11 August 2011

Dr Shahidul Islam, an MSF TB doctor, examines a patient on the DR TB ward in the national TB centre.
Photo: Bruno De Cock

So the blogs are an attempt to hear from patients about what they need. "I don't think MSF has all the answers on how to set up the services, but if we are going to have these dialogues, we should allow patients to have their voice.

"It is a platform for patients to say what it means for them."

New drugs needed

There is another big issue too - the need for new and simpler drugs. Churchill Opera, a blogger from Uganda, says he is on 18 drugs in the morning and eight more at night - a total of 26 pills a day. And he doesn't find them pleasant:

"The drugs are very strong for me. I have been experiencing some side-effects, like joint pain, and then burning pain in both legs and gastric pain. Sometimes I hear some sounds that I don't know, like a "vvvrrr", in my head, and my ears.

"There was a time also when I had to be admitted to the hospital. I was so depressed, it was like I was going mad. They told me that this was also one of the side-effects. I didn't know. They stopped one of the drugs, one of the many drugs I was taking, and I got better."

There are drugs that will cure MDR-TB, but they don't cure everybody. It takes up to two years and there are indeed a lot of side-effects, confirms du Cros.

"We need new drugs and different regimens and the scaling up of better diagnostic tests. We need to find out what financial and what nutritional support is required by patients, which may be different in India from in Uganda."

A major problem is the need for sophisticated labs that can confirm MDR-TB from tests. MSF's doctors have shipped out samples from the Democratic Republic of Congo all the way to Europe to confirm the disease in patients.

In 2008, the last year for which there are good figures, there were 440,000 new cases of MDR-TB in over 45 countries. That will be steadily rising. It is certainly time to hear from those who are affected.

For more information visit  Christiaan Van Vuuren's blog: The Story of The Fully Sick Rapper