[e-drug] Pills not prison - our only crime was breathing...

["loud 'n clear" <voices@tbtv.org>]

E-DRUG: Pills not prison - our only crime was breathing...
-------------------------------------------------

Open Letter from TBTV.org, an NGO representing people with TB, to the South African Minister of Health

"Pills not prison - our only crime was breathing.  Yours may be violating human rights."
25.01.07    

Your Excellency Dr. Manto TSHABALALA-MSIMANG
Minister of Health
Private Bag X399
Pretoria 0001  South Africa

Madame Minister,

As your MOH website biography highlights your 'greatness', we turn to  
you for the leadership cited as one of your qualities.  Specifically,  
we seek your immediate intervention in the XDR / MDR-TB emergency in  
Southern Africa.

The recent reckless propositions to forcibly incarcerate and isolate  
our comrades suspected of having this extremely drug resistant strain  
of tuberculosis requires a statement from you before the recent gains  
made in combatting TB and TB-HIV in the region are lost, and human  
rights further violated.

We are an international organization of people with tuberculosis (TB,  
TB-HIV, MDR/XDR), either on treatment or former patients who  
understand the painful horror of the disease, the long often toxic  
treatment, and the stigma, loneliness, and fear that accompany it.   
We know well about the seriousness of spreading the infection, and  
the importance of early detection and adherence. We drafted, with  
many of our peers, the rights and responsibilities found in the  
Patients' Charter for Tuberculosis Care, adopted by WHO as an  
essential element of the Stop TB Strategy for 2006-2015.

Access to drugs, diagnostics and dignity, not death row in isolation.

Careless words and reporting from so-called experts in South Africa  
concerning XDR has begun a process of increasing stigma and  
discouraging people to seek testing for tuberculosis and/or HIV for  
fear of being forced into isolation with no rights, nor any hope for  
appropriate care if needed.  Although the highly infectious nature of  
the disease warrants extreme precaution, creating an environment of  
'panic in the streets' only increases the problem. The reason there  
are XDR and MDR outbreaks are because the TB program has not been as  
effective as it could be - case detection is shamefully low and the  
high drop out rates are indicators of programatic failings.  Lack of  
diagnostics, drugs, and effective management are not the fault of  
patients. The cause of the problem is how people with TB and TB-HIV  
are cared for. Criminalizing those unfortunate enough to breathe at  
the wrong moment is both medically and morally wrong.

There are other methods of dealing with XDR / MDR than what is being  
recklessly proposed in South Africa, and the means to scale up TB-HIV  
programs are available. The WHO has been working late into the night  
putting into place mechanisms to help Southern Africa confront the  
problem, as have a number of the members of the Stop TB Partnership.  
Civil society organizations and activists in many countries are very  
concerned, and solidarity with the struggle you face is growing quickly.

We call your attention to the statement from WHO yesterday (attached  
below), which outlines the human rights considerations.  Guided by  
the Siracusa Principles, the WHO states that forcibly isolating  
people with drug resistant tuberculosis must be used only as the last  
possible resort when all other means have failed, and only as a  
temporary measure.

If it can be proven through evidence-based analysis that forced  
isolation is temporarily required, patients must be provided with the  
quality care that includes, among other rights, free access to all of  
the second line drugs, laboratory support including effective drug  
sensitivity testing, social support, and be treated with respect and  
dignity.  Patients must be informed clearly in their language of  
their rights and responsibilities, as outlined in the Patients'  
Charter for Tuberculosis Care. Independent monitoring is required to  
assure that the human rights of the person are not violated.  Health  
authorities and providers choosing the extreme measure of involuntary  
treatment should only do so if they can assure that they endeavor to  
meet the best practices of the International Standards for  
Tuberculosis Care, also an essential element of the Stop TB Strategy.

Scale-up programs not lock-up patients.

We call on you, Your Excellency, to issue a policy statement that  
leads to massively scaling-up the response to the TB Emergency in  
Southern Africa, and protects the human rights of people with  
tuberculosis or suspected of having the disease. Your leadership now  
would put a stop to reckless rumors and recommendations that will  
only increase the suffering of people with TB, their families, and  
their communities. Engaging the resources needed to confront an  
emergency and protecting human rights are two of the components of  
the 'greatness' that is now urgently needed.

We thank you for your consideration, and your support in the global  
struggle to Stop TB.

Maxime Lunga, Carol Nyirenda, Steve Amolo,
Victory Brahmana, Erica Blair, Bertrand Kampoer,
Pervaiz Tufail,  Fermina Barajas,  Mauricia Corona,
Razza Charpé, Alberto Colorado,  Lawrence Monteiro,
Neichu Angami, Bernard Hopi, Lusiana Aprilawati, Case Gordon...

TBTV
www.tbtv.org

--------------------
WHO guidance on human rights and involuntary treatment for XDR-TB

24 January 2007.
WHO places prevention and care of XDR-TB as a priority through the  
strengthening of basic TB control and the necessary interventions to  
cure existing cases. This includes strengthening political will  
throughout affected countries to reduce the burden of TB, rapid  
accurate bacteriological diagnosis, a secure supply of high quality  
drugs, supervised and standardised treatment, and recording of the  
outcome of every single patient at the end of treatment. It also  
includes ensuring that the capacity to identify and treat drug- 
resistant TB is in place, with a secure supply of second-line anti-TB  
drugs required for treating multidrug-resistant TB obtained through  
the Green Light Committee (in resource-limited settings)(1), as well  
as implementing good infection control procedures.

These measures are currently the best approach to the prevention and  
care of XDR-TB and were listed among the recommendations supported by  
international health experts at the first meeting of the WHO Global  
Task Force on XDR-TB in October 2006(2).

WHO's position with respect to the legal and ethical issues  
surrounding compulsory TB treatment was published in 2001(3) with the  
specific purpose of ensuring prevention and control is strengthened  
within a legal and human rights' framework. The publication of a PLoS  
Medicine journal report(4) has highlighted again the issues around  
compulsory treatment, particularly in relation to drug-resistant TB.

WHO strongly recommends that governments must ensure, as their top  
priority, that every patient has access to high quality TB diagnosis  
and treatment for TB and drug-resistant forms of TB. It also fully  
supports the rights and responsibilities of TB patients as  
recommended in the Patients' Charter for TB Care(5).

In this regard, if a patient wilfully refuses treatment and, as a  
result, is a danger to the public, the serious threat posed by XDR-TB  
means that limiting that individual's human rights may be necessary  
to protect the wider public. Therefore, interference with freedom of  
movement when instituting quarantine or isolation for a communicable  
disease such as MDR-TB and XDR-TB may be necessary for the public  
good, and could be considered legitimate under international human  
rights law.

This must be viewed as a last resort, and justified only after all  
voluntary measures to isolate such a patient have failed.

A key factor in determining if the necessary protections exist when  
rights are restricted is that each one of the five criteria of the  
Siracusa Principles(6) must be met, but should be of a limited  
duration and subject to review and appeal. The Siracusa principles are:

     * The restriction is provided for and carried out in accordance with the law;
     * The restriction is in the interest of a legitimate objective of general interest;
     * The restriction is strictly necessary in a democratic society to achieve the objective;
     * There are no less intrusive and restrictive means available to reach the same objective;
     * The restriction is based on scientific evidence and not drafted or imposed arbitrarily i.e. in an unreasonable or otherwise discriminatory manner.

Responsibilities of TB treatment-providers to their patients are detailed in The International Standards for Tuberculosis Care(7).

Footnotes

(1) Instructions for Applying to the Green Light Committee for Access  
to Second-Line Anti-TB Drugs (WHO, 2006)
http://whqlibdoc.who.int/hq/2006/WHO_HTM_TB_2006.369_eng.pdf [pdf 404kb]

(2) Report of the meeting of the WHO Global Task Force on XDR-TB  
(WHO, 2006)
http://www.who.int/tb/xdr/globaltaskforcereport_oct06.pdf [pdf 608kb]

(3) Good Practice in Legislation and Regulations for TB Control: An  
Indicator of Political Will (WHO, 2001)
http://whqlibdoc.who.int/hq/2001/WHO_CDS_TB_2001.290.pdf [pdf 163kb]

(4) Medicine journal (Public Library of Science, 22 January 2007)
http://medicine.plosjournals.org/perlserv/?request=get- 
document&doi=10.1371/journal.pmed.0040050

(5) The Patients' Charter for TB Care (World Care Council, 2006)
http://www.who.int/tb/publications/2006/istc_charter.pdf [pdf 1.01Mb]

(6) Siracusa Principles on the Limitation and Derogation Provisions  
in the International Covenant on Civil and Political Rights (United  
Nations, Economic and Social Council, 1985)
http://www1.umn.edu/humanrts/instree/siracusaprinciples.html

(7) International Standards for TB Care (TB Coalition for Technical  
Assistance, 2006)
http://www.who.int/tb/publications/2006/istc_report.pdf [pdf 1.99Mb]