Blinded by TB drug: Ex-architect designs new lives amid tuberculosis horrors

David Dizon, ABS-CBN News

Posted at Aug 31 2018 08:56 PM

The first time that architect Eloisa "Louie" Zepeda felt there was something wrong with her body was when she was walking inside a mall in Cubao, Quezon City in late 2006. 

Zepeda, then 24, told her boyfriend: "I can't feel my feet hitting the ground." 

She did not have a cough. Overwork and her diet were causing a slight fever, she thought, which was easily beaten with paracetamol. And yet even with the medication, there was that weakness – a sense of disembodiment everywhere she went. 

Two days before the turn of the new year, Zepeda went to bed and did not get up for 48 hours. The New Year’s Eve explosions woke her.

“Hindi ko na kaya yung putukan. Parang abnormal yung dating sa akin. (I couldn’t stand the noise. It was abnormal),” she recalled. 

Zepeda said she tried to walk but her legs were stiff and she fell down the stairs. Alarmed, her parents brought her to a hospital in Las Piñas where she was diagnosed with typhoid fever, was prescribed medication and sent home. The medicine did nothing for her condition. 

“I couldn’t even sit properly, I kept falling down. Back in the hospital, they did a lumbar tap. They gave me all sorts of medicines for psychosis because I was shouting, I did not recognize my relatives. They put me in a room for terminal patients and asked for a priest,” she said. 

A doctor-friend suggested that she transfer to a bigger hospital in Makati. And finally, she got a name for her illness: tubercular meningitis – an offshoot of tuberculosis, which is an airborne disease of the lungs usually treatable with a six-month course of antibiotics. In Zepeda’s case, the mycobacterium tuberculosis had traveled to the membranes surrounding the brain and spinal cord. In some cases, tubercular meningitis could be fatal in a matter of days. 

The date was January 14, 2007 – 14 days into the New Year. 

Because the disease is most common in children under five, the initial diagnosis was initially met with some skepticism. There were also complications in Zepeda’s case: she slipped into a coma for several days, was half-paralyzed due to a stroke, had to be revived and was in a constant battle to keep her blood pressure in check. 

After a few months, Zepeda had recovered enough to start her anti-TB medication of rifampicin (RMP), isoniazid (INH), pyrazinamide (PZE) and ethambutol (ETB). 

On March 29, 2007, 3 weeks into the anti-TB program, Zepeda started losing her eyesight. 

“In the first 3 weeks, the doctor was telling me if I could see his fingers and I said yes. After the third week, I told him: ‘Doc, parang lumalabo.’ (It’s getting blurry.) I was seeing a fireball in front of me. And then he said one of the drugs I was taking would cause visual impairment for 6 months. My eyesight never went back,” she said. 

“My parents cried over it. But they were supportive. ‘Hayaan mo na, anak. Imbes na mamatay ka.’ (Let it go. It’s better than dying.)”

For six months, Zepeda took her medicines religiously despite all the side effects. At the end of treatment, she went to a party with her dad to celebrate. 

A co-worker noticed that Zepeda’s nape looked swollen. 

“They could see the sides of my neck were also swollen. Turns out the meningitis started from the neck and started creeping up the head. Nung tinignan nila yung MRI, punong-puno ng nana yung ulo ko. (When they checked my MRI, the infection had spread all over the brain.)” 

“So, it turned out, after 6 months of treatment, of vomiting spells and sickness, the four standard medications I had been taking didn’t work. And I was blind.” 

The Tropical Disease Foundation (TDF), a private, non-stock, non-profit organization with funding by the Global Fund to Fights AIDS, Tuberculosis and Malaria, placed Zepeda under a 24-month medication regimen to beat tuberculosis, which is different from the DOTS (Directly Observed Treatment, Short) Course of the World Health Organization. 

This meant more drugs – a handful of capsules and tablets a day – and an MRI every two weeks to check her progress. Her medical bills were also piling up: first, P250,000 for her first confinement, nearly P3 million for the second, nearly P20,000 a month for specialists and MRIs, plus out-of-pocket purchases for the first six-month regimen as well as health supplements.

“I had to do 18 months of treatment. I had to go from Las Pinas to Makati every day. No food before the treatment. And then injections on the buttocks or the shoulder, oral meds. And then after 30 minutes, I would vomit in a bag like clockwork. Good thing the TDF drugs were free,” she said. 

The TDF also decentralized her treatment, which meant Zepeda did not have to travel to Makati every day to get her medication but could get it from a social worker. 

The twice a month MRIs were her parents’ idea. “My parents reasoned: ‘Inom ka ng inom ng gamot, baka naman dinudurog na ang utak mo.’ (You keep taking medicines, it might be destroying your brain.) Baka kasi sobrang lakas yung gamot.” 

In 2 months, the MRI showed that the infection had gone down enough that she could discontinue one of her medicines. If taken too long, the medicine also had a side effect: deafness. 

“It just shows – If you don’t have the money for the program, it’s either you get the most severe tuberculosis or the most severe side effects,” she said. 

Zepeda said a series of well-timed financial “miracles” helped her parents from landing in the poor house. Others, however, are not so lucky. 

 “I would call it catastrophic costs. But what about other patients? Walang-wala. (They have nothing.) They have to ask the [Philippine Charity Sweepstakes Office], the mayors.” 

NOT A POOR MAN’S DISEASE

TDF consultant Paul Bagtas does not subscribe to the definition of tuberculosis as a poor man’s disease. Working for the TDF, first as full-time staff and now a consultant, for a number of years, he has seen people from all walks of life ravaged by the illness, including health workers, businessmen and bankers.

One prominent figure in the past also succumbed to tuberculosis in 1944. His name: Manuel Quezon, first Philippine president of the Commonwealth. 

Around 1 million Filipinos are estimated to have TB, according to the 2016 National Tuberculosis Prevalence Survey. The same survey revealed pulmonary tuberculosis (PTB) prevalence rate at 1,159 per 100,000 population.

The survey also showed that more people diagnosed with TB took no action in 2016 (41%), compared to the 2007 survey (25%). TB patients who self-medicated or took no action said their symptoms were too trivial to warrant consultation (41.2%), the health care facility was too far or that they did not want to skip work (35.2%). 

The anticipated cost of consultation was also cited as a reason for not seeking care from a health worker. Fewer individuals consulted a healthcare worker in 2016 (19%) compared to in 2007 (32%) but the “proportion going to public providers improved from 54.2% to 67.0%,” it said. 

Bagtas said one finding in the 2016 survey was that women were more likely to self-medicate than men “because they are expected to help in the house…they are not allowed to get sick.” 

A Commission on Audit report also revealed at least 12 Philippine hospitals saw a decline in the rate of successful treatments of tuberculosis in 2017. One hospital, San Lorenzo Ruiz Women’s Hospital, saw its treatment success rate in 2016 drop to 57.97 percent last year. 

This caused the Department of Health to fall short of its goal of a 90% treatment success rate for the National Tuberculosis Control Program. 

Hospitals said the declining success rate for TB patients is due to increasing number of patients still undergoing the 6-8 month treatment, increase in patients who were lost for follow-up, patients who died under treatment caused by other underlying diseases, and patients who were not evaluated in a given year. 

Bagtas said one reason cited by TB patients who drop out of the treatment is geography: some barangay health centers or hospitals are just too far from their own homes. This is the reason why the National Tuberculosis Program is decentralizing DOTS treatment for TB sufferers, allowing them to choose community care or home care so they could bring home the medications. 

There is also stigma. One reason why some TB sufferers do not divulge their condition is that they could either lose their jobs or just can’t get employment, Bagtas said. 

He cited one case of a female student who interned for a company and was offered a job, only to be dropped after she tested for TB. 

“There is only a certain period when a person with TB is considered infectious. Once a person tests negative in a sputum test, he or she should be allowed to work,” he said. 

Zepeda added: “We still need awareness raising for those who are treated already. When you undergo the DOTS program and you finish it and you are cured, you get a certificate that says you are disease-free. As long as wala kang nakakahawa, OK ka na. ( As long as you are no longer infectious, you are OK.) Why discriminate?” 

SUICIDAL

Depression among TB sufferers is no joke. For Zepeda, every day of her TB treatment was horror relived - with her eyesight slowly dimming and her weight dropping from 139 lbs to 109 lbs. 

“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). I almost threw myself off the stairs once. Sometimes, I would drink my medicine and weep because I knew the retching would come after.”

“I told my boyfriend to leave me, look for another girl. There was depression and there was fear, that some other girl would snatch him. Other people said I was insane if I thought I would have a future with someone now that I was blind,” she said. 

Help came when her mother asked her to join a group that helped persons with disabilities (PWD). At first skeptical, she said she found something different when she interacted with people facing their own unique challenges. 

“I was sarcastic at first. What will I get from that? But then I saw people who were in worst conditions than myself – people who were blind, or paralyzed, but still wouldn’t give up fighting,” she said. 

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Fired up, Zepeda threw herself into the work as a volunteer in her local PWD organization before joining AKAP Pinoy, a national group for PWDs. She started giving speeches about her ordeal, 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.

“I wanted to work on disability inclusion in public policy, and I wanted to work with the World Health Organization. My time in Switzerland helped me work as an intern for WHO’s Non-Communicable Disease Team,” she said. 

In 2012, she got another surprise. Her boyfriend, Marcus Teng, proposed in spectacular fashion during a TV taping of her life story for a local network. She wept then, confiding that aside from her parents, it was Teng who had stood beside her – bringing her to her talks both locally and abroad – and then taking care of her during her darkest days. 

“It had to be him. If he was in any way competitive, I could just be home every day waiting for him while he worked. But every single time, when we have a situation, he would say whatever happens, let’s weigh things on which outcome will make us both winners,” she said. 

Zepeda and Teng were married in 2012; a baby would follow in 2013. She would later find work with the Zuellig Family Foundation before joining the Regional Green Light Committee (RGLC) of the WHO Western Pacific Regional Office as a volunteer. 

Her work now and her past experience as a volunteer has also hardened in her a certainty - that every little bit of support for a person with disability helps. 

"One child we helped had a cleft palate. He had just recovered from TB. I asked him if he wanted to get the cleft palate fixed but he said he didn't have any money. I made a few calls and was able to get someone to give him surgery for free. Sobrang tuwang-tuwa ng mommy niya (His mom was so happy)." 

"Another time, a TB patient explained that he had to get his anti-TB medication from Mindoro even though he had already transferred to Cavite. He assumed that because he registered there, he had to get the medicines there as well. I said there is no such rule. You have to understand people's assumptions about the law. You have to teach social mapping, to get in touch with the right people." 

She also acknowledges that there are still plenty of challenges along the way. Some of those challenges include the need for palliative care for TB sufferers who are going blind, developmental pediatricians for kids with autism suffering from TB, interpreters for the deaf with TB. 

Another project that she envisions is an app that could help TB sufferers by reminding them to take their medicines every day. The app could also be used to call a doctor or health worker to answer possible health questions of a TB sufferer or PWD. 

"The Global Fund even told us to form our own group, and try to do some TB programs. Even just advocacy, not treatment or case finding. Basta may record ka (You have to have a record)," she said. 

VULNERABLE 

The biggest challenge, however, for TB sufferers is lack of social protection. In Zepeda's case, she said she had been working for 2 years and was able to get a P50,000 lump sum from social security when she got TB meningitis. 

"I had no monthly pension for disability. What if I got sick when I was still studying and not giving money to SSS? You get nothing," she said. 

She added: "When I spoke about this before the WHO RGLC, Japan, Australia and even China [health ministers] were shocked because they have mechanisms. Ano mang edad ka magkaroon ng kapansanan, meron kaming pension para sa iyo. Dito wala. Wala talaga tayo. Kailan niyo uumpisahan alagaan ang mga vulnerable groups na totoo? Hindi lang yung may kontribusyon siya kaya may ibibigay sa kanya."

(Whatever age you are when you get sick, we have a pension for you. Here, there is none. When are we going to take care of these 
vulnerable groups? And not just help because they already contributed.) 

"There's not even money for jeepney fare for those patients to get to the health centers." 

She also pointed out the need for a support system for TB sufferers after they are cured. 

"If you talk to the survivors, all they want is a livelihood. We're finished with that, we want to restore what was destroyed but there are no offers. I talked about it with the Department of Social Welfare and Development and they had no idea that there is this group of TB survivors na hirap magkaroon ng trabaho (that can't get jobs). It wasn't being reported." 

Zepeda said the successful push for a PWD Law has helped greatly in easing the suffering of many persons with disabilities. 

Under the law, PWDs are exempted from the 12-percent VAT on land transportation, domestic air and sea travels; on fees and charges for medical and dental services including diagnostic and laboratory fees, and professional fees of attending doctors in all government facilities as well as in all private hospitals and medical facilities; on cost of medicines; on funeral and burial services; on fees and charges in hotels, restaurants and recreation centers; and, on admission fees in theaters, cinema houses, concert halls, and other similar places of culture, leisure and amusement.

While she misses her work as an architect, Zepeda said she has found new purpose, not in designing buildings but "designing lives." 

At times, the old depression hits her. Zepeda still lives a strictly controlled life: she has yet to learn Braille, does not use a cane or seeing eye dog. She stays mostly indoors and goes out only when assisted by her husband or parents. 

She does have one fear: what if her 5-year-old daughter also contracts tuberculosis? 

"I don't know. Definitely, if it was meningitis I would want her to take something else, maybe the new drugs, bedaquiline and delaminid (both drugs used for multi-drug resistant TB)," she said.

"I don't want her to get sick but if she does, I do want one thing. I don't want her to take medicine that will make her go blind."