Provocative distribution of yellow lemonade in urine collection cups calls attention to need for this simple, urine-based test
The Hague, 25 October 2018 — On the first day of the 49th Union World Conference on Lung Health, activists from around the globe kicked off a week of actions by calling on countries, development partners, and donors to end the unacceptable rates of death caused by tuberculosis (TB) in people living with HIV by immediately scaling up the use of TB LAM testing. TB remains the leading killer of people living with HIV and the TB LAM diagnostic test—a simple, inexpensive and life-saving test for detecting TB in people with advanced HIV who are at highest risk of dying from TB—is a worthwhile investment.
Activists from Treatment Action Group (TAG), TB Proof, the Global Coalition of TB Activists (GTCA), AIDS and Rights Alliance for Southern Africa (ARASA), Center for Artistic Activism (C4AA), International Indigenous Working Group on HIV & AIDS, Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN), LHL International, Stop TB Partnership (STBP), Stop TB Partnership - Kenya, TALAKU Community, Global TB Community Advisory Board (TB CAB), Health GAP, Tunisian Center for Public Health, Wote Youth and Development Projects, Médecins Sans Frontiéres (MSF) mission in South Africa, and Zimbabwe National Network of People Living with HIV (ZNNP+) set up a TB LAMonade stand, to call attention to the need for all high TB/HIV burden countries to scale up national implementation of the urine-based TB LAM test. They handed out urine-collection cups filled with lemonade with the label “WE’RE PISSED.” Mock TB LAM test strips included the simple message, “TB = #1 killer of people living with HIV. TB LAM testing saves lives.”
“TB is preventable and curable, yet every year hundreds of thousands of people with HIV die from TB,” said Safiqa Khimani, TB Project Officer for TAG. “TB LAM testing helps prevent needless deaths in those most at risk.”
“TB LAM can save lives,” noted Khairunisa Suleiman, co-technical lead of the Global TB CAB. “TB and HIV programs must use all the tools we have to end unnecessary TB deaths among people living with HIV.” The test, along with all other TB diagnostics and treatments, is available through the Stop TB Partnership’s Global Drug Facility (GDF).
The TB LAM test, manufactured by Abbott (formerly Alere), costs just USD$3.50 and requires no electricity or reagents. It has been shown in clinical trials to allow earlier TB diagnosis in people with advanced HIV, and to reduce TB mortality. TB LAM testing has been recommended by the World Health Organization for use in people with advanced HIV since 2015, and Global Fund and PEPFAR funding should be used for TB LAM procurement and implementation. Yet only a few countries (eSwatini, Kenya, and Uganda) have scaled up TB LAM testing nationally. South Africa’s new guidelines on TB case finding recommend TB LAM testing for all people living with HIV in hospital settings and among those with CD4 counts less than 100 mm3 in primary care settings. These recommendations are a welcome advance, but require a plan for implementation.
“Country programs need to accelerate the pace at which new and simple tools like TB LAM are available and accessible to prevent unnecessary deaths that are happening everyday from TB,” urged Rhea Lobo from the GCTA. Dr Zolelwa Sifumba, a TB survivor and member of TB Proof further emphasized, “It is essential that we invest in simple, life-saving strategies to end a disease that affects millions every year.”
“Our governments must protect their most vulnerable citizens,” remarked Lynette Mabote, Southern and East Africa Regional Programs Lead at ARASA. “Health and the benefits of scientific progress are human rights; access to TB LAM testing is therefore necessary to ensuring human rights.”
About the AIDS and Rights Alliance for Southern Africa (ARASA)
Established in 2002, the AIDS and Rights Alliance for Southern Africa (ARASA) is a regional partnership of 115 non-governmental organizations working collaboratively in 18 countries in southern and east Africa to promote human rights in the context of HIV, tuberculosis (TB), and sexual and reproductive health and rights (SRHR). The ARASA partnership promotes inclusivity of all communities (in their diversity) in advocating for enabling national legal and policy environments to advance equitable and equal access to affordable health services.
About Center for Artistic Activism (C4AA)
The Center for Artistic Activism is a research and training institute dedicated to making activism more creative and art more effective.
About the Global Coalition of TB Activists (GCTA)
The GCTA is a global platform of people affected by TB to advocate for a people-centered, rights-based approach to TB response. GCTA strives to encourage, establish, mentor and bring together regional and national TB coalitions to globally collaborate on addressing issues of TB-affected communities on policy, treatment and access, leveraging complementary strengths to achieve greater and wider advocacy impact. The GCTA became a legally registered entity in 2018 and currently has over 300 members from around the globe. The GCTA envisions a ‘World Free of Tuberculosis’ with a mission to ensure that voices of TB-affected communities influence the global TB and health agenda.
About Health Global Access Project (Health GAP)
Health GAP is an organization of AIDS and human rights activists, people living with HIV/AIDS, public health experts, fair trade advocates and concerned individuals who campaign against policies of neglect and avarice that deny treatment to millions and fuel the spread of HIV. We are dedicated to eliminating barriers to universal access to affordable life-sustaining medicines for people living with HIV/AIDS as key to a comprehensive strategy to confront and ultimately stop the AIDS pandemic. We believe that the human right to life and to health must prevail over the pharmaceutical industry's excessive profits and expanding patent rights.
About International Indigenous Working Group on HIV & AIDS (IIWGHA)
IIWGHA’s mission is to create an international voice and structure that links Indigenous peoples with their Indigenous leadership, varying levels of governments, AIDS service organizations, cooperatives, and others in a global collective action to lower the disproportionate impact of HIV and AIDS experienced by Indigenous peoples.
About Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN)
KELIN is a human rights NGO working to protect and promote health-related human rights in Kenya. We do this by: providing legal services and support, training professionals on human rights, engaging in advocacy campaigns that promote awareness of human rights issues, conducting research and influencing policy that promotes evidence-based change. KELIN’s current program areas are around: promoting justice for widows and orphans, campaigning for funding for health services, ensuring the government effectively supports the rights of TB patients and persuading people in Kenya to know and use their human rights. Our vison is the full enjoyment of health-related human rights for all.
About LHL International
LHL International was established as a foundation on 1 January 2013, by the Norwegian Heart and Lung Patient organization (LHL). LHL was founded in 1943 as a special interest group for people with TB. The organization fought against prejudice, and promoted TB patients’ right to work and social security. LHL International's aid work, which started in the 1980s, builds on this history. Today, LHL International has partners and projects in Malawi, Tanzania, Sudan, Zambia, Russia, Romania and Norway, mostly funded through grants from the Norwegian government.
About Médecins Sans Frontiéres (MSF) Mission in South Africa
MSF is an international, independent medical humanitarian organization that provides medical assistance to people affected by conflict, epidemics, disasters, or exclusion from healthcare. MSF’s teams are made up of tens of thousands of health professionals, logistic and administrative staff - bound together by MSF’s charter. MSF’s actions are guided by medical ethics and the principles of impartiality, independence and neutrality. MSF is a non-profit, self-governed, member-based organization. MSF was founded in 1971 in Paris by a group of journalists and doctors. Today, MSF is a worldwide movement of more than 42,000 people.
About the Stop TB Partnership (STBP)
The Stop TB Partnership’s mission is to serve every person who is vulnerable to TB and ensure that quality diagnosis, treatment, and care are available to all who need it. The Stop TB Partnership’s 1500 partners include international and technical organizations, government programs, research and funding agencies, foundations, NGOs, civil society and community groups and the private sector. The Stop TB Partnership is governed by a Coordinating Board and operates through a secretariat hosted by UNOPS in Geneva, Switzerland and seven working groups whose role is to accelerate progress on access to TB diagnosis and treatment; research and development for new TB diagnostics, drugs and vaccines; and tackling drug resistant- and HIV-associated TB.
About Stop TB Partnership – Kenya
The STOP TB Partnership – Kenya is a movement of individuals and organizations from the Government of Kenya, corporate community, patient community and the people of Kenya who are dedicated to eliminating tuberculosis (TB) and reduction of poverty-related diseases in Kenya. The movement mirrors the Global Stop TB Partnership, which comprises of donors, national and international organizations, government and non-governmental organizations, affected communities and academic institutions working together to reduce the burden of TB worldwide and ultimately achieve a world free of TB.
About TALAKU Community
TALAKU Community is a non-profit organization, which was founded in 2012 by a former TB patient. It main goals are to educate the community on the signs and symptoms of TB, measures of preventing and caring for TB patients. The importance of treatment adherence, contact tracing for family members and tracing lost to follow up. TALAKU educates the pastoral community on adequate measure on preventing Zoonotic TB.
About the Global TB Community Advisory Board (TB CAB)
The TB CAB is a group of strong, research-literate community activists from HIV and TB networks in Asia, Europe, Africa, and North and South America. Founded in 2011, the TB CAB acts in an advisory capacity to: product developers and institutions conducting clinical trials of new TB drugs, regimens, diagnostics, and vaccines; and provide input on study design, early access, regulatory approval, post-marketing, and implementation strategies. The TB CAB is dedicated to increasing community involvement in TB research and access to tools to fight TB, and mobilizing political will.
About TB Proof
TB Proof is a non-profit organization, founded by healthcare workers who were personally affected by TB. TB Proof’s goals are to: (1) create safer healthcare environments to ‘TB PROOF’ healthcare workers and patients by raising awareness of TB transmission prevention; (2) de-stigmatize all forms of TB with particular emphasis on stigma arising from drug-resistant TB (DR-TB), occupational TB and HIV/TB co-infection; and (3) mobilize resources for TB prevention through community activism, education and collaboration with national and global partners.
About Treatment Action Group (TAG)
TAG is an independent, activist, and community-based research and policy think tank fighting for better treatment and prevention, a vaccine, and a cure for HIV, TB, and hepatitis C virus (HCV). TAG works to ensure that all people with HIV, TB, and HCV receive lifesaving treatment, care, and information. We are science-based treatment activists working to expand and accelerate vital research and effective community engagement with research and policy institutions.
About Tunisian Center for Public Health
The Tunisian Center for Public Health works collaboratively with academics and community partners to design and implement research and develop intervention strategies for urban and vulnerable populations. The Center utilizes research findings to provide tangible benefits to communities, reduce health care disparities, and foster public health care quality improvement.
About Wote Youth and Development Projects
Wote Youth Development Projects was established as an advocacy group for HIV/AIDS in 2002 using participatory interactive media mode. The youth use drama, skits, dance, role plays and football for ACSM. Currently we are implementing a CFCS TB project with STOP TB Partnership as Ambassadors of Hope.
About Zimbabwe National Network of People Living with HIV (ZNNP+)
ZNNP+ is committed to be the leading national organization for advocating and lobbying for the rights of PLHIV to improve their quality of life. Our goal is to assist in ensuring that the infected and affected (by HIV and AIDS) have access to holistic care and support, prevention, treatment and mitigation in a transparent and accountable manner and to ensure that the infected and affected participate in decisions that affect them at all levels.
 World Health Organization-listed high TB/HIV burden countries: Angola, Botswana, Brazil, Burma, Cameroon, Central African Republic, Chad, China, Congo, Democratic Republic of the Congo, Ethiopia, Ghana, Guinea-Bissau, India, Indonesia, Kenya, Lesotho, Liberia, Malawi, Mozambique, Namibia, Nigeria, Papua New Guinea, South Africa, Swaziland (eSwatini), Thailand, Uganda, Tanzania, Zambia, Zimbabwe
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How is it possible...
...that we sent people to the moon almost 50 years ago, yet millions of people with tuberculosis are still treated with old, inadequate medicines?