In this fast-paced world, it is easy sometimes to forget the individual stories of those affected by the three diseases. These personal stories resonate with all of us as global citizens. They are critical in highlighting the significance of the work of Global Fund–supported programs, bringing true meaning and value to the $13 billion replenishment target.
World TB Day is on 24 March. GFO took some time this week to talk with Ms Louie Zepeda-Teng, a speaker for the Global Fund Advocates Network Speakers’ Bureau, about her life which took a dramatic unexpected turn when she contracted tuberculosis in 2007.
GFO: Could you please tell us about your personal experience with TB?
Louie: In 2007, I contracted tuberculosis (TB) meningitis. I remember it all so clearly. It was New Year’s Eve, and I didn’t feel right, I couldn’t enjoy the night. The next day, I fell at home, it felt like my body couldn’t follow the command of my brain. My parents rushed me to hospital, the second best in Manila, Philippines. It took them two weeks to diagnose me with TB meningitis. By this stage I couldn’t recognise my family anymore. Everyone thought that I had only hours to live. The priest had even been called to give a blessing.
A private physician specialising in internal medicine put me on four lines of TB medication, and sent me home. After three weeks of being on treatment, I started to lose my vision. Things got worse, I became paralysed down one side, and had a mild stroke. My parents called the ambulance and rushed me to hospital. This time I was taken to the premier hospital in the Philippines, the one where the President goes. It was in this hospital that they were able to confirm that three of the drugs I was on were not working. They diagnosed me as having multi-drug resistant TB (MDR-TB), changed my treatment regimen and told me that I would be on this treatment course for 24 months. I was 24 years old, and had been about to take my board exam to become an architect.
GFO: Was it difficult to access the correct treatment when you were first diagnosed?
Louie: What I didn’t know at the time was that many of the doctors were not accredited. No one told me that I should see a TB-accredited doctor – the ones that had been trained by the National Tuberculosis Program. The private physician I first saw had not been trained in TB, and therefore did not prescribe treatment according to the guidelines. Also tuberculosis meningitis is rare. Back in 2007, most who had it would die very quickly, particularly those who were living on or below the poverty line and could not afford to pay to see a doctor. I was lucky that my family could afford to pay.
GFO: As a result of that initial care and treatment, how did that affect your recovery from TB? What support did you get when you were being treated for MDR-TB?
Louie: As a result of the first incorrect treatment, I lost my vision permanently, experienced partial paralysis, muscle spasms, hypothyroidism, symptoms of Parkinson’s, signs of early menopause, and severe depression. Had I been correctly treated on my first hospital visit, my life today would be very different.
When I was admitted to hospital the second time, it was fortunate that the Tropical Disease Foundation (TDF) – the principle recipient for The Global Fund in the Philippines for TB at the time – was supporting the TB DOTS program in the hospital. They immediately put me on the correct treatment regimen after confirmation. I was the first person in the Philippines to access MDR-TB treatment free of charge because of the Global Fund–supported program. After I received injections for two months, the TB abscesses (microtubercles) in my neck and brain reduced quickly.
My recovery from TB has been long and difficult. Whilst I had access to free MDR-TB treatment, I had to pay for the ancillary drugs and doctor’s appointments for the other side-effects and symptoms. I live two hours away from TDF DOTS centre, and there was no support to get to and from the centre. That was why for the first three months of MDR-TB treatment, I stayed in hospital. I had to manage my own care, I had to do everything for myself. I had to learn about the disease, and the other side effects, there was no information out there. My depression was very severe, and again, there was no support for me. The only thing that I knew I could depend on was the quality of the medications being provided through the Global Fund.
GFO: You have been a strong public advocate for TB and disability since you became ill. Can you tell GFO readers why that is so important to you?
Louie: When I was in the last three months of my treatment, the Philippines had signed the UN Convention on the Rights of Persons with Disability. The district where I live was calling for people to establish a disability federation. The local district administration had been told about a “blind girl” and they contacted me. This was the start of my advocacy work.
I heard so many stories of a patient who was hearing impaired and went to the clinic because he had a cough for more than three weeks, and had read about TB. At the clinic, the nurses avoided the patient because they didn’t know how to communicate with him, so he returned home, didn’t go out anymore, and never received a diagnosis or treatment. I was recommended for an ASEAN (Association of Southeast Asian Nations) scholarship and undertook a degree in in public policy, so I could continue to advocate and speak out on their behalf.
Even The Global Fund does not have data on disability in their programs. My role is to advocate so they know how to take care of us, to include us, and take this forward and also have us included as a key population. I am a member of the country coordinating mechanism and we were able to list persons with a disability in our recent concept note. However, much work still needs to be done, patient-led care remains very much rhetoric, but rarely practiced.
GFO: How have Global Fund–supported TB programs in the Philippines assisted in increasing access to the correct diagnosis and treatment?
Louie: A lot has changed since I was diagnosed. There are now over 80 TB MDR treatment centers and diagnostic facilities throughout the country, a mix of public and private DOTS facilities. The DOTS program giving the standard six-month regimen has been decentralised, and responsibility devolved to local government. The Philippine Business for Social Progress (PBSP), a non-government organisation and the current PR for the TB grant, is working with the Department of Health and mayors of each city to intensify and accelerate DOTS delivery, and mainstream the programmatic management of drug-resistant TB. A specific focus is on addressing the inequitable service provision, targeting the poorest 300 municipalities in the country with high TB burden. The grant is also supporting the procurement of the second-line drugs for drug-resistant TB, and the critical training of the health care providers in the diagnosis and management of TB – something close to my heart, given my experiences! The mayors cover the costs of the fees for nurses and doctors, and also the ancillary medications.
There remains much to do, despite the program improvements from when I was diagnosed. There is still a lack of awareness by both health care workers and patients. Many patients still do not know that the treatment is free, and the professional fee is covered by the mayors. Health care workers lack skills in patient-centred care, and negative attitudes towards patients persist.
GFO: What do you think the greatest benefit of The Global Fund has had in the fight against TB in the Philippines?
Louie: Frankly speaking, before The Global Fund grants, no one really cared if people were dying from TB. The attitude existed that it was an ancient disease that we cannot do anything about, and that there are more pressing diseases. The Global Fund investment has meant that there are now many people in the Philippines assisting with the TB efforts of the country. When I was undergoing my TB treatment, I had never heard about it [TB] and what were my rights. Now, the messages are out there, the treatment is available and is free, training of physicians is being conducted, and the country dialogues have given us a voice.
GFO: Lastly, can you tell our GFO readers why it is important to you to “Unite to End TB” this World TB Day?
Louie: Its important to unite for my daughter. I am scared for her every day when someone coughs in front of her, I don’t want what happened to me to happen to her. Its unnecessary, we have the tools, we have the treatment to cure TB. Its unacceptable that this ancient disease is still the sixth leading cause of mortality in the Philippines in 2016.