SARAH SEDGHI: Louie Zepeda was just 25 years old and working as an architect in the Philippines when she contracted multi-drug resistant tuberculosis.
Her symptoms began late in 2006 and she was diagnosed weeks later.
LOUIE ZEPEDA: It changed my life. I’m now blind, so as an architect, I need to change my career path. At the same time, I experience a lot of discrimination, lost a lot of friends, and now I have a new role in life: to be an advocate for those with tuberculosis and also disability.
SARAH SEDGHI: Louie Zepeda is in Canberra today to speak at the launch of a tuberculosis forum.
The forum is bringing together medical researchers and academics who want to advance how the illness is diagnosed and treated.
Maree Nutt is the chief executive of the Australian branch of Results International, an anti-poverty group which also engages in health advocacy.
MAREE NUTT: Despite being an ancient disease that has been around for thousands of years, we still have very old fashioned and largely ineffective tools in many ways to treat tuberculosis.
And the death toll is far too high – 1.5 million people dying from TB every year, and 9 million people being infected each year.
SARAH SEDGHI: She says the way tuberculosis is identified and treated is outdated and unfair to the patient.
MAREE NUTT: For most of the world, the TB diagnostic test is over 120 years old. And one of the things that we’ve seen and we’ve been hearing – Louie’s story – is the terrible side-effects that these drugs have for TB.
Louie fortunately was cured, but as a result of the toxic treatment that she was forced to take, she lost her sight.
Now, that’s because the drugs really haven’t progressed for over 60 years.
SARAH SEDGHI: Dr Mary Moran, the executive director of independent research organisation Policy Cures, agrees it’s time to change how the deadly disease is managed.
MARY MORAN: It’s actually completely unacceptable that you would expect someone to be diagnosed with a test that’s over 100 years old, that doesn’t really pick up TB in children, in people with AIDS, and just in many normal TB patients.
The vaccine is increasingly ineffective – most people with TB have already had the vaccine and it hasn’t worked.
SARAH SEDGHI: More than half of new tuberculosis cases affect South-East Asia and Western Pacific, including Papua New Guinea and Timor Leste.
Associate Professor David Anderson is the deputy director of the Burnet Institute, which focuses on medical research and public health.
DAVID ANDERSON: It’s absolutely deadly without treatment, and if you have drug-resistant TB and it’s treated with the wrong drug, that will also kill you.
And it’s estimated that in some countries that it’s prevalent, it really is one of the major factors that keeps people in poverty. Because it can really take half the income of a family, with a major breadwinner being out of work, unable to work because they’re too sick and the cost of treating it.
SARAH SEDGHI: He says not being able to diagnose tuberculosis early puts the patient and others at risk.
DAVID ANDERSON: A lot of them will not be diagnosed with their TB, or there’ll be a long delay before they’re diagnosed, and during all of that time, because it’s spread, principally by coughing, they’ll be infecting others. And that’s one of our biggest challenges, is how to identify people early before they have the chance to infect too many other people.
SARAH SEDGHI: Louie Zepeda says she hopes that tuberculosis won’t be a problem for her daughter’s generation.
LOUIE ZEPEDA: I am actually now a mum. I have a one-year-old daughter and I almost went infertile, because of the medications also. But I want to make sure that I’ll be confident, you know, if ever I’ll die young – I’ll die at a young age – she’s going to be secure. That she’ll be able to have a world free of TB.
MARK COLVIN: Tuberculosis survivor Louie Zepeda ending Sarah Sedghi’s report.
Interview broadcast by ABC PM and ABC Health News 23 March 2015