Medical and Societal Treatment of Tuberculosis
"Malignant, repellent, appalling, elate on his death-reared throne; he gloats, in his hideous palace, O’er the world he claims his own", (Thaddeus A Browne, “The White Plague”).
Tuberculosis - an ancient enemy that has devastated mankind for thousands of years. Almost all cultures of the world are well familiar with it and have given it different names: yaksma (India), phthisis (Greek), consumptione (Latin) and chaky oncay (Incan). In later times it was known as consumption – a disease that ate a person from the inside out – and during the 19th and early 20th century it was known as the white plague. Other names include Scrofula, Pott's or Koch’s disease.
From time immemorial, tuberculosis has been synonymous with death and immorality. It was seen as the consequence of a sinful life, being cursed, related to sorcery or vampirism. Known to be fatal, treatments varied from the mundane to the bizarre. The Sushruta Samhita, written around 600 BCE, recommends that the disease be treated with breast milk, various meats, alcohol and rest. Hippocrates actually advised his medical students against treating it, because it was almost always deadly, and a dead patient was bad for business. Pliny the Elder, in Natural History, suggested "wolf's liver taken in thin wine, the lard of a sow that has been fed upon grass, or the flesh of a she-ass taken in broth".
In a country of well over a billion, a vast number of who are either near or below the poverty line, the idea of life in India can mean mere existence; food enough for the day, any water to drink, a place to sleep and a few clothes to cover up. Even for the huge middle classes, survival is the name of the game - only the standard of living has been raised. To be sick in such an existence would be a burden, but to contract tuberculosis is a considered a curse. Unfortunately, that is exactly what is the easiest to catch.
With almost one in every third person carrying the bacteria, tuberculosis is the leading communicable disease in India. Accounting for 20% of the global burden, India has the highest TB incidence in the world. There are over 1.8 million news cases every year (infected, but not having the disease), with about 0.8 being smear positive (having TB disease). It kills close to a 1,000 people EVERYDAY in India - almost 2 people every 3 minutes.
While pulmonary TB is the most common form of the illness, it can affect almost every part of the body, with the exception of hair and nails. It is prevalent in the age group of 15 – 50, the most productive age bracket, with an estimated economic impact of US$ 3 billion to the country. India also accounts for 25% of the global HIV/TB co-infection burden. More than 50% of people living with HIV have TB and more than 60% will die because of TB.
Without early diagnosis, proper and complete treatment, not only do patients remain sick and / or die, the disease itself mutates. Multi-Drug Resistant (MDR) tuberculosis is fast becoming a major crisis, but is mitigated by the fact that it is treatable. What is most alarming, though, is the advent of the virtually untreatable Extensively Drug Resistant (XDR) TB. While accurate statistics are not available, XDR cases have been confirmed in over 50 countries.
The sad part of the story is that tuberculosis is easily curable; and treatment, in fact, is provided free of cost in India. Under the WHO recommended DOTS program, a patient can be treated within 6-8 months. The national tuberculosis control program achieved 100% DOTS coverage of the country by 2006 - which means that treatment should be accessible to anyone anywhere. Yet, the statistics above tell a different story. So why is this?
Dheza Marie Aguilar’s comments in the Manila Bulletin Online are revealing, “When a person is diagnosed with tuberculosis or TB, s/he is 'marked' for life...shunned by society and at worst, ridiculed and left alone by his or her own family. More than the pain of the disease, the real agony of tuberculosis is its effect on the social life of a patient.” Equally pertinent are the words of Mother Teresa, “The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted.”
Misconceptions, myths, rejection, superstition, fear – all the ingredients of stigma – are the invisible (and sometimes not so invisible) barriers to treatment. With 100,000 women having to leave their marital homes, 300,000 children having to drop out of school, thousands unable to marry and scores out of work due to tuberculosis, it’s no wonder patients want to keep a low profile.
“…people are destroyed from lack of knowledge.”(Hosea 4:6, The Bible). There is no truer statement for TB. People are literally dying because they have no knowledge, or worse, they have whole lies and half truths. This is why it is so critical to have a wider involvement of society around tuberculosis. The battle is not going to be won merely by newer drugs or better diagnostics. Beyond doubt, these are essential developments but all they will give us are “acceptable” outcomes on an ever increasing pool of patients.
The tide will turn only when we have all of civil society engaged – political / community leaders, industry / private sector, faith based organizations, students, housewives, everyone. Without involvement of society at large to champion the cause, tuberculosis is a battle that cannot be won.
Advocacy then becomes the tipping point – and it’s not to be confused with just awareness (a key component of advocacy). Work needs to be done to get various groups engaged at all levels – policy, resources mobilization and service delivery. Advocacy, Communication and Social Mobilization (ACSM) is the new buzzword on the block and a much need one at that. To win this war, tuberculosis must be kept up, front and center.
The Advocacy to Control TB Internationally (ACTION Project) is an international partnership of advocates working to mobilize resources to treat and prevent the spread of tuberculosis. Its work centers around engaging political will, facilitating interaction between key stakeholders, empowering civil society to be tuberculosis champions in their spheres of influence and partnering with relevant organizations to ensure a TB-free world.
