reinforces that in achieving the Millennium Development Goals (MDGs), which compared the year 2015 to 1990, 43 million lives that would be taken by tuberculosis were saved.
The strategy was put into operation by the Global Plan to End Tuberculosis 2016-2020, which sets the amount to be invested to reduce the disease in the world. "The falling numbers of TB will not be improved if the Global Plan against Tuberculosis is not followed," Paula Fujiwara said, scientific director of the Union. The physician pointed out that it will be necessary to invest 65 million dollars by 2020 to prevent 45 million new infections, implement 29 million treatments, and save 10 million lives. " Not investing generates an eightfold higher cost", she said.
Carlos Basília, a psychologist and coordinator of Observatório Tuberculose Brasil, an observatory for the disease in the country, says the situation is dramatic. "States and municipalities are lacking resources and minimal structures to deal with the challenge of controlling TB by 2030." To him, new TB control strategies require more investment and public policy is moving in the opposite direction. "There is the dismantling of SUS with the investment freeze for 20 years, and of Unified Social Assistance System (SUAS). If SUS is underfunded, fragile and limited in its action, I project that in 10 years Brazil will have an increase in the disease." In December 2016, the indicators of tuberculosis were removed from the list of health care monitored by SUS, and according to Carlos, it is from it that the federal government defines the transfer of money. To him, in times of budget squeeze, the manager will use the small amount of resources in areas that he/she considers priority. "Diseases historically determined by poverty and neglected will be penalized," he estimates.
*The reporter was selected to participate in the workshop “Effective use of data in public health journalism” and covered the conference at the invitation of Vital Strategies (VS), a program of Bloomberg Data for Health Initiative.
**Originally published in Revista Radis.