Rio Communities’ Declaration

We, members of civil society, particularly people who are infected and affected by and engaged in the fight against TB, issue this Declaration to call urgent attention to the fact that:

• Despite being curable, each year TB kills nearly two million people worldwide.  Most TB programs wait for the sick patient to come to the clinic to be screened for TB.  This method of passive case finding causes delays in diagnoses and allows TB to be spread in the community.  The most commonly used diagnostic tool, the sputum smear test, only allows the detection of 45-65 percent of TB cases, so that even when patients undergo TB testing, they may not receive an accurate nor prompt diagnosis. This method is ineffective to detect active TB in patients with extra-pulmonary TB, patients co-infected with HIV (who have insufficient or no mycobacterium in their sputum) and of limited use in detecting TB in children, communities at great risk of death due to TB. 
• M/XDR TB is on the rise and receiving inadequate or inappropriate responses.  Diagnosis of Multi and Extensively Drug Resistant (M and XDR) TB requires even more sophisticated technology than ordinary TB. The lengthy wait for test results are of great concern and have a direct impact on mortality (especially in TB/HIV co-infected patients) and the quality of the treatment that is offered. Second-line drugs used against M/XDR tuberculosis must be taken for long period of time, are highly toxic, and can cause a range of serious side effects including hepatitis, depression hallucinations and dizziness. In 2007, less than 1% of the estimated MDR cases were treated according to WHO guidelines using the diagnostic tools and drugs available to treat M/XDR-TB.
• Mandatory hospitalization and clinic based TB treatment overburdens an already stretched health system and is not necessarily the most effective care for TB and even MDR-TB.  Community-based models of care in several countries around the world have demonstrated that they lead to better treatment outcomes, are cost-effective, and facilitate access to critical services.  Despite this evidence, too few national TB programs have taken up the models as the norm in TB and MDR TB care. 
• Responses to TB/HIV co-infection remain too weak.  Though TB continues to be the leading cause of death among people with HIV/AIDS, the WHO policies on TB/HIV collaborative services have not been consistently implemented, particularly those aimed at reducing the burden of TB among people with HIV/AIDS: 
  • In the past 15 years, new TB cases have more than tripled in countries with high HIV prevalence. People living with HIV/AIDS are more than 50 times likely to develop active TB in a given year compared with HIV-negative individuals.
  • While TB screening can detect risk of TB in people with HIV quickly and cost-effectively, only 630,000, about 2% of people living with HIV were reported as having been screened for TB in 2007.
  • Despite evidence that Isoniazid preventative therapy (IPT) can reduce by 60-80% the incidence of TB disease among people with HIV, only 0.1% of those eligible for IPT have received this lifesaving therapy.
  • Some TB medicines interact with HIV treatment, creating serious side-effects for patients co-infected with HIV that need to be properly monitored and managed.  
  • Even though health care settings pose a two-fold risk of TB transmission to their workers, few health facilities have implemented simple infection control measures to protect health care workers and patients.

 

 

Financial resources and commitments remain insufficient.  The most recent data available on resources allocated to TB programs ($3 billion in 2009) and research ($483 million in 2007) are absolutely insufficient compared to the $5 billion needed for programs in 2009 and the $2 billion for research in 2007.  At these funding levels the targets set by The Global Plan to Stop TB (2006-2015) will not be realized by 2015. International donors and national governments must invest in new diagnostics and treatments to begin addressing individual suffering and face the growing threat of TB.

• Rights-based responses are few and the needs of the most marginalized continue to be unmet. Though respect for human rights and promotion of public health are most effective when they operate jointly, oftentimes TB programs and especially MDR programs have not sought an optimal balance between the two.  Further, accessible and quality services and care for the most vulnerable and socially marginalized, including prisoners, drug users, refugees, and migrant workers are unavailable or extremely limited.

 

• Meaningful civil society participation in policy and program development and implementation remains weak.  The contributions and perspectives of civil society in TB remains relatively absent from most resource, policy and program advocacy and decision making, especially at country level.

 

In light of the current state of affairs, we urge governments, donors, and global policy makers, researchers and fellow civil society activists to:

• Act with a sense of urgency and partner with different stakeholders to devise and implement coherent national plans with targets to provide a comprehensive response to TB.
• Invest the $44 billion for TB control needed between 2009 and 2015 to fully realize the promise of the Global Plan and at least additional $2 billion a year for TB research, critical and currently not covered in the plan.
• Make community based treatment and support, including for MDR TB, and active TB case finding key components of an effective TB response.

 

Though we all must play our part in fighting TB, we also believe that different institutions and stakeholders have specific responsibilities.  In this regard we call upon governments, donors, grant makers, national programs, researchers, international bodies (WHO, UNAIDS and The Stop TB Partnership) and communities of people infected/ affected with TB to urgently address the following areas:

 

 

Policy, Program Development and Implementation

• Governments to ensure that a “patient-centered” approach that respects human rights is a central guiding principle in all TB care efforts.
• Health care personnel, service providers and civil society organizations to ensure that the principles outlined in The Patients’ Charter for Tuberculosis Care are upheld to reduce stigma and combat discrimination.
• National TB programs to implement the WHO algorithm to diagnose smear negative and extra pulmonary TB as well as expand access to culture and drug susceptibility testing.
• National TB Programs to partner with civil society organizations to actively find TB cases in the community in order to prevent TB transmission and deaths due to undiagnosed TB.
• National TB and AIDS Programs to collaborate to achieve Universal Access to TB/HIV services by 2010 in line with the Global Plan and UNAIDS targets.
• National AIDS Programs to shoulder their responsibility to ensure that every person with HIV is regularly screened for TB and provided treatment and/or prevention as appropriate and that every AIDS clinic employs infection control measures to reduce TB transmission.
• The Stop TB Partnership and WHO to take a greater leadership role in catalyzing resources as well as providing countries policy guidance and technical support to address the challenges for TB control including laboratory infrastructure, community-based DOTS, TB/HIV co-infection and MDR-TB.
• National TB Programs should take up the call by the Global Fund Board urging countries to submit proposals to scale up laboratory capacity and community based management of M/XDR-TB cases.
• National TB and HIV/AIDS Programs should take up the call by the Global Fund Board to include and implement significant robust TB interventions in the HIV/AIDS proposals and HIV/AIDS interventions in TB proposals.
• Donors to immediately provide new pledges to fill the $5 billion gap at the Global Fund for AIDS, TB and Malaria-the largest external TB financier-and to ensure the promised scale up of programs is realized.
• Donors to work with the World Health Organization (WHO) and Stop TB Partnership, to harmonize their indicators and monitoring and evaluation framework to reduce the burden on fund recipients.

 

Research and New Tools

• Researchers to work collaboratively and with a sense of immediacy to ascertain the best use of currently available tools and develop and advocate for funding for a comprehensive research agenda that takes into account the specific needs of pediatric TB patients, patients co-infected with HIV and other common co-morbidities such as Hepatitis C. Less toxic, more potent drugs to shorten the length of treatment and address drug-resistant TB are urgently needed.   
• Researchers to prioritize the development of new diagnostic tools that can provide faster and more accurate TB diagnosis for smear positive, smear negative and drug resistant TB, including diagnostics appropriate for children, HIV co-infected patients and for use in resource-poor settings. There is a desperate need for new diagnostic tools that are simple, reliable and field adapted.
• Researchers, funders, and National TB Programs (NTP) to work together to strengthen research infrastructure in countries with high burden of TB to ensure that there is adequate capacity to conduct research to develop new tools as well as learn about the best strategies to implement existing tools.
• Implementers and funders to ensure that new diagnostic tools and drugs developed are made available and accessible in the countries most in need.

 

Civil Society Participation

• UN agencies, donors and governments to encourage, and support civil society participation at national and international forums and promote trained community members as active implementers and advocates of the response.  This support needs to include training and funding for the civil society members so that they may fully participate in decision making and seek broader community input in setting the agenda for the TB response.
• People with HIV and other communities who are disproportionately impacted by TB to learn about our rights and responsibilities as described in the The Patients’ Charter for Tuberculosis Care and to build our science, research, and policy literacy so that we can fully participate in TB program and policy formulation.
• National TB Programs to clearly outline the role of civil society in TB control efforts in their national plans.
• Researchers to harness the knowledge and activist power of communities, especially in whom research is being conducted, to advocate for resources for research and the translation of research findings into sound policy and programs.
• Civil society to play a critical role in advocating for the mobilization of resources to meet Global Plan targets and for the Global Fund which has been critical in providing resources for TB control in high TB-burden countries.

 

COMMUNITY ACTION CALL TO GLOBAL TUBERCULOSIS CONTROL AND PATIENT CARE  MINISTERIAL MEETING OF HIGH M/XDR-TB BURDEN COUNTRIES, BEIJING, CHINA

 

Multi Drug Resistant (MDR) and Extensively Drug Resistant (XDR) TB threaten to reverse gains made by TB and AIDS programs.  The high level of mortality amongst people with HIV due to M/XDR-TB necessitates special attention to prevent and treat drug resistant TB among this population.  Infection control and early case detection should be implemented to prevent and detect TB among people with HIV and treatment support should be prioritized to encourage treatment completion.

 

The civil society participants at the 3rd Stop TB Partners Forum in Rio de Janeiro, Brazil, call on participants at this meeting to include the following in the action plans they develop as a group and as countries:

 

• Ensure that necessary diagnostic tests and treatments for drug resistant TB are accessible wherever M/XDR-TB are found.  Support the development of and ensure access to new diagnostic tools that can be used at the point-of-care, and treatment regimens that are proven effective in children and compatible with HIV medications.
• Invest at least the $270 million needed each year between 2009-2015 to scale up laboratory capacity to provide Universal Access to culture and drug susceptibility testing and develop national and regional laboratory indicators to measure progress.
• Make community-based care for MDR-TB, which has been shown to lead to better treatment outcomes, be cost-effective, and facilitate access to critical services, a norm in your national MDR-TB programs. 
• Mandatory hospitalization should not remain the primary response to MDR-TB treatment, as it overburdens an already stretched health system, infringes on the rights of patients and does not guarantee appropriate and quality care or treatment success
• Ensure that all TB patients, including the most marginalized in society are able to receive treatment that respects their human rights and ensures treatment success.