MANILA, Philippines – The images of tuberculosis patients from the developing world are often painful to look at: the outlines of rib cages taut against skin; arms and legs no thicker than wiffleball bats; a wild-eyed look of fear from sunken eyes.
But the image of Mildred Fernando, captured here by photographer Riccardo Venturi, turns heads toward her.
Fernando, 29, is as much the face of TB today as any of the 9 million who become sick with it every year. She didn’t have just any TB. She had XDR-TB, which stands for extensively drug-resistant tuberculosis and is one of the deadliest infectious diseases in the world. She had it twice. She received treatment twice, too, 18 months each time.
Today, for the first time since she was 19, she’s healthy.
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She’s also fortunate. There are no good global estimates about survival rates for XDR-TB patients, but there are anecdotal stories of very low odds of beating the disease in HIV-fueled TB epidemics such as South Africa. This type of TB was first named XDR in 2006 when 53 patients in a rural hospital in Tugela Ferry were found to have it. All but one died. Now, nearly 60 countries had reported documented cases of XDR-TB.
Photographer Venturi and I are on a three-country tour over the next few months at the invitation of the Japanese company Otsuka Pharmaceutical, which has provided us with funding to report independently on the recent responses and innovations used to fight the ancient disease of tuberculosis – as well as the people who have the misfortune of getting TB. One in every three people in the world has latent TB, and 10 percent of them get active cases of TB in their lifetimes. An estimated 1.7 million people die every year from it.
Now, though, there are several hopeful developments from laboratories and clinical trials around the world to significantly reduce that death toll, and the question may soon become whether countries will be ready to act and pay for these new breakthroughs that could save millions of lives.
Already, several countries, including the Philippines, have been purchasing the GeneXpert machine, which was recently found to accurately diagnose drug-resistant TB in two hours, a vast improvement from the most common test that takes two months. Funding from the United States and the Global Fund to Fight AIDS, TB, and Malaria has been critical in allowing developing countries to become more aggressive in their fight.
The story of Mildred Fernando underscores the urgent need for better tools. But her story also reminded me of something that global health legend Bill Foege, a former head of the Centers for Disease Control and Prevention and one of the leaders of the eradication of smallpox, once told me: “Tell stories that readers can’t turn away from. Make them look at the people affected by these diseases. Only then will they connect and understand.”
Looking at Mildred Fernando is seeing a life that was in the balance, a ferocious disease untamed in one hand and a person’s will to live and a collection of old medicine in the other.
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TB could have killed her whole family. Her father died from it in 2003. And both her sisters had it. They survived after six months of treatment. (Their mother died four days after Mildred was born from complications following the birth.)
In November 2001 – exactly a decade ago – a doctor first diagnosed Mildred Fernando with the disease. That led to a series of missteps over the next several years by a series of private doctors who made such simple errors such as continuing her on treatment that wasn’t working.
By 2004, a test found that she had drug-resistant TB. Fernando didn’t look ill. But she felt horrible. She had regular episodes of hemoptysis, or coughing up blood from her lungs or trachea. Each time, her family rushed her to the hospital.
When someone has drug-resistant TB, doctors put them on what is called second-line drugs, or drugs that hadn’t been used for decades because of serious side effects. Fernando’s drug combination therapy caused her hearing loss in both ears. One of the drugs made her itch horribly. A second caused her to vomit often within a minute of swallowing the pill. A fourth turned her skin and her tears and her sweat a bright color of orange. At one point, her condition deteriorated so much that doctors put her in the Quezon Institute in Manila; her family couldn’t see her because of the risk of infection.
She finished the first 18 months of treatment, but six months later a test found she was positive again for TB. She started a second 18 months of treatment and a surgeon cut out part of her right lung. She finished the treatment earlier this year and so far, so good.
“I’ve always asked why did it happen to me,” Fernando told me in the house of her aunt outside of Manila. “I always took the drugs religiously, but I was not getting well. My grandmother always told me to never stop praying and that we were all given our own cross to carry and you cannot choose what cross you have to carry. If the Lord says, ‘You carry that cross,’ you carry that cross.”
Fernando said she has learned many lessons. She knew that working was important to her so she started a job as an accountant at the Tropical Disease Foundation, where she was a patient; she recently was hired by Management Sciences for Health to be an accountant on its TB project.
She learned that she had to fight for herself. “You must take an effort to learn your disease,” she said. “You need to ask the right questions. You always are dealing with people who shy away from her for fear of getting infected. This happened when I knew I was not infectious. But still I couldn’t get upset. It’s not my problem.”
She has a boyfriend, a nurse, John Stuart Pancho, 26, who met her during treatment. Many of her friends have married and started to have families, but Fernando wants to go slowly.
“It’s only now that I am starting to live,” she said. “I just want to enjoy life, enjoy my work, and enjoy my family. There’s no need to hurry.”