Nino Magpusao, a market vendor, had plans to go back to college in 2008 when he started coughing blood.

The oldest in a brood of six, Magpusao was 19 years old when he started having night fevers and chest pain.

“Ako kasi yung tao na hindi iniinda yung sakit hanggang kaya ko pa. Ayaw ko kasi gumastos. Tapos nung sumuka na ako ng dugo, dinala ako ng nanay ko sa health center. Binigyan nila ako ng gamot tapos ang sabi inumin ko lang ng 6 na buwan, gagaling na ako.

(I’m the kind of guy who ignored pain as long as I could tolerate it. I didn’t want to spend. When I started coughing blood, my mom brought me to the health center. They gave me medicine and told to keep taking it for 6 months so I would get well.)

Magpusao was only prescribed one TB drug instead of the usual 4 for the six-month regimen for pulmonary tuberculosis. He also took a lackadaisical approach in taking his medicine: forgetting to take it at set times or even skipping it for days. “Hindi ko sineryoso yung TB (I didn’t take TB seriously),” he said.

At the end of 6 months, he pronounced himself cured of the illness and stopped taking the medicine.

A few weeks later, the symptoms including vomiting up gouts of blood came roaring back.

The diagnosis showed Magpusao’s TB had progressed from pulmonary to multi-drug resistant TB. The old drugs would no longer work. Instead, he was prescribed a new regimen of 15 different drugs instead of the usual 4 plus four injections 4 times a week, for 22 months.

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“Nung nalaman ko na 22 months ‘yung gamutan, ang una kong naisip – ano na gagawin ko sa buhay ko? Dapat nagtatrabaho na ako, ngayon magiging palamunin ako ng 2 taon e di naman kami mayaman. Panganay pa ako. Tapos nung time na yun nag-aaral ako ng college, hindi na natuloy,” he said.

(When I found out that the treatment would take 22 months, the first thing on my mind was – what will I do with my life. I was supposed to be working, now I’m just going to be another mouth to feed for 2 years. We were not a rich family and I was the eldest. I was studying in college, and I had to stop.)

It would take nearly 3 years before Magpusao would completely beat TB. But not without cost – the streptomycin injections he needed had left permanent damage to his hearing.

“I didn’t go deaf but my hearing is not good. Remembrance ng TB,” he said, noting that streptomycin injections for MDR-TB would be phased out because of those side effects.

“If only they discovered those new drugs earlier,” he added.

A WORLDWIDE KILLER

Considered the biggest infectious-disease killer worldwide, tuberculosis comes from the pathogen mycobacterium tuberculosis and spreads from person to person through droplets. The bacteria usually attack the lungs, but TB bacteria can attack any part of the body such as the kidney, spine, and brain.

The World Health Organization lists the Philippines as having the highest incidence rate of active TB among all Asian countries. A 2019 Global Tuberculosis Report also shows the Philippines is among 8 countries that account for two-thirds of all TB cases. It ranked fourth behind India, China and Indonesia, recording approximately 591,000 cases in 2018.

The National Tuberculosis Control Program report for 2021 says an estimated 599,000 Filipinos fell ill with TB in 2019, with 27,000 dying of the disease.

“Between 2015 and 2019 TB mortality in the country has been reduced in average 2.8 percent annually,” the report said.

Lockdowns caused by the COVID-19 pandemic have upended those gains in 2020. According to the NTP report, only 257,000 new and relapse TB cases were detected in the country – a gap of 342,000 estimated and notified cases.

“In 2020 about 152,000 fewer people with TB were detected by health systems in the Philippines compared to 2019,” it said.

• Coronavirus hinders Philippines' efforts to eliminate tuberculosis - health official

THE BARRIO DOCTOR

Former barrio doctor Alberto Ong Jr. says the Philippines had been making great strides in the war against TB over the years.

Ong, who currently leads active TB case finding project in Regions 4A, 4B, and Bicol for The Culion Foundation, worked for 2 years as a doctor to the barrio in San Sebastian, a sixth class municipality of 8,000 people in Samar.

Fighting TB in Samar presented some unique challenges. According to Ong, one such challenge was how to diagnose patients with TB when the medical technician would only visit the health center once a week. Ong would schedule the patients to come for sputum tests during those weekly visits.

“Wala kaming medtech sa health center so ang hirap magdiagnose ng TB sa amin. Usually, x-ray or sputum test. At that time, dapat sputum test. Swerte ‘yung mga taga población kasi lalakarin lang nila papunta sa health center pero yung mga taga ibang barangay, sasakay pa sila nang habal-habal na worth 30 pesos/60 pesos balikan and that was 9 years ago,” he said.

“The tests are free but there are indirect costs – the transpo and the time. If they want to get an x-ray, they have to go to the city na mahal ang pamasahe.”

Ong also arranged for health workers to make daily visits to DR-TB patients who could not afford the daily trip to the health center for their streptomycin injections.

“Kailangan 2 months na injectable, araw araw sa health center. Problema dun kung hindi siya malapit sa health center. What we did with those cases was – we had nurses who were coming from the other municipalities. Kapag papunta na sila sa health center, dinadaanan nila yung pasyente tapos ini-inject. Inuuwi nila yung meds tapos pupuntahan nila yung pasyente. Minsan pati weekends pinupuntahan nila para lang matapos yung 2-month treatment. Dati yun kasi in 2017, tinanggal na yung regimen na iyon,” he said.

BEST PRACTICES

A willingness to go the extra mile can boost case detection of TB patients, Ong said.

During his time as Junior Area Facilitator for the Philippine Business for Social Progress, he advocated that all probably TB cases undergo Genexpert diagnoses, which is the gold standard in detecting the presence of TB bacteria.

The only problem: there was only 1 Genexpert machine in Tablas Island for the entire province of Romblon.

An enterprising midwife found a solution: she would gather the sputum specimens from probable TB patients, put the slides in a cooler and send the slides by boat to Odiongan town in Tablas. A nurse would then pick up the slides and run them through the Genexpert machine.

“During that first month, we detected so many cases of drug resistant (DR) TB. We were surprised that 1 out of 800 residents on the island seemed to have DR-TB. Masyado mataas,” he said.

It wasn’t just the health workers that were doing their share in the fight against TB. In Burias Island, Masbate, officials put up a P500,000 fund for tuberculosis patients. DR-TB patients who needed treatment would be sent to Legazpi, Albay.

“Sagot nila pamasahe papunta at pabalik. Supported ng munisipyo yung pasyente habang nasa Legazpi. Ang gastos po nun,” he said.

Another win in the fight against TB is real-time reporting of data. That wasn’t always the case, according to Ong.

“When I was still a doctor to the barrio in Samar, we were fastest to encode [TB cases] in the municipality while other towns sometimes take a year before they update. That meant that at the national level, policies were based on 2-year-old data. Now it’s all real-time. Once a health center encodes it even in the provinces, that will reflect in the national database,” he said.

Ong said that while there are improvements in the fight against TB, there are still challenges in the demand and supply sides.

There’s wider awareness that TB can be cured, and that all it takes is a 6-month regimen. Social stigma has also lessened, he said, as more patients are less hesitant about being seen getting their TB medication at the DOTS centers. Health-seeking behavior also needs to improve: some patients simply do not want to admit if they are already experiencing symptoms of TB.

On the supply side, one challenge that needs improvement is availability of TB medicine for children.

“Challenging ngayon ang TB in children, minsan walang gamot para sa bata. Doon nga sa Zamboanga, may nagtatanong – pwede ba magrefer sa inyo ng mga bata? Kasi wala kaming gamot. When you look at the national data, mababa pa ang case finding natin on TB in children. Base sa strategy ng government, kailangan I-improve yun. We can improve that, but we also need to make sure there is available medicine,” he said.

THE ADVOCATE

Compassion is key in dealing with TB patients, according to TBPeople Philippines Organization president Eloisa “Louie” Zepeda-Teng.

Teng was working as an architect in 2007 when she was diagnosed with tubercular meningitis, a form of tuberculosis in which bacteria had traveled to the membranes surrounding the brain and spinal cord. In some cases, tubercular meningitis could kill in a matter of days.

For Teng, one immediate side effect of the TB drugs she was taking was permanent blindness. At one point, she slipped into a coma for several days, was half-paralyzed due to a stroke, and even had to be revived.

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“In 2008, I was on the brink of suicide. Nandun na ako sa inuumpog ang ulo. (I was at the point where I was banging my head on the wall). Malapit ko nang ihulog sarili ko sa hagdan,” she said.

Teng said her depression lifted after she joined a group of PWDs, some of whom were in even worse shape. She started working as a volunteer for various PWD groups, which led to her taking a Master’s degree in Switzerland through a scholarship by the Institute on Disability and Public Policy – the world's first virtual graduate institute on disability and public policy.

She worked for various organizations including the Regional Green Light Committee (RGLC) of the WHO Western Pacific Regional Office until she decided to form the first TBPeople chapter in Asia last March 2020, just before the COVID-19 lockdown.

One program launched by TBPeople Philippines is the TB Treatment Buddy, which offers one-on-one online peer support for TB patients.

“You tell me what's your problem, you tell me what you don't understand about the disease and the program…You have a treatment partner in the health center but you can’t really talk to them about your depression so kami yung pwede mong lapitan. You can talk to me anonymously. We then put those issues into the system to tell the National Tuberculosis Program – these are the problems, these are the things they don’t understand. We need to make the service providers more compassionate because it takes just a split second to trigger a TB patient into depression,” she said.

Sometimes, lack of training for community health workers can worsen the illness for TB patients.

One patient in Cebu had echoes to Nino Magpusao’s case: he was only being given one drug – rifampicin – instead of the usual 4.

“He was taking it for several months before we found out. We told him he was underdosed, by that time he was already having breathing problems. When they arrived at the center, his wife called and told me: ‘His fingernails are turning black.’ I told her: “That’s an emergency case already. You need to bring him to the hospital.” He died in the hospital,” she noted.

TREATING EP-TB, XDR-TB CASES

Teng also sounded the alarm on extrapulmonary (EP)-TB and Extensively drug-resistant TB (XDR)-TB cases in the Philippines.

According to the Centers for Disease Control and Prevention, XDR-TB is a rare type of multidrug-resistant tuberculosis (MDR TB) that is resistant to isoniazid and rifampin, plus any fluoroquinolone and at least one of three injectable second-line drugs. Patients who are diagnosed with XDR-TB usually do not take their TB medicine regularly or do not take all of their TB medicines as prescribed.

Latest NTP data showed there are now more than 50 XDR-TB cases in the country, Teng said.

One case handled by the TBPeople Philippines Organization involved a 31-year-old man who was undergoing treatment for TB for the third time.

“He was finally going to get the right regimen. And then he started coughing blood and died. He left a wife and kid and now the wife is already coughing. So we advised them to do contact-tracing, reminded them about TB preventive treatment. ‘Yes, Mam, this time we’ll do it right.’ Except it was too late,” she said.

Another case involved a patient with Pott's Disease, also known as tuberculosis spondylitis, which is a rare infectious disease of the spine. “He was given 6 months to live. Why? Because he couldn’t produce an MRI to show that the infection had reached the spine. Ano yun? Bahala ka na? Opo, basta pa MRI muna and then they will give me the meds for 1 year that will treat spondylitis,” Teng recalled.

Jeffrey Derilo, 29, was working as a cook in a restaurant in Guiguinto, Bulacan, when he was diagnosed with pulmonary tuberculosis in 2019.

Derilo, who used to do 13-hour shifts in his old job, said he ignored the symptoms until the TB reached his spine.

“Spine ang tinamaan sa akin. Akala ko simplemeng pananakit lang ng likod ang nangyayari. Nagkaroon din ako ng abscess sa tagiliran, may nana,” he recalled.

During his 9-month treatment, Derilo endured horrible pain: extreme back ache, palpitations, breathing problems, light sensitivity. He used a brace for back support and needed to be helped by his wife just to walk.

“Umumbok na yung buto ko sa likod, yung thoracic spine. Simpleng pagbiyahe o simpleng pagmo motor hindi ko magawa. Hinihingal at masikip madalas ang dibdib, palpitations tuwing gabi. Pag matutulog na ay mas nahihirapang huminga, inaabot minsan ng 4 a.m. to 7 a.m. gising pa din ako ,” he said.

Today, Derilo uses that experience to tell people not to ignore the signs of TB.

“Ang lakas lakas ko pa dati, nag gi gym p ako. Umaabot ako ng 12-13 hours sa kusina, ganun katikas ang pangangatawan ko. Hindi ko lubos maisip na tatamaan ako ng sakit…Iniisip ko kasi sayang yung kita, maling-mali po pala yun. Dapat maalis sa isipan ng tao yun at pahalagahan yung gamot kasi gaano ka man talaga kalakas ngayon, hindi mo alam kung kailan ka tatamaan ng sakit.”

LIFE AFTER TB

Kit Padilla, then 21, had just quit his job at a BPO in 2015 and was planning to put up a business when he was diagnosed with DS-TB or drug sensitive tuberculosis. The most common type of TB, treatment of DS-TB usually takes 6 months.

Padilla, however, took the drugs for 2 months and then stopped when he started feeling better.

Four years later, the TB made a comeback – this time as drug-resistant TB.

“I have to enroll for 9 months. Ang araw-araw kong kalbaryo, I have to take 17 tablets. Everyday din, kailangan ko ma-injection-an. Kalbaryo talaga…5 minutes after taking the medicine for DR-TB, mahihilo ka at magsusuka. Minsan pagnagbibiyahe, kailangan ko bumaba ng jeep o ihinto yung dina-drive ko na sasakyan para sumuka,” he said.

Padilla also endured leg pain after the TB drugs elevated his uric acid levels. His skin also started to darken while his eyesight was temporarily affected.

Padilla said he never considered going back to the BPO industry after recovering from DR-TB. The reason is simple: graveyard shifts and tuberculosis can be a lethal combination.

Zepeda said she was reminded recently about the need for compassionate care for TB patients.

“I have a group chat for EPTB patients – both kids and adults. One time I was talking to a patient and I saw myself in her. She was slurring her words. Naalala ko ganyang-ganyan ako...Iniisip mo paano mo igalaw ang lalamunan mo,” she said.

“This is what I want for people -kung paano ginawa yung intervention, yung rehabilitation sa akin, na full force yung pamilya, yung Tropical Disease Foundation that time – ‘sige, iuuwi natin yung gamot sa barangay mo o sa bahay mo.’ Yung pumupunta na health worker sa akin, mabait. Pinapakain ako ng sandwich. It was very friendly. Makokonsiyensiya na lang ako kung hindi ko ininom.”

Is there life after TB? According to Magpusao, TB doesn’t need to be a marker that life is over.

After his 3-year-ordeal, Magpusao worked a series of odd jobs – computer shop attendant, factory worker, janitor, accounting staff liaison, volunteer and eventually vice-president of TBPeople Philippines. His first job is to answer all queries coming into the TBPeople Philippines website and do site visits.

“Halos 3 taon ang treatment ko. Ang lala. Pero sobrang powerful yung nangyari na yun kasi until now, nagagamit ko yung experience na yun sa mga tao na may TB,” he said.

“When TB patients tell me the 6-month regimen is too hard, the tablets are too big, I tell them my story. Nari-realize nila mapalad sila kasi anim na buwan lang. Hindi ako nananakot pero pinapakita ko na ayaw ko mangyari sa kanila yung nangyari sa akin.”

“It takes time to absorb the idea. Sinasabi ko nga: Ang taong may kuwento, may kuwenta. May aral. Hindi lang health worker ang maaaring tumulong sa TB patient, pwede rin ang TB survivor na tumulong kasi pinagdaanan na nila. Alam na nila pangangailangan. Alam nila ang pakiramdam.”

This story supports the #TBFreePH campaign of the Department of Health (DOH). With the help of the United States Agency for International Development (USAID), #TBFreePH aims to increase and improve conversations about TB and help address stigma and discrimination experienced by persons with TB.