More than seventy people from across the country spoke about rights and responsibilities to improve tuberculosis (TB) and HIV responses on 24-25 November 2009 in Jakarta, Indonesia. From a 13 year old ex-patient (she was a TB patient when she was 9) to the representative from sub-directorate of National TB and HIV programmes had an open consultation to raise the right of access to care. The Director of HIV programme in Indonesia acknowledged the problem and committed to making the rights and responsibilities framework a reality.
Yoana Anandita from National TB Programme (NTP) in Indonesia who was speaking at the Advocacy, Communications and Social Mobilization (ACSM) meeting before the 40th Union World Conference on Lung Health opens in Cancun, Mexico, reaffirmed the genuine engagement and consultation this roadshow provided between different stakeholders.
"The Roadshow rolled in Indonesia raising rights and responsibilities for HIV and TB up the agenda, down in the streets of our communities and on high in the towers of power. We invited diverse people to consult, discuss, write, plan, agree and act - to move forward locally in global common cause" said Case Gordon, President, World Care Council (WCC).
The World Care Council (WCC) has been a global leader in driving forward a Rights and Responsibilities approach to health, advocating that people suffering from infectious diseases have specific universal rights to quality care, and have an individual responsibility to prevent the spread of illness to others. Health providers, both public and private, have the responsibility to provide consumers with the highest possible quality of care, and the right to have the appropriate tools to do so.
The methodology of joining the human right to life through access to healthcare with the individual duty to act responsibly in face of a public health threat is one that allows people with TB, HIV and other communicable diseases to forge partnerships with care providers and programs. This relationship is a mutually beneficial one - people in need can work with providers to access better care and providers can work with patients to better succeed in managing the pandemics that impact on the populations they serve.
As both providers and people with the diseases need to know their rights and responsibilities, the World Care Council has developed innovative tools to reach a broad based agreement on what these are. Using its 'Outreach for Input' system of consultation, the WCC has produced two editions (2006 and 2009) of the Patients' Charter for Tuberculosis Care (PCTC) with the inputs of over one thousand people who have direct experience of the disease on four continents. The PCTC has been incorporated into the Strategies of the WHO and most of the governments of high burdened countries, and is the tandem document to the International Standards for Tuberculosis Care. These two guidelines form the basis of the Patient Centered Care approach to TB treatment and prevention, and serve as levers for change from decades of poor programmatic TB 'Control' to quality TB 'Care', a major step forward for both people with the disease and the communities devastated by it.
The Rights and Responsibilities Workshop Roadshow 2009 which took place in Jakarta, Indonesia during 24-25 November 2009, is part of a series of public meetings and workshops in nine cities in Africa and Asia highly burdened by the TB and HIV pandemics.
The drive for Rights and Responsibilities is a core activity for the World Care Council, and has shown itself to be an effective tool for raising the standards of care on the ground. As it is powered by people with the diseases, it embodies the principles of greater and more meaningful involvement of TB Patients and PLHIV (GIPT and GIPA). Turning principles into practice, the drive for Rights and Responsibilities is rolling out the roadshow on the streets.
Contributed by: Bobby Ramakant