Tuberculosis spells death of dreams

Maya Dahlan and Santi W.E. Soekanto, Contributors, Jakarta

People say the poor are still rich if they can still dream. For poor, tuberculosis (TB) patients, however, even dreams are often a luxury -- the disease that so many people identify as the scourge of the poor not only kills them but devastates many opportunities to a life where people can dream about the future.

Take Adrian, for example. The 24-year-old school dropout practically now lives at the TB ward of Persahabatan Hospital, East Jakarta. A restless presence in the ward, Adrian often wanders here and there to various corners "seeking fresh air" and allaying his constricting chest.

"I started to feel sickly when I was in junior high school. In fact, I suspected that I would be this sick because even then I always experienced difficulty breathing, was feverish and coughed," he said.

"I suffered, my school work suffered but thank God I managed to enter senior high school, but the second year there proved to be the peak of my suffering," he said. Adrian was hospitalized, but not one of his friends was allowed to visit him.

"I was devastated; feelings of anger, shame and sadness were all there. I wanted to die."

After seven months of treatment, Adrian recovered sufficiently to return to school, where his friends did not even want to sit next to him.

"They all stared at me with disgust and maybe fear. I tried not to care but then I had this one long bout of coughing, and the classroom was deserted."

Adrian stopped going to school then, but his suffering has yet to end because he continues to suffer health problems. "Once I had this dream of becoming an engineer. Now I no longer have any dreams. All I want is to get well again," he said.

Freddy Panausaran Manulang is 13 and an elementary school student at Pondok Kopi, East Jakarta. All he dreams about now is getting well again and being able to play football.

He began to have "chest pains" in second grade, and bouts of high fever and diarrhea.

"I was sick so often, I flunked two years in a row. I would have been in my second year at junior high if not for this disease," said the third child of Martin, a car repair man, and Tina.

When interviewed in the hospital, Freddy was waiting for his father, who was out to buy food for him. But Freddy often lets food go to waste. "I just don't feel like eating. Maybe that's why I am so thin -- I don't think it is because of my sickness," Freddy said of his small, hunched frame.

"I get tired too easily ... the only thing I want, should I be cured of this disease, is to play football with my friends," Freddy said.

Another TB patient, Nurhayati, a 41-year-old mother of four, said, "What's killing me is not the TB, but all these feelings of fear and shame because I have this disease. Although I have to ask some relatives for help with the hospital bills, I know that you are supposed to stay away from people with TB because it's contagious."

Nurhayati began to have trouble breathing and coughing three years earlier, losing weight considerably and was later hospitalized. Following treatment, doctors told her she was "cured" but should still be on guard lest the disease come back. Indeed, it recurred, and Nurhayati found herself again battling the disease and the bills.

In between long fits of coughing, Nurhayati said her husband, a security guard at a factory in Cakung, East Jakarta, makes Rp 80,000 per week while their two eldest children are unemployed and try to help out by busking on buses.

One incident helped her rebuild her confidence -- a neighbor helpfully taught her how to process certificates of entitlement to free medical services the government provides for the poor.

"This neighbor even took me to an arisan (gathering) and was not reluctant to eat and drink alongside me."

Another source of worry, however, was her youngest child, a five-year-old girl who now has displayed signs of breathing difficulty, as Nurhayati once experienced. "Please God, I don't want any of my children to have the same disease that I have."

Take a breath: In the time between your inhaling and exhaling, a person somewhere has just become infected with tuberculosis. Count to 10: As soon as you finish, a person somewhere in the world has just died of the disease.

It was once declared by the World Health Organization (WHO) as a global emergency because approximately eight million people become infected every year, with a death toll of three million.

Indonesia ranks third among countries with the highest TB incidence. Every year, some 600,000 Indonesians on average become infected with TB, while some 140,000 die of what is actually a preventable death. Indeed, TB is the third-most frequent cause of mortality in the country.

Sadly, less than 30 percent of all cases of TB infection have ever been detected. What is even more unfortunate is that 75 percent of all patients come from among the poor, who have less access to good hygiene and other healthy housing facilities, to health services, and who smoke. These people are, of course, not among the Indonesians who spend approximately US$300 million on health services abroad because health services are poor at home, as one health official recently projected.

Nurhayati, Adrian and Freddy are among the poor whose dreams have been killed by TB, a disease that is known to thrive in conditions of poverty and overcrowding. TB affects those who are malnourished and with low immunity -- which is why it forms a deadly, "unholy partnership" with HIV.

The UN recently estimated the impact of TB in broad terms and came up with a deadly reading: The average loss of income is about 20 percent to 30 percent per patient per year; the average loss of a family's earning capacity after one of its members dies from TB is about 15 years. These losses could amount to almost one percent of GDP, the same margin by which developing countries are trying to escape the poverty trap. The impact of the loss is obvious.

At the family and community level, this translates into discontinued education, childhood marriages, loss of skills, poor job opportunities, more child workers, inadequate child care, mortality due to other opportunistic infections, stigma and family breakups, to name but a few.

It also means the death of dreams.