Weakest link in war against TB: Community participation

Around one third of the world population is estimated to be infected with the TB bacterium and is at risk of developing the disease. There were 8.8 million new cases of TB in 2010 and the disease killed a staggering 1.4 million people. Many more struggle with the disease which, apart from causing human suffering, slows down economic growth. The situation is said to be serious in Europe, alarming in Africa and worrisome in parts of Asia. And yet, the current TB drug treatment regimen is just too old, grossly inadequate, and unable to control the epidemic. There is just one vaccine available, which was discovered almost 100 years ago, and which provides limited protection.

Not only is there a dearth of effective and patient friendly medicines, there are discriminatory policies too in many countries, either by law or by society, which reduce access to healthcare services for the affected populations due to fear and mistrust. From the public health point of view, the consequences are catastrophic - lower case detection, increased infection rate, and more of drug resistant TB. The vulnerable tuberculosis population consists of women and girls (who account for more than 50% of our planet’s population and are still discriminated), injecting drug users in congregated settings, migrants/ immigrants, poor or malnourished people particularly children, among others. We all know that it is unethical to discriminate against TB patients or for that matter those suffering from any disease. This prevents access to healthcare and helps in spreading the disease rather than curbing it.

Dr Gilles Cesari, Regional Director at the International Union Against Tuberculosis and Lung Disease (The Union)'s office in Singapore, spoke to CNS at the recently concluded 42nd Union World Conference on Lung Health, Lille, France. Dr Cesari informs that "Transgenders, female sex workers and people living with HIV are refused access to care in some TB DOTS Centers in Bangladesh; 63 countries have some form of HIV (or TB) specific restriction to entry, stay and residence of immigrants; and 28 countries deport people once HIV+/TB status is known."

Dr Cesari feels that at the grassroots level, a lot has to be done to enable vulnerable populations to access proper TB treatment. He cites the example of "Singapore, which I thought was an ideal place to live in. But then I saw the sorry state of its discriminatory laws in public health. It heavily discriminates against migrants (who are legally staying in the country) as far as TB is concerned. As soon as they are diagnosed with TB, which they contracted in Singapore, they are immediately deported to their home country. This is not only sad from human rights point of view; it is catastrophic from a public health perspective too. These people obviously are afraid to go the healthcare centres for fear of reprisal. So they knowingly do not access treatment spreading the disease in their community. All this could be prevented only if they had a fearless access to standard treatment and care. Deportment does not solve the problem. In fact it increases it manifold. They end up infecting many more people before succumbing to the disease themselves. There is no way we can stop a disease by deporting patients."

What could be the reason for this sorry state of affairs? Well one important factor could be lack of active community participation. It was only a strong community involvement that forced governments, stakeholders, researchers to change the scenario in the field of HIV/AIDS during the last 25 years. There have been new drugs, new tools, and new guidelines/protocols to combat this once dreaded disease—all because of intense lobbying by the community. This is somehow missing in the field of TB. We do have the Patients' Charter for Tuberculosis Care (a rights and responsibilities framework for people with TB). But it is rarely shared with patients, and even many doctors may not be aware of it.

According to Dr Cesari, "One reason for this could be that that as HIV is a chronic disease for life, there is more group participation of people living with HIV to fight for their rights. Also HIV earlier (in the early 80s) affected more of men who have sex with men (MSMs), who were at that time already fighting for their sexual rights. So that helped a lot. But TB gets cured. So once people get cured they tend to forget about it. But in HIV you can never forget, for it is never the past. So it is important for ex-TB patients to become activists and help in overcoming stigma at the community and government level. We also need better diagnostic tools for TB. Now HIV can be diagnosed in just 5 minutes with the latest tools we have. Why not in TB? Yes I agree that during the last decade, lot more research has happened, including operational research in the field of TB. There are many good people having many good ideas to combat TB. We only need to prioritise these efforts and the community has to demand it as they did in HIV."

Dr Nils Billo, Executive Director, The Union, feels that "Community Participation is not very good in TB as it affects mainly the poor people and poor people do not always have a voice. HIV/AIDS affected many people in the industrialized countries which have a lot of influence. And they have pushed very hard and have been able to build up a very big community movement. Unfortunately, we have not been able to do that in TB, and this has reflected in the fact that less attention is being given to TB by governments and donors."

In an interview given exclusively to CNS, Dr Lucica Ditiu, Executive Secretary of the Stop TB Partnership, emphasizes upon the need to understand, raise and address the issue of stigma in TB associated with vulnerable populations, especially women and children. According to her, "It is important to make women part of the solution and involve and empower them. Even when we design programs to address and reduce stigma we have to make sure that our partners who are contributing to it are women. We have to create an international movement addressing women and children which will give the chance for countries to raise the issue at their level. You have to give a bit of the power globally to them, and then it can be raised at country level. I come from the Balkans and there TB stigma is a big issue. In my country in Romania, my parents even if they hear me coughing, ask me to go inside the house because they are scared that as people know I am working in TB, so they may think I have TB. So in most parts of the world, there is huge stigma for women, and this prevents them from going to a doctor and to seek treatment. So women need to have a voice in the National TB Programs."

Dr Ditiu concedes that "Community participation in TB is less because traditionally, worldwide TB was dealt by public health sectors and not by NGOs. Unlike people living with HIV/AIDS, TB patients are sick when they are sick, and then they go out. Because of the stigma attached with this infectious disease, a lot of people say - Okay I had it, I got cured and now I don’t even want to remember about it anymore. So it is difficult to have a patient beyond the 6 months of treatment to get engaged. Also, National TB Programs are pretty vertical and are not too keen in linking and in reaching out to the affected populations. That is why a lot of TB care is done in a very medical way, without involving outside partners; and the civil society, particularly the private sector remain non traditional partners. But we should remember that TB is not about individual patients. It is a global health problem and has to be dealt with accordingly."

Rights are rarely handed over to the lawful recipients on a platter. The same is true of tuberculosis. So unless TB patients and communities raise a storm of voices to demand their rights, access to proper and timely treatment/care may remain a far dream for many of them. One of the ways can be to implement the Patients' Charter for TB Care in letter and spirit at all levels of TB programmes so that people with TB can be empowered and use their Charter for TB Care to demand and access International Standards for TB Care, both of which are integral components of the Global Stop TB Strategy.

Shobha Shukla - CNS
(The author is the Managing Editor of Citizen News Service (CNS). She is a J2J Fellow of National Press Foundation (NPF) USA. She is currently writing from the 42nd Union World Conference on Lung Health, Lille, France. She has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. Email: shobha@citizen-news.org, website: http://www.citizen-news.org)