Back in the 1970s, I was a medical student ready to take on the world. We had a student exchange program, where students from across the world would come to India to visit and learn. One year, there was a group of young doctors from the UK who were excited to be somewhere they could observe ‘rare diseases.’ Seeing the packed hospitals on rounds, they eagerly asked the Professor of Internal Medicine, “May we see a patient with tuberculosis?” The Professor, uncertain of their excitement, replied frankly, “Of course. We don’t just have one, we have wards and wards full!” Tuberculosis (TB) – the infectious disease that primarily targets the lungs - was, and continues to be, anything but a rare disease in India.
As a young doctor, this struck a chord. Did they not have TB in the UK? Is it such a rare disease that British doctors have to travel far and wide to see a single case? And yet we, in India, have ‘wards and wards full?’ How could that be?
The next day, I made a trip to the TB department. I found that ‘wards and wards’ was an understatement. The outpatient rooms were a tumult of noise and confusion, with a few harried looking doctors trying desperately to cope with the hundreds of patients. Every bed was occupied, and between the rows of beds, patients were lying on pallets on the floor. With the ward filled to capacity, there were many more who simply waited for admission.
Over the following decades, I witnessed the scourge that is TB that not only isolates those suffering with the disease, but devastates families. India holds a quarter of the world’s TB burden, with two million new cases annually and half a million deaths. India’s numbers are twice as high as second ranking China. It is a far bigger killer than malaria, HIV/AIDS, and all other infectious diseases combined. It is known to inflict terrible physical and mental suffering on patients and families.
What is more, the myths surrounding the disease make it more of a killer than the symptoms. People overwhelmingly believe TB is incurable and that the drugs used to treat the disease cause more harm than good. Rumors of TB-caused impotence or sterility, contraction through blood, or even from shaking hands, abound. This stigma leads to families and communities rejecting TB patients. Fear of ostracism compels many patients to hide their symptoms and not pursue proper treatment; a key problem in trying to rid India of the disease. Young girls, shunned by society, are unable to find husbands, and wives are thrown out by their husbands. Mothers, desperate to cure their children, whisper to doctors, “Please help me, I don’t want anyone to know that my child has TB. I will lose my home and my job. I don’t have food to eat. I cannot work anymore. I cannot feed my children.”
This stigma makes TB far more than a disease, but socio-economic problem as well. The poor loose approximately US$300 million dollars per year in lost wages, and the indirect cost to the Indian economy is US$23 billion per year. One hundred thousand women are thrown out of their families each year, and 300,000 children are forced to leave school.
Faced with these seemingly insurmountable statistics, Sandeep and I incorporated Operation ASHA to have an impact on this one critical issue. We both knew - after witnessing the terrible effect this disease had on our country, on our community – that we had to focus on TB. Whatever the difficulties may be, we would make TB a rare disease in India.
TB is an infectious bacterial infection that primarily attacks the lungs, but is known to also spread to other organs. The disease is spread by coughing and other respiratory functions and is highly infectious when active. While incidence of the disease is rare in developed countries, it remains high in low and middle income countries. The international community has made great strides in eliminating the disease but it has proven more difficult in recent decades as strains of drug resistant TB have emerged.
Dr. Shelly Batra is the Founder and President of Operation ASHA, a health services delivery organization that aims to expand access to disadvantaged communities worldwide. She writes about the inspiration behind developing Operation ASHA and helping those most in need get access to crucial health services.