By Sarah Sedghi
Medical research and advocacy groups are calling for a greater focus on diagnosing what they say is the “neglected disease” of tuberculosis.
Groups gathered in Canberra today for the launch of a forum seeking to advance the way the disease is diagnosed and treated.
Among the group was Louie Zepeda, a tuberculosis survivor from the Philippines who spoke about her experiences.
Ms Zepeda said patients would benefit from better ways of diagnosing and treating the disease.
“It changed my life,” she said. “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, I 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.”
Maree Nutt, chief executive of Results International Australia, an anti-poverty group which also engages in health advocacy, said much of the world still used an outdated diagnostic test for tuberculosis (TB).
“For most of the world, the TB diagnostic test is over 120 years old,” she said.
“And one of the things that we’ve seen and we’ve been hearing, Louie’s story as she’s been telling it, [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.”
Ms Nutt said too many people were affected by tuberculosis.
“The death toll is far too high,” she said.
“1.5 million people dying from TB every year, and 9 million people being infected each year.”
Doctor says it’s ‘unacceptable’ test over 100yo still used
Dr Mary Moran, executive director of independent research organisation Policy Cures, agreed it was time to change how the deadly disease was managed.
“It’s actually completely unacceptable that you would expect someone to be diagnosed with a test that’s over 100 years old, [and] that doesn’t really pick up TB in children, in people with AIDS, and just in many normal TB patients,” she said.
“The vaccine is increasingly ineffective, most people with TB have already had the vaccine and it hasn’t worked.
“What we would like to see is a treatment that respects patients better, respect for the fact that they have lives to live and livelihoods to earn, and they can’t spend years taking treatments that are so old.”
More than half of the world’s new cases of tuberculosis affect Australia’s near neighbours in South East Asia and the Western Pacific, including Papua New Guinea and Timor Leste.
Associate Professor David Anderson, deputy director of the Burnet Institute, which focuses on medical research and public health, said it was critical patients were diagnosed and treated effectively.
“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,” he said.
He says the longer a patient goes undiagnosed, the more likely it is they will put others at risk of the infectious disease.
“During all of that time, because it’s spread principally by coughing, they’ll be infecting others,” he said.
“And that’s one of our biggest challenges, how to identify people early before they have the chance to infect too many other people.”
He also said the fact that lengthy treatments can affect people’s livelihoods was also concerning.
“It’s estimated that in some countries that it is prevalent, it really is one of the major factors that keeps people in poverty,” he said.
“Because it can really take half the income of a family, with a major breadwinner … unable to work because they’re too sick and the cost of treating it.”
It is Ms Zepeda’s hope that tuberculosis will not be a problem for her daughter’s generation.
“I am actually now a mum. I have a one-year-old daughter and I almost went infertile, because of the medications,” she said.
“But I want to make sure that I’ll be confident, you know, if ever I’ll die young … she’s going to be secure. That she’ll be able to have a world free of TB.”