[afro-nets] The Patients' Charter of the TB Community

[Erika Blair <voices@tbtv.org>]

The Patients' Charter of the TB Community
-----------------------------------------
draft version 2.1: comments welcome

Greetings,

Following the call to 'Write Your Rights' four months ago, tu-
berculosis patients from four continents began drafting a Char-
ter of our Rights and Responsibilities. This is the first time
ever that people living with TB have come together from around
the world to document our concerns, and to begin to build 'com-
munity' amongst millions of fellow patients and their families
from mostly impoverished and marginalized populations. We have
been without a 'voice' for too long.

The Patients' Charter is being drafted in tandem to the develop-
ment of the new International Standards of Tuberculosis Care
(ISTC) which sets out medical recommendations for the treatment
of people with tuberculosis, or who may have TB. Taken together,
these two documents provide a comprehensive 'patient-centered'
approach to care for those with TB, MDR-TB, or TB-HIV coinfec-
tion.

The first draft of the Patients' Charter was a synthesis of com-
ments and inputs from a few hundred patients, reflecting our
hopes and aspirations for quality care for this disease which
kills two million of us each year, although a cure exists. Below
is the second version, now incorporating the ideas and feedback
of many more patients, as well as health professionals, activ-
ists, and concerned global citizens. This accessible process
reaches out worldwide, warmly inviting the input of anyone who
believes that people living with a communicable disease are
still people, and should have basic rights that are respected
while assuming their responsibilities within their communities.

Please send your comments or concerns for the forthcoming third
draft, and become a stakeholder in the TB Community.

With warm thanks,
Erika Blair
mailto:blair@tbtv.org


--

DRAFT 2.1: 11.11.05 Comments welcome, send to: voices@tbtv.org

Patients' Charter of the Tuberculosis Community

The aim of the Patients' Charter of the Tuberculosis Community
is to outline both the Rights and Responsibilities of those in-
fected by TB, and to empower people with the disease and their
communities through this knowledge.

Knowing and understanding these rights and responsibilities will
make the relationship with health care providers a mutually
beneficial one. The Charter sets out the ways in which patients,
the community and the health providers, both private and public,
can work as partners in a positive and open relationship with a
view to improving Tuberculosis care, and enhancing the effec-
tiveness of the health care process. The empowerment of patients
is essential to victory in the fight to stop TB.

The Charter, developed in tandem with the International Stan-
dards of Tuberculosis Care(1) to promote a 'patient-centered'
approach, bears in mind the principles of the United Nations
CESCR General Comment 14 on the right to health(2), the WHO Ot-
tawa Charter on health promotion(3), and the Council of Europe
Convention for the Protection of Human Rights and Dignity with
regard to the application of biology and medicine(4), as well as
other local and national charters and conventions. Upholding
these basic principles, rights and responsibilities allows for
all parties to be held more accountable to each other, fostering
a mutual interaction between patients, their families and commu-
nities, health providers and governments. The Patients' Charter
is a cooperative tool, forged from common cause, for the Tuber-
culosis Community.


PATIENTS' RIGHTS

1. To Care
a. The right to free and equitable access to tuberculosis care,
from diagnosis through treatment completion, regardless of re-
sources, race, gender, age, language, legal status, religious
beliefs, sexual orientation, culture or having another illness.
b. The right to receive medical advice and treatment which fully
meets the new International Standards of Tuberculosis Care, cen-
tering on patient needs, including those with MDR-TB or TB-HIV
coinfections, and preventative treatment for young children and
others considered to be at high risk.

2. To Dignity
a. The right to be treated with respect and dignity, including
the delivery of services without stigma, prejudice or discrimi-
nation by health providers and authorities.

b. The right to quality health care in a dignified environment,
with moral support from family, friends and the community.

3. To Information
a. The right to information about what health care services are
available for tuberculosis, and what responsibilities, engage-
ments, and direct or indirect costs, are involved.
b. The right to receive a timely, concise and clear description
of the medical condition, with diagnosis, prognosis (an opinion
as to the likely future course of the illness), and treatment
proposed, with communication of common risks and appropriate al-
ternatives.
c. The right to know the names and dosages of any medication or
intervention to be prescribed, its normal actions and potential
side-effects, and its possible impact on other conditions or
treatments.
d. The right of access to medical information which relates to
the patient's condition and treatment, and a copy of the medical
record if requested by the patient or a person authorised by the
patient.
e. The right to meet, share experiences with peers and other pa-
tients, and to voluntary counseling at any time from diagnosis
through treatment completion.

4. To Choose
a. The right to accept or refuse any medication, investigation
or treatment, and to be informed of the likely medical and
statutory consequences within the context of a communicable dis-
ease (5).
b. The right to a second medical opinion, with access to previ-
ous medical records.
c. The right to choose whether or not to take part in research
programs without compromising care.

5. To Privacy
a. The right to have personal privacy, dignity and religious and
cultural beliefs respected.
b. The right to have information relating to the medical condi-
tion kept confidential, and released to other authorities con-
tingent upon the patient's consent.

6. To Complain
a. The right to make a complaint through channels provided for
this purpose by the health authority, and to have any complaint
dealt with promptly and fairly.
b. The right to appeal to a higher authority if the above is not
respected, and to be informed in writing of the outcome.

7. To Organize
a. The right to join, or to establish, organizations of people
living with or affected by tuberculosis, and to seek support for
the development of these clubs and community based associations
through the health providers, authorities, and civil society.
b. The right to participate as 'stakeholders' in the develop-
ment, implementation and evaluation of TB prevention and control
policies and programs in local, national and international
health authorities (6).

8. To Security
a. The right to job security after diagnosis or the appropriate
rehabilitation after completion of treatment.
b. The right to nutritional security or food supplements if
needed to meet treatment requirements.


PATIENTS' RESPONSIBILITIES

1. To Share Information
a. The responsibility to provide the health care giver as much
information as possible about present health, past illnesses,
any allergies and any other relevant details.
b. The responsibility to provide information to the health pro-
vider about contacts with immediate family, friends and others
who may be vulnerable to tuberculosis or may have been infected
by contact.

2. To Follow Treatment
a. The responsibility to follow the prescribed and agreed treat-
ment plan, and to conscientiously comply with the instructions
given to protect the patient's health, and that of others (5).
b. The responsibility to inform the health provider of any dif-
ficulties or problems with following treatment, or if any part
of the treatment is not clearly understood.

3. To Defend the Community
a. The responsibility to defend the community by encouraging
others to seek medical advice if they exhibit the symptoms of
tuberculosis.
b. The responsibility to show consideration for the rights of
other patients and health care providers, understanding that
this is the dignified basis and respectful foundation of the TB
Community.

4. To be Empowered (Infectiously)
a. The responsibility of showing solidarity with other patients,
marching together towards cure.
b. The responsibility to share information and knowledge gained
during treatment, and to pass this expertise to others in the
community making empowerment contagious.
c. The responsibility to join in efforts to make the community
TB Free.

------------
1. Read the draft International Standards for Tuberculosis Care:
http://www.tbtv.org/pdf/InternationalStandardsofTBCare.pdf

2. United Nations CESCR General Comment 14 on the right to
health: http://www.tbtv.org/pdf/GeneralCommentNo.14.pdf

3. WHO Ottawa Charter on health promotion:
http://www.tbtv.org/pdf/ottawa_charter_hp.pdf

4. The Council of Europe Convention for the Protection of Human
Rights and Dignity/ biology and medicine:
http://www.tbtv.org/pdf/CoE_HRBioMed.pdf

5. Input concerning MDR specific issues (isolation, toxicity of
treatment, etc.) are welcome for the next draft.

6. The GIPT (Greater Involvement of People with Tuberculosis)
Principles and Practices are currently being drafted. Input and
ideas, welcomed, send to voices@tbtv.org The first global gath-
ering of TB Patients, (those who are living with TB, or have
been through treatment), is planned for early 2006. contact:
mailto:info@tb-active

Patients' Charter of the Tuberculosis Community / draft
2:11.11.05 Comments welcome: send to Erika Blair or Case Gordon
(mailto:voices@tbtv.org) - next draft out 12.12.05 version pdf:
http://www.tbtv.org/pdf/PatientsCharterDraft2_1.pdf
Special thanks to the ATS for supporting the drafting of the
Charter. http://www.thoracic.org