Philipp du Cros: The personal experiences of patients living with MDR-TB

Philipp du CrosWhat goes through a person’s mind when they are told they have multidrug resistant tuberculosis (MDR-TB) and face at least eight months of injections and nearly two years of medication? What are they thinking when they find out that the drugs they have to take will make them feel sick, and the side effects they will experience could range from severe to life threatening?

As a physician who has treated patients with MDR-TB in countries in Africa, Central Asia, and Asia, I could try to paraphrase some of what my patients go through. But never having taken the treatment myself, I don’t think I’m in the best position to do that. If we truly want to know what people go through, then we need to hear it from the people themselves.

That’s why Médecins Sans Frontières (MSF) has launched TB & me, a website that gives people with MDR-TB a chance to tell the world about their life, about their experiences with TB, and about what it’s like to live with a disease whose treatment regimen is out-of-date and whose drugs are old and toxic.

The statistics for MDR-TB make for depressing reading. There are an estimated 440,000 new cases of MDR-TB worldwide every year. The proportion of MDR-TB is highest in Eastern Europe and Central Asia, with an average of ten percent MDR-TB among new TB cases, and 38 percent among previously treated TB cases. MDR-TB is a form of TB that fails to respond to standard first line drugs. Not only is it difficult to diagnose and cure, but treatment is extremely expensive, typically costing several thousand US dollars per patient. Obviously, this is far out of the reach of most people in developing countries. The World Health Organization has estimated that US$ 7.1 billion will be needed between 2011 and 2015 to diagnose and treat 1.1 million patients worldwide by 2015.

Adding to these problems is the stigma associated with infection. This can deter patients from seeking treatment until it is too late, and discrimination in some settings can result in people being turned out of their homes and losing their jobs.

The TB & me website is a collaborative blogging project where patients from around the globe will have a platform to write regularly about their personal experiences of living with MDR-TB. The site currently features patients from Uganda, Swaziland, India, Australia, and the Philippines, with patients from countries in Europe to join in the near future. Readers will also have the chance to leave comments and questions, to which the patients will be able to respond.

The TB & me site aims to highlight that MDR-TB is a global problem that can affect anyone at any time, not just people in resource-poor settings. More effort is needed to raise awareness of the emerging threat of multidrug resistance. Diagnosing and treating MDR-TB promptly is paramount if we are to have any hope of controlling the spread of this deadly disease. But, most of all, TB & me aims to give people with MDR-TB a chance to tell us and the world what they think is needed to improve their care and services. With that in mind, it’s only right that I finish with some words from Grace, a blogger from Uganda:

“My advice to MSF and the organisations they are working with, or to any hospital in the world, is that they should sensitise their communities about HIV and TB, because TB is now a common disease in the world.”

If we are going to tackle and control this neglected disease, we would do well to heed her words.

Originally from Perth, Australia, Philipp is an infectious diseases specialist. He has worked in Tajikistan, Uzbekistan, Malaysia, India, Myanmar, Nigeria, Uganda, Tanzania, and Swaziland. Currently he works as head of MSF-UK’s Manson Unit.