MANILA, Philippines – Dr Maria Tarcela Gler looked out over the room of revellers – most of them her multidrug-resistant TB (MDR-TB) patients. More than 80 were celebrating Christmas, playing games, singing and enjoying a holiday lunch. These were her “smear-negative” patients – no longer infectious after weeks or months of treatment.
For Gler, this was her work in full view – a range of outcomes, mostly positive ones, but not all.
In the middle of the open room, five stories up in a downtown building, one of her patients, a skinny 14-year-old girl, Charlene Laguinday, was handing out plates of food. She had been doing well on her drug therapy, and her fellow patients took to her as if she were their little sister.
Next to Gler stood Catherine Del Rosario, a 27-year-old interior designer who had TB meningitis. Against Gler’s recommendation, she stopped taking the powerful medications after 15 months – just three months before her scheduled stop – because she said she couldn’t take it anymore.
And in the back of the room, leaning against a wall of glass that looked out at the skyscrapers of central Manila, was an elegant woman dressed in black. Tears ran down her face. She was Delia Yao. She never had TB. But her daughter did.
“Her daughter died a few months ago,” Gler said quietly. “The patients are very close to her, and they were very close to her daughter. Her daughter was just 16. She had a very bad TB infection. It got to a point where I didn’t know what to do anymore. We did everything, but the disease just kept coming back.”
Someone called Gler to the front. Several patients surrounded Yao, their hands on her shoulders and arms. The mother brushed away her tears, but they kept coming, a stream she couldn’t stop.
Later, Gler stopped Yao outside the room. “How are you doing?” the doctor asked.
Yao told her she felt she had to come; the community of patients meant the world to her daughter, Dianne Peebles. “I wanted to see everybody – I wanted to remember what was her life,” Yao said.
In the Philippines, such bonds are common among MDR-TB patients, relatives and health-care workers. They are natural outcomes from using a community-based model to try to stem the transmission of the deadly infection.
This approach means most of the patients never go to a hospital; they are outpatients, cared for at their homes, with detailed instructions, and masks, to protect others from infection. It means the patients arrive six days a week (Sunday is their holiday) at drug-distribution points – sometimes outside under tents and next to hospitals – to receive their medication. And it means they get to know each other, and then start to care for one another.
The community-based model, which is being used in varying degrees in other places such as Peru, was built atop a system in disarray. In the late 1990s, most TB patients avoided the free-of-charge public health system and used private doctors. Fearing that this mishmash of care strategies would generate huge problems, the Government took a firm step to strengthen its national TB control programme, including entering into partnership with the Tropical Disease Foundation (TDF) and other private groups. It was based on DOTS [the basic package that underpins the Stop TB Strategy]. In five years, the national programme had expanded DOTS across the country. In 10 years, it had overseen training of 5000 private doctors to correctly administer DOTS.
But it didn’t stamp out drug-resistant TB: for previously treated patients, fewer than half were cured, and many died. Further tests revealed those who failed treatment had MDR-TB; officials realized they had an epidemic of these cases. TDF, with the Government’s blessing, applied to the Green Light Committee – an initiative of the World Health Organization (WHO) – for enough second-line medication to treat 200 MDR-TB patients. The committee made the Philippines its first approved project.
The start of a MDR-TB treatment programme was extraordinarily difficult. Money was scarce; for several years, TDF paid for the drugs through fund-raising. But an infusion of funding from the Global Fund to Fight AIDS, Tuberculosis and Malaria, starting in 2003, helped substantially expand treatment coverage. By the end of 2008, the MDR-TB project had treated 1316 patients in all.
Gler, known to her friends as Maricelle, has treated several hundred of them. The 40-year-old doctor, once a serious mountain climber who had more recently started scuba diving – both outdoor escape valves – didn’t come to her work through traditional avenues. She first worked in rural areas helping the poor, joining development programmes in far-away islands during her pre-med studies at the University of the Philippines and later before her hospital residency.
A fellowship training in infectious diseases had deepened her interest in public health. In 2005, she joined TDF as a clinic physician and was later appointed head of its MDR-TB clinic in the central part of Manila – first housed inside the Makati Medical Center and then across the street from the hospital in an open-air section on the first floor of TDF’s new building. “The work is difficult, but it’s also very rewarding when people do well and get cured,” she said one morning in the clinic, where she, like everyone else, wore a mask.
The scene around her was astounding to the uninitiated, showing the powerful adverse effects of the medication, which included decades-old classes of antibiotics that had been once all but abandoned because of their toxicity. Almost all patients carried a plastic bag wrapped around their wrist. After taking the drugs from a nurse or volunteer, most patients quietly, and with as much dignity as possible, lowered their heads between their knees and threw up into the bags. They repeated this process again and again, some staying for two hours in all, retreating to the corners of the clinic before feeling well enough to leave. Some shivered in the midday heat. Others whispered words of comfort in their ears.
For some, the worst adverse effects came later, when they felt depressed – even to the extent of thinking about ending their life. One was Del Rosario, the interior designer who stopped taking the drugs three months before her end date.
Del Rosario said the drugs threw her into a deep depression. She started having panic attacks. “I just couldn’t fight the fight anymore,” she said. “I felt like I was always high on drugs. Sometimes I didn’t think it was worth living anymore.”
Another MDR-TB patient, a doctor of internal medicine who did not want to be identified because he feared that going public “would make me a marked man,” said he had been taking the medication for one year, and the effects had steadily worsened.
“It’s the mental anguish,” he said in a private room at the clinic, where he turned off the lights because the drugs had made him extremely sensitive to many things, including overhead lighting. “I started having severe hallucinations, suicidal ideations. I’ve tried to cope with it by talking with my wife and with my family. That helps for a while; then it gets worse. I’m grounded religiously, and I know that suicide is wrong, but I have prayed to the Lord, 'Lord, why can’t you take me now?’”
For an hour, he talked non-stop about his pain. Then he paused and drew himself up in his chair.
“It’s a personal hell,” he said slowly, in the dark room, “if the Lord will excuse me for saying it.”
The doctor had called Dr Gler frequently over the past year. He was not alone. Many calls were cries for help. Gler learnt to listen well, sometimes late into the night. Her work, she now knew, was not bound to the hours of the clinic, or to making sure patients received the correct dosages of drugs.
One late Saturday morning after the clinic had closed, Gler travelled with one of her youngest patients, the 14-year-old Charlene, to visit her home in the Belinde neighbourhood of Manila, a shantytown along the Pasig River. Charlene’s mother had died of MDR-TB, but first she had infected her daughter. Now the girl lived with three sisters, a brother and their father in a two-room shack with plywood walls. A fourth sister lived with a relative.
Gler took Charlene’s hand as they weaved through the alleys, sidestepping thin dogs, naked toddlers and men reeking of alcohol. At Charlene’s home, her three sisters, all teenagers, invited the doctor inside to talk. It had been difficult for them after their mother died, they said; they missed her terribly, and their father was rarely around. But now they said they were supporting each other as well as they could. Charlene was sitting out her second year of high school because of her illness – her father forbade it – but her sisters had been encouraging her to return next year after she was cured.
“I’m sure it will happen,” Charlene said. “I want to be a nurse and help others who are sick. I want to give back what was given to me.”
Gler smiled and encouraged her. She rose to go. Charlene took her hand and walked her back through the confusing alleyways, and then the two hugged. The doctor left in her car. She was going for an overnight to scuba dive with friends. She needed a break.
But she couldn’t yet – not after just leaving Charlene. “I worry about her – and her family support,” Gler said. “She’s a strong girl, but she’s just a girl.”
The doctor turned silent. She had so many MDR-TB patients, so much to do, so much to think about, including what would become of Charlene.
Decere Lai Jawili struggles to keep down her drugs from the International Center for Tuberculosis in Manila.