Mildred Fernando was diagnosed with tuberculosis in her native Philippines nearly 12 years ago, at age 19. We caught up with Mildred after she spoke at a RESULTS event for World TB Day 2013, eager to hear more about her experience with a multidrug-resistant strain of the disease, the help she received from the Global Fund and her courageous, decade-long fight back to health.
Friends: So why don’t we start with a little bit of the history behind your experience with multidrug-resistant tuberculosis (MDR-TB).
Mildred: I was diagnosed to have TB in the year 2001; I was at my last semester in college during that time. I got it from my father. I went to a private doctor for treatment and diagnosis was through x-rays only. So the doctor gave me first line drugs, and then I took them every day. After six months, I wasn’t cured. And then another cycle took place with the same doctor, still using x-rays. My father already had resistance to drugs, but I don’t know why the doctor didn’t intend for me to undergo certain tests.
After five years, the last doctor said that she didn’t have any drugs that she could give to me. So she referred me to the Global Fund-financed Tropical Disease Foundation (TDF). I went there, they had me screened, and then I underwent sputum collection. I finished my treatment after 18 months. During that period I suffered from electrolyte imbalance and drug-induced hepatitis. I had profound hearing loss, especially in my right ear.
In August 2008, I was declared cured. After six months, I went back to TDF for my first post-treatment check-up. And I found out that I relapsed.
Friends: [Oh my God.]
Yeah, it was actually a decade of TB. So I relapsed, and I had to undergo another treatment for 24 months, which was covered by a clinical trial. I was confined in the hospital for six months. I lived in the hospital for six months. I underwent an operation and they put a catheter in my right arm, where one of the injectable drugs is administered twice a day for six months. After six months, I had lung surgery. So part of my right lung was cut out, and after my surgery I continued to do my treatment until I finished my 24 months of treatment.
Friends: What were some of the side effects you experienced?
The most visible adverse side effect that I experienced was that my skin discolored. So, I used to have fair skin. But due to one of the drugs I had, it discolored. My sweat, my tears, they are orangey in color. And still now, after two years since treatment, it hasn’t come back to its normal color.
Friends: So what work are you involved in now?
I participated in an advocacy video titled “MDR-TB Patients Speak,” [among other media appearances]. It was produced by the Tropical Disease Foundation in partnership with Stop TB.
Currently now I am working as an accountant at Management Sciences for Health, but I had my first work at Tropical Diseases Foundation. When I was under treatment, I became an employee for Tropical Disease Foundation under the project of Global Fund, particularly the programmatic management of drug-resistant TB. So I know the project works, programmatically and also financially.
Friends: Do you want to talk a little bit about the project?
The project itself is very much holistic. Aside from the jobs they provide, they provide transportation allowance, housing allowance to make it possible for those that have to relocate to be able to get treatment. But they classify patients according to income standards, so only those who are really in need are provided with allowances and financial support. And also they have this General Assembly monthly for patients. They educate patients regarding the disease, how can they become more responsible. And also the patients themselves have weekly discussions so they share stories on what they do to combat the side effects, so they support each other. So, they also have psychologists which the patients can consult with in case there are problems, because most of the TB patients had family problems. Sometimes the families themselves do not understand the patient. And also because of the side effects, one of the side effects of the drugs.
Friends: I don’t know how much you can speak to this but, overall, do you think the Global Fund has changed the Philippines?
Right now my boyfriend still works at TDF. I think they are doing great. As I have said, they’ve already covered 17 regions in the Philippines. And also they continue conducting trainings for doctors, to be able to make them more knowledgeable in treating the disease. I think they are also engaging private doctors in the treatment of MDR-TB.
Friends: What made you decide to become an advocate?
I think it is my responsibility to share and give inspiration to the other people who are currently undergoing treatment. Recently I received an email. She said she is in her first day, I think, or her third day of treatment under the Global Fund [program]. She is asking me what do I do to avoid vomiting, what do I do to ease the headache after taking the drugs, or what should she eat after taking the drugs so that she will not vomit. So it is very fulfilling to be able to share my stories with them and also give advice on how treatment will become a bit lighter, although it is really so hard to finish the treatment for 18 months.
This post was originally published in July 2013.