As the international community marks World TB Day on 24 March, the International Federation of Red Cross and Red Crescent Societies (IFRC) is calling for more communication activities around tuberculosis, especially for those who are affected by stigma and discrimination among their own community. Jean-Luc Martinage asked British TB activist Paul Thorn to explain why there is a need for more community-based support programmes such as the ones implemented by Red Cross and Red Crescent volunteers.
Why did you decide to advocate on behalf of people with TB?
I had already been working as an HIV activist for a peer-led organization a few years before developing multi drug-resistant tuberculosis (MDR-TB) in 1995. I was infected with MDR-TB whilst a patient on an HIV unit in a West London Hospital. It was the first outbreak of its kind in the UK and there was no protocol for dealing with the situation.
My main motivation to advocate for people with TB/MDR-TB is that the UK HIV community and non-governmental organizations (NGOs) panicked and cut me off from using their services and were ignorant about TB/MDR-TB and the impact that it has on people who are HIV-positive. They just didn't see it as their problem. I determined to try and change this.
What are the main problems TB patients need to face besides treatment itself?
The problems are that people with TB/MDR-TB primarily face stigma from society at large. The medication can make you feel very sick. Even looking at the tablets before I took them I was retching to be sick and sometimes was. Then there is the economic impact, not being able to work either for feeling too ill, or being fired from your job because of having the illness. The psychological impact can also be devastating and there seems to be little provision to help people through the mental and emotional aspects of having TB/MDR-TB.
What do you think can be done to improve conditions for people with TB? How are you helping them?
We must not think of people with TB/MDR-TB as statistics. They are all individuals who often have people who love them and care about them. It is a human problem and requires a compassionate human response. It is a tall order, but until the issues of world poverty, poor housing, hunger, universal access to medication for HIV (and indeed TB/MDR-TB) are properly addressed by all countries of the world then I worry about what impact we can really make.
I try to help other people with TB/MDR-TB by offering the hand of friendship. To make people with TB/MDR-TB aware that they are not alone, that it is curable and to help them with information and their adherence. The organization that I run - called the TB Survival Project (www.tbsurvivalproject.org) - is my main tool for doing this. I continue to write a lot, creating books and using any other channels I can such as the media to get my message across. I have some funding from the Lilly MDR-TB Partnership which makes my work possible. I try and speak up as much as I can for people with TB/MDR-TB. Although I am not an elected representative or formal ambassador for TB, I try to speak from the heart and my own experience in the hope that people listening will connect with it at an emotional level. My experience is that if you can do this you can create change.
How serious is the situation in terms and stigma and discrimination against people with TB? What can be done to make things better?
That is a broad question. It depends where you live in the world. For example, some women are too scared to seek medical help for fear that they will be rejected by their husbands. Others are forced from their jobs, unable to provide for their families. For people who live in small communities, rather than the anonymity of the cities, it can be very hard. The bottom line is that stigma is counter-productive. It stops people from being tested and treated for TB/MDR-TB for fear of what others may think.
I think that the answer to making things better is that we need to re-brand the disease. I think money spent with a top advertising agency would be money well spent. People need to think of TB/MDR-TB in the same way that they do about cancer. The biggest challenge is that cancer isn't infectious, which makes it more acceptable. As human beings we have a natural fear of disease as a survival instinct and defence mechanism. We need to get across what can be done about TB/MDR-TB, that it is a curable disease when diagnosed and treated properly like many other infections.
Do you think that more community-based action such as the ones conducted by Red Cross Red Crescent volunteers should be encouraged?
Absolutely, the great thing about the Red Cross Red Crescent volunteers is that they are a motivated grassroots network where TB/MDR-TB care, control and cure actually happens at local level. They understand the issues that the people around them really face. It would be good to see more people who have had TB/MDR-TB recruited as volunteers for organizations such as Red Cross Red Crescent.
[ Any views expressed in this article are those of the writer and not of Reuters. ]
A patient suffering from Tuberculosis rests inside a hospital in Agartala, capital of India's northeastern state of Tripura, March 24, 2009. Researchers who have been trying to design new drugs to ...
