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 with 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
Asian Tribune
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