Breaking the Silence, v2
Treatment Advocates Strategize At TAG's 2nd Annual International TB/HIV Workshop
Activists From 31 Countries
Building on the success of the First International TB/HIV Community Education and Mobilization Workshop, held in conjunction with the 33rd International Union Against Tuberculosis and Lung Disease (IUATLD) Conference on Lung Health in Montréal in 2003, the Second International TB/HIV Community Education and Mobilization Workshop had the following objectives:
To educate HIV community representatives on the various aspects of TB/HIV coinfection research, prevention, treatment, and policy.
To empower HIV community representatives to mobilize and disseminate information about TB/HIV coinfection to their local communities.
To give HIV community representatives the skills necessary to help their communities understand, participate in, and provide community input in research and clinical trials.
To provide an opportunity for international HIV community representatives to develop working relationships work with WHO, the Stop TB Partnership, the Global Fund, and other stakeholders to more effectively represent affected communities in prevention, research, treatment, and care programs focusing on TB/HIV coinfection.
To provide an opportunity for international HIV community representatives to develop working relationships with national and regional public health and TB and HIV/AIDS program officials so that they may work together to implement future TB/HIV initiatives.
To provide an opportunity for international HIV community representatives to develop plans and strategies to mobilize communities, policymakers, and resources to better fight TB/HIV at the country and regional levels, and participate in global policy dialogue.
The 2nd workshop incorporated several changes made to address the needs identified by participants in the 1st workshop. Fifty participants took part. The workshop was two-and-a-half days long. There were more opportunities for small group interactions, and longer strategy sessions. As in 2002, participants at the 2nd workshop attended IUATLD conference sessions on TB and TB/HIV coinfection, met with TB program officials, and networked extensively at the Union meeting to develop stronger relationships with national and regional public health, TB and HIV/AIDS program officers, the World Health Organization (WHO), the Stop TB Partnership, the Global Fund to Fight AIDS, TB and Malaria (GFATM), and others to more effectively represent affected communities.
Over one million people worldwide die annually of tuberculosis, according to the World Health Organization. TB, a 100 percent curable disease, is today silently causing more deaths than ever in the history of mankind.
"TB is the biggest killer of People Living with HIV/AIDS (PLWHA). I know because I watched my brothers die. I would have been dead too. I am alive today because I got access to TB treatment on time," said Winstone Zulu of the Zambian Network of People Living with HIV, during the 2003 IUATLD Conference in Paris. "I never thought TB was a problem until I lost four brothers to the disease within a space of three years," he said.
"Many people don't know they have TB until it's too late," echoed Nomfundo Dubula of the Treatment Action Campaign, South Africa. "I suffered from TB too, and it was difficult staying on medication," she said. "Early detection and prompt treatment saved my life. I couldn't have done it without support. The fear that I might have to start treatment all over again if I didn't complete my doses kept me going."
"The difficulty in diagnosing TB cases has robbed us of the lives of many PLWHA in Brazil," said Ezio Santos-Filho of Gruppo Pela VIDDA, an HIV-positive group in Rio de Janeiro.
"AIDS activism cannot occur without TB activism," said Dr. Fabio Scano of WHO's Stop TB Program. "The social mobilization and community participation that drove the response to HIV/AIDS is needed in the fight against TB."
The case for a closer look at the world's TB epidemic could not have been made more forcefully, as scientists and advocates met for four days in the fall of 2003 to examine current trends, scientific advances and progress made in controlling the global epidemic.
The scientists met under the aegis of the IUATLD. As researchers exchanged data during the conference, treatment advocates attended a TB/HIV co-infection education and community mobilization workshop convened by the Treatment Action Group (TAG). The workshop was designed to stimulate discussions about the key issues fueling TB/HIV co-epidemics and strategies for addressing them.
For the many of the over 60 treatment activists from 31 countries who attended the workshop, discussions in the various groups were an eye-opener to the untold havoc TB is wrecking in many communities, its intrinsic linkage with HIV and the need to adopt proactive strategies to stem this "silent epidemic." Various factors were identified as fueling this, such as the rising incidence of new HIV infections, poor diagnostic facilities, low case detection of new TB infections and lack of trained health care professionals. Other factors include "brain drain," under funding of national TB programs, lack of political leadership, insufficient drug supply at TB treatment centers and the incidence of multi-drug resistance.
Situation reports presented on the state of TB programs in many countries including Niger, Ukraine, South Africa, Brazil, Zambia, Thailand, Kenya, and Nigeria revealed that, despite over three decades of existence, national TB programs still remain grossly under-funded, and require stronger political commitment in stemming the tide of the epidemic.
It seemed TB programs have next to nothing, compared to national HIV programs which enjoy huge funding budgets, external donor support, high political will and commitment, civil society and community involvement, established peer support groups, and trained human resources.
Dr. Gani Alabi, a WHO staffperson who works on TB in south-western Nigeria, said, "Nigeria has a strong HIV/AIDS committee headed by the President, a multi-sector committee comprised of representatives from many sectors, including numerous civil society groups working on HIV/AIDS. These interventions receive a lot of funding and are well staffed; unfortunately, TB control programs in the country lack this type of support."
He continued, "Although a free TB treatment policy exists, many of the TB treatment centers do not have drugs for their clients when they need them. WHO plans to start the integration of TB/HIV programs in six selected states in the country, but political will and financial commitment is needed in order to make this a reality."
Karyn Kaplan of the Thai AIDS Treatment Action Group (TTAG) also pointed out that while the Global Fund to Fight HIV/AIDS Tuberculosis and Malaria presents a great opportunity to fund proposals for expanding TB interventions, there has been little or no meaningful engagement of PLWHA or those affected by TB in the Country Coordinating Mechanisms in countries which ought to push for requests for funding.
At the end of in-depth deliberations, participants recommended the integration of existing HIV and TB programs, and the need to mobilize community support for the Directly Observed Treatment Strategy (DOTS) in reducing the spread of TB.
Activists also proposed various other follow up activities at country levels to support DOTS. High on the list of recommendations was the need to organize treatment literacy workshops and community education on the signs and symptoms of TB, adherence and drug compliance. They also agreed to strengthen national coalitions on TB and mobilize for greater political and financial commitment from governments, donor agencies and civil society groups for TB control programs.
How Can AIDS Activism Contribute to TB Control?
AIDS activist movements have developed skills and strategies that can be adapted for use in campaigns against TB and TB/HIV. One of the first key strategies is to increase national spending on research, prevention, treatment and care. Increased funding for the National Institutes of Health has been one of TAG's key goals.
The budget for TB research is quite small compared with the disease burden. While the NIH spends $2.7 billion each year on HIV/AIDS research, it spends just over $200 million on TB research. More research is needed on shorter TB regimens, better drugs, point-of-use diagnostics, antiretroviral and TB drug-drug interactions. Drugs to prevent and treat opportunistic infections, such as cotrimoxazole and isoniazid, are also critical components of TB/HIV care.
There have been different phases of TB advocacy over the past 100 years, from the sanitarium movements to DOTS. There is now a push to link to the strengths of the international AIDS treatment access movement to TB advocacy, but the core strategy of PWA's involvement at all levels is difficult to replicate with TB, which unlike HIV is not a life-long condition.
In the U.S., the $10,000/year price of AZT upon its approval in 1987 created outrage which contributed to the founding of ACT UP. "Insider/outsider" strategies can be useful and complementary: activists identify problems and meet with government policy makers at the same time as they generate pressure via media and social mobilization.
Drug pricing remains an issue, although continued pressure has brought down the price for generic antiretroviral therapy. In less developed countries, however, antiretroviral therapies will need to be free in most settings. Wealthy countries will need to provide the resources to make this happen. Even if antiretroviral therapy programs ultimately cost $500 per person year for three million people, that is only $1.5 billion -- which is the weekly cost of the U.S. occupation of Iraq.