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 transmission
of HIV 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.
|
 |
 |
|
|
Paul
Thorn, 37, is a coordinator of The Tuberculosis Survival
Project, an initiative he launched on World TB day, in
March 2006. In his address, he called for closer collaboration
with Red Cross and Red Crescent Societies as major partners
active at the community level in TB care and prevention.
(p15762)
|
|
|
|
|
|
News
