The Patients' Charter of the Tuberculosis Community (4)
In response to the posted question from George Kent
<firstname.lastname@example.org> "why should there be a distinct charter for
any particular disease?":
We are a group of people who are living with, and hopefully sur-
viving, tuberculosis. A highly contagious (airborne) disease
that killed some 2 million people last year. Two million the
year before, and the year before that, etc. TB has been mass
killing for hundreds if not thousands of years. Some sixty years
ago they said that the cure had been found, which in reality has
meant that those with resources live, and the poor die. Once the
rich were protected, they seem to have forgotten about the oth-
ers, illustrated by the fact that no new anti-TB drugs have been
developed in fifty years. Probably some 100 million deaths ago.
As TB is a disease which affects the most vulnerable and disen-
franchised populations, our rights have never been important and
our voices never heard. Today, two deadly factors are beginning
to raise the stakes: HIV/AIDS and MDR. TB is the biggest killer
of those living with HIV, and the co-infection TB-HIV is now
pandemic in Africa and large parts of Asia; multi drug resis-
tance (MDR-TB) means that the old drugs do not work and the per-
son dies slowly, painfully, and often in isolation. Most health
systems don't even try to treat MDR patients - they're consid-
ered write-offs. There are some 700,000 to a million people with
MDR today, increasing each year, who have no hope, no voice, and
no rights. (Nor any media, rockstar or hollywood friends).
Learning from the HIV experience, we are now trying to build
'community' as a step towards organising ourselves to demand
better treatment, new drugs, diagnostics and vaccines that work.
We also demand some dignity, and some basic human rights in the
face of stigma and discrimination arising from our long margin-
alisation. A good part of this stigma has historically been
passed down through the traditional medical establishment, who
has too often seen the TB patient as a burden and a problem for
public health (and not profitable to treat).
The Charter is one of our first tools to address the silence in
which we suffer. Tuberculosis is the killer loose in our commu-
nities, and we seek ways to stop the death toll and devastation.
By drafting a document that outlines our basic Rights and Re-
sponsibilities, and that is endorsed and distributed globally
through the WHO and its partners, we are beginning to build some
of the foundations for change to occur.
In response to "Why have a separate charter for any particular
ailment?": The many people who are helping to draft the next
version write not for an "ailment", but for the human rights and
responsibilities that are specific to their needs. The Patients'
Charter of the Tuberculosis Community is the synthesis of val-
ues, principles, and aspirations that are widely shared by peo-
ple infected or affected by TB, TB-HIV, and MDR-TB in all re-
gions of the world. It is the standard of the Rights and Respon-
sibilities, for and by those living with the diseases, which
builds community amongst those most affected. People, not ail-
ment, centered. Finally, I think that the Denver Principles of
1983 also serve as a response to the question.
So, we welcome your comments and input. It helps us all towards