Is MDR-TB medical manslaughter?

Slow pinful death: MDR-TB There is a young teenage woman in India gasping for air today — she is dying, slowly and painfully. For five years she has battled against multidrug-resistant tuberculosis (MDR-TB), which means that the bacteria that cause her tuberculosis (TB) are resistant to the antimicrobial drugs used to cure the disease. Every day, the bacteria are consuming or eating away her lungs, and life.

She has been debilitated by the MDR-TB, and has suffered from the permanently disabling effects of highly toxic second-line antibiotics used in the hope of a cure, only to find that these drugs had no effect on the resistant bacteria. These chemo-pharma drugs are over fifty years old, and most have been ‘retired’ due to dangerous toxicity. Now, the first new drug specifically for MDR-TB, bedaquiline, has been developed, but this poor teenager is being denied access to it by the Government of India due to “politics and protocol”. Without this new antibiotic, she will soon join the 250,000 other Indians that needlessly die each year from TB, which is classified as a ‘curable’ disease. For decades, far more people die from TB in India than any other country, and it now leads the world in MDR-TB cases and deaths although all figures for drug resistance are estimates or guesswork, often proved to be wrong later.

Around the world, an estimated 580,000 people get MDR-TB each year, but only 20 per cent are treated. For over half of these 120,000 patients, the treatment is not effective and they will die. As antibiotic resistant strains of the disease grow and spread, new medical classifications are being announced – there is now extensively drug resistant tuberculosis (XDR-TB) which is even more resistant, and more lethal than MDR-TB.  The bottom line is that whatever the terminology, untreated or poorly treated drug resistant TB kills some half a million people every year.

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We’re back on track — All aboard!

On track towards our rightsAfter a short delay, we’re back on track. The engine is warmed-up and ready to go, and the crew is helping folks into their seats. The call “All Aboard” echoes through the station… here we go!

The IMAXI Cooperative and a dozen friends and allies have been preparing a special research and development project on the participation in the decision making processes in global health governance of the people most affected by these decisions – those living with life-threatening diseases and disabilities, the marginalised, impoverished and vulnerable. We believe that the community of people around the world that have been ‘left behind’ and left out of discussions and decisions about their well-being should have not only a ‘voice’, but ‘seats at the tables’ of policy-makers.

This project is called “All Aboard”. We plan to first assess the current state of participation and then to publish the findings in a special edition of the leading peer-reviewed journal Global Health Governance. The following abstract has been accepted by its editors, Dr. Benjamin Mason Meier and Prof. Larry Gostin.

This train will leave no one behind: Meaningful participation and accountable representation of communities in global health governance
The study will report on an assessment of the current state of the implementation of the Right to Participation by the key institutions that govern global health. It identifies obstacles to, and opportunities for the advancement of the meaningful participation and the accountable representation of those most affected by the decisions and policies of these bodies. As the World Health Organization (WHO) is mandated by its Constitution “to act as the directing and co-ordinating authority on international health work”, the paper will place particular attention on WHO policies and practices, while providing a comparative study of other health-related UN agencies, as well as other multilateral institutions and major foundations with substantial influence on global health governance. The paper arose through a participatory research approach which brings together a range of academic disciplines as well as public health officials and community activists to inform a broad understanding and dialogue on the benefits, and best practices in the implementation of the right of participation in global health governance. Its methodology includes interviews with key ‘actors’ and document reviews covering the period of 2000 to the present. The paper provides a base line for annual ‘report cards’ on the progressive application of the meaningful participation and accountable representation of affected communities in global health governance—which the authors argue, is necessary to better assure that no one is left behind.

All Aboard’ is now ready to get underway on a fast track. Over the next one hundred days the distance between exclusion and inclusion will be covered by our research. We will then apply the research findings to drive a dynamic advocacy campaign — heading straight towards our destination: meaningful participation and accountable representation of the voiceless.

Come On Board! Everyone is invited and very welcome to help power this participatory project along its route.
Contact us.

See also:
Destination: Participation R&D
Global Alliance for Meaningful Participation and Accountable Representation
(GAMPAR)