22/05/07 - Representatives of 50 European Red Cross and Red Crescent Societies, gathered in Istanbul for a regional conference, heard a vibrant plea for reviving real communication between health care workers and tuberculosis patients to ensure treatment completion. In his address, Paul Thorn, 37, called for closer collaboration with Red Cross and Red Crescent Societies as major partners active at the community level in TB care and prevention.
His speech also included excerpts from a TB sanatorium guidebook which appears to cover everything: how to air the rooms and wash the floors, how often to let patients go for a walk, a list of games, including chess and dominos. "What it does not explain," remarked Paul, "is how to change the carers' attitude from 'take your tablets and do what I say', to 'let's see what we can do together to fight the illness'."
Paul is a coordinator of The Tuberculosis Survival Project, an initiative he launched on World TB day, in March 2006. The project aims to provide information about TB and multidrug-resistant tuberculosis (MDR-TB), to offer personalized support to patients and to encourage those who have been cured of tuberculosis to help those who have undertaken TB treatment.
At the age of 19, he was diagnosed HIV-positive, and three years later, he was infected with the MDR form of tuberculosis. Paul managed to survive. He does not speak much about his illness, but he remembers well the grim months spent in a London TB hospital. What is important for him now is to protect people from the suffering caused by the fear, the loneliness and the isolation of TB hospital wards today.
"HIV struck me like a death sentence," he recalls, "but I never felt so lonely in my life as several years later in a TB ward when, for three long months, I did not see people's smiles as their faces were covered with protective masks and my communication with nurses was limited to a few dry sentences a day."
For 15 years Paul Thorn has been fighting to stop the spread of AIDS and TB. He says that it is still difficult for TB patients to be heard. "Today, it is not only the poorest and the marginalized who turn up on hospital beds with tuberculosis, but also the intellectuals and the eloquent." He pragmatically suggests that their voice can be an effective tool in the fight against the illness.
Modern medical science knows how to cure TB, however the problem lies with the length of the treatment and the degree of commitment required to complete it. "It is an old, very old disease, but it is still with us in the 21st century," he notes.
Completion of treatment is essential not only for patients to be cured, but also to prevent the development of multidrug-resistant tuberculosis (MDR-TB), a form of the disease which is much more difficult and expensive to treat. Countries in central and eastern Europe have rates of MDR TB that are three times higher than in any other region of the world. In 2005, there were 445,000 new TB cases and 66,000 deaths in Europe. Of these new cases, an estimated 14,000 occurred in HIV-positive adults, who are particularly vulnerable to the disease because of weakened immune systems.
Paul Thorn has written two books, Positive careers and a TB treatment handbook to help people cope with the difficulties they can encounter during their treatment course. His participation in the Stop TB Partnership in Europe (*), as a member of the Executive Committee, will help him spread his ideas to support people living with tuberculosis and HIV. Paul's aim is to restore real communication between health workers and their patients. His approach is that social problems cannot be regarded as personal when they affect whole communities.
Red Cross and Red Crescent community-based programmes are proven to be effective in global TB control because they give marginalized and vulnerable groups access to health care, and because they ensure higher treatment completion through a "personalized" approach to the patients, which includes food and psychosocial support. But Paul calls for more - he calls for partnership and for inclusion.
"I am here today to encourage Red Cross and Red Crescent Societies to work more closely with us. I am not asking for money. Open your house for us, help us meet each other, nurture us so that we have a united voice in the community. Help us by working with us, not only for us," he concluded.
(*) In October 2006, the International Federation initiated a new alliance to respond more effectively to the tuberculosis epidemic in the region. The Stop TB partnership for Europe brings together the WHO and 30 leading agencies and NGOs and advocates for more robust measures against the epidemic. According to the WHO Global TB Control Report for 2007, the European region has the lowest detection rate of infectious TB cases and the highest level of treatment failures.
Margarita Plotnikova, Istanbul. International Federation of Red Cross and Red Crescent Societies
