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Alberto Colorado, a well-known “acTBist”, provides an overview of the situation of TB and the community response to this disease in Latin America. He claims that it is a dark reality and that, based on how global goals have been set, we will not be able to end this pandemic by 2030.

By: Francisco Olivares Antezana

Alberto Colorado (AC) is a Mexican medical doctor who currently lives in the United States and devotes his efforts to the response to TB in Latin America. He is part of the Americas TB Coalition, supports the Americas Parliamentary Front Against TB and is well-known in social media thanks to the group called “AcTBists”, which brings together leaders and people interested in collaborating with this type of work.

On the occasion of World TB Day, Corresponsales Clave (CC) interviewed this “AcTBist” to get a better look at the challenges civil society has to face with respect to a disease with “red flags” in several countries of the continent where civil society organizations play a major role in making sure that governments do their jobs–a role they play without any financial resources, but simply driven by altruism.

Alberto Colorado, Mexican medical doctor. He lives in the United States and is part of the Americas TB Coalition.

CC: Which are the main problems regarding this pandemic in Latin America?

AC: It depends whom you ask. On the one hand, there is the official reality, which is when governments present statistics according to their interests and mainly according to what I call “political stigma.” Countries do not want to be seen as having tuberculosis-related problems because these are the tip of the iceberg regarding human rights and health rights, which would imply that their diagnostic and treatment methods are not working. On the other hand, civil society describes the reality of people suffering from TB: they do not have information on the disease; there is social stigma linked to poverty; they do not want to go to health care centers because, when they do, they do not receive timely diagnosis; sometimes there are no medicines; doctors and nurses are insensitive … It all leads to a lack of trust.

CC: In this context, which countries have major problems?

AC: Out of the more than 274,000 cases estimated by the World Health Organization, most of them are concentrated in four or five countries in Latin America, which are Haiti, Peru, Brazil, Mexico and Bolivia, and even Colombia. However, these data are still manageable, as data collection systems are not good and several countries provide diagnosis estimates based on the use of bacilloscopy, which is an outdated method.

CC: Given that the response to TB is ingrained in governments and they do not offer civil society spaces to work in this field, what are the challenges civil society has to face?

AC: Tuberculosis is still seen as a biomedical problem. We have only recently started to talk about human rights and the different populations affected by TB: people living with HIV, people with diabetes, people deprived of liberty and health care workers, who are most at risk due to their vulnerability. In the United States, our indigenous populations are also totally neglected, and in the case of African-American people, actions aimed at them are not culturally sensitive.

Poster of the World TB Day campaign 2018.

TB is not a lung problem. Even though TB is the main cause of death for people with HIV, these two populations are not working together yet. Civil society is just starting to emerge. There are countries like Peru, Brazil and Bolivia where organizations grouping people with TB or TB survivors are being established. That is one of the main strengths of the Americas TB Coalition, a space where we have been able to bring them together to work jointly for the common good.

CC: How could these organizations help so that tuberculosis is no longer seen as a biomedical problem?

AC: Civil society is not going to replace governments and do their job of providing care services for their citizens, with education, good laboratories, medicines and trained and sensitive doctors … Civil society plays a major role in the supervision of this job and, on top of everything, there are not enough funds and support for civil society. For instance, it has to check that there are second-line medicines (such as bedaquiline and delamanid) for treating multidrug-resistant tuberculosis, soluble medicines for children or social assistance, which is usually considered as external to health departments, but, without food, treatment adherence is not possible.

CC: Without the support from governments or international funding, where do these organizations obtain resources from?

AC: Unfortunately, the work carried out by most communities is voluntary. Some received certain assistance from the Global Fund, but it was very limited. Governments do not provide structured support to work jointly with civil society. We all work with our organizations and do humanitarian work. We do it because our hearts tell us to support those who are suffering.

CC: How could this be redressed? Or is it that organizations do not see it as a priority?

AC: As you know, if you receive funds, everything depends on the objectives and goals established. You do need funding for activities with a larger scope which are not linked to social media channels. For instance, you need money for transport, for attending meetings … People have to pay out of their own pocket … I think it is important that both governments and the few international agencies which still support Latin America and are withdrawing from the continent provide [resources].

CC: Given this situation, how viable do you think it is to fulfill the goals established by the World Health Organization about reaching threshold values corresponding to the tuberculosis elimination phase?

AC: I think global organizations are very optimistic for what may happen, but when we go in situ and see that some countries do not even have sputum flasks or inputs for performing culture or do not use the latest diagnostic methods or do not have the newest medicines, we realize that there is still a long road to travel to be able to end tuberculosis. In Peru, some people die because the government cannot offer lung surgery since 2015. In Colombia, a young man died while waiting for new medicines due to a case of extremely drug-resistant tuberculosis. We are talking about a very dark scenario.

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