PHA-Exchange> "Pills not prison - our only crime was breathing. Yours may beviolating human rights."

Fri Jan 26 09:12:55 PST 2007

From: loud 'n clear 

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

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 in 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, Neichu Angami, Carol Nyirenda, 
Victory Brahmana, Erica Blair, Steve Amolo, 
Pervaiz Tufail, Fermina Barajas, Mauricia Corona, 
Razza Charpé, Alberto Colorado, Lawrence Monteiro, 
Bernard Hopi, Bertrand Kampoer, 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] 

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