Statement of Individuals from Communities Affected by Tuberculosis (TB)

36th IUATLD World Congress on Lung Health
23 October 2005
Paris, France

We are individuals from communities affected by the worldwide pandemic of tuberculosis (TB). We have seen the unnecessary suffering and death that TB causes, amplified by the overlapping HIV/AIDS pandemic. Up to two billion people worldwide are infected with the bacteria which causes TB. Each year, eight million people develop TB disease and two million die from it. Yet TB is preventable, treatable, and curable. The suffering and death it causes are unnecessary and unacceptable.

No one should die of a curable disease because of poverty or underfunded health systems. Human rights, public health, and social justice approaches all demand a better global response to stopping TB.

Universal access to existing TB diagnosis and treatment, and massively accelerated research to develop new and better tools are both urgently needed.

We can reduce the suffering caused by TB to 80 million people over the next ten years, prevent 20 million unnecessary deaths, and accelerate the day when tuberculosis – one of humanity’s most ancient diseases – is finally stopped.
What has been lacking is the political will, the scientific determination, and the popular support.

We call upon leaders, governments, and all sectors of society to take the following steps:

1. 1.  Recognize the importance of community participation in TB control efforts. People living with TB must be at the center of all TB awareness, prevention, care and treatment programs. Their rights and dignity must be respected. People living with TB have the right to participate fully in all organizations concerned with their care, at all levels including governance, planning, implementation, and evaluation of TB research, prevention, care, treatment, and advocacy programs.
2. 2. Increase investment to support community participation. Community activism is essential to ensure the growth and sustainability of TB control programs. Massively increased resources are needed to support community mobilization, awareness, education, literacy, and participation in TB control programs worldwide by people living with or most vulnerable to TB.
3. 3. Ensure expanded access to TB treatment. All people with active TB – not just those with sputum smear positive pulmonary TB – must be promptly and properly diagnosed, treated, and cured. This includes those with smear negative pulmonary TB, extrapulmonary TB, pediatric TB, HIV-related TB and multi-drug resistant (MDR) TB.
4. 4. Provide TB services to vulnerable populations. All affected communities must have full access to TB prevention, care and treatment, including women, children, homeless people, the unemployed, the uninsured, the incarcerated, populations regardless of immigration status, drug users, people living with HIV, and those with other life-threatening diseases.
5. 5. Incorporate TB program expansion into stronger health systems. TB control programs should be expanded in the context of strengthening health systems.
6. 6. Provide universal access to high-quality TB services. TB preventive measures, diagnosis, treatment, and cure must be made universally accessible, available, and free at the point of use to persons being screened or treated for TB, including those with multi-drug resistant (MDR) TB or with TB/HIV.
7. 7. Expand use of existing TB prevention methods. More emphasis is needed on use of existing tools to reduce TB transmission and treat latent infection, including administrative measures to reduce transmission in confined settings and isoniazid preventive therapy in people at high risk of progression to active TB, including those with TB/HIV.
8. 8. Scale up research on new tools to stop TB. Massively accelerated and greatly increased research funding is needed for new tools to prevent, diagnose, treat, and cure TB. Funding for this research should come from all countries from both public and private sectors. Community activism is needed to secure full funding of and community involvement in all stages of this research.
9. 9. Disseminate existing TB diagnostics and develop new ones.  New diagnostic tests to accurately diagnose TB – pulmonary and extrapulmonary, drug-sensitive and drug-resistant, adult and pediatric, and HIV-negative and HIV-positive – are urgently needed. These tests must be usable where the vast majority of people with TB get their care, in district hospitals, private providers, and health centers. Optimally, these point-of care assays must be rapid, require little technical training, not require electricity or refrigeration, able to withstand high heat and humidity, and be affordable for all public health systems. Currently available diagnostics such as culture and drug susceptibility testing (DST) must be made much more broadly available in resource-poor settings to increase the ability to diagnose smear-negative, extrapulmonary, pediatric, and drug-resistant TB.
10. 10. Develop shorter TB cures. New drugs and combination treatment regimens for TB are urgently needed which will fully cure over 95% of drug-sensitive and drug-resistant cases of TB within two months. These drugs must be affordable, available, safe, and effective especially for persons infected with MDR-TB or TB/HIV.
11. 11. Discover new TB vaccines. New vaccines for TB are needed which will prevent TB infection or disease in over 75% of those vaccinated without side effects, ideally in a single dose given once a lifetime.
12. 12. Stopping TB is a job for everyone. Governments around the world must commit the full resources, leadership, and long-term effort necessary to make TB a disease of the past. We call for strong, vocal, and persistent commitment by political leaders and systems worldwide, and by all sectors of society and community, to provide the resources needed to make TB a disease of the past.

For the past ten years, governments around the world have stated their commitment to stop TB. Now is the time to intensify this commitment by turning declarations into deeds, promises into programs. Community activism and advocacy are essential to ensure the growth and sustainability of TB programs. We commit to redouble our efforts to mobilize communities to respond to the TB epidemic by increasing our efforts in education, information dissemination, advocacy, support, and participation. We call for the same commitment from all with the power to help make the future one free of TB.

Download the document the manifesto in four languages above.