Strengthening HIV Community Involvement in the
Fight Against TB and HIV

Dr. Gijs Elzinga
Chair, TB/HIV Working Group
Stop TB Partnership

Dr. Jim Kim
Director, HIV Department
World Health Organization

Dr. Mario Raviglione
Director, Stop TB Department
World Health Organization

The 4th Global Stop TB Partnership TB/HIV Working Group meeting held in Addis Ababa on 20-21 September 2004 and followed by a three-day CDC-sponsored workshop on integrating HIV testing into TB programs was the first such meeting attended by significant numbers of representatives from HIV/AIDS treatment activist organizations. Activists attended from India, Kenya, Nigeria, South Africa, the United States, Uganda and Zambia. They were invited based on attendance at a TB/HIV advocacy workshop held in Nairobi, Kenya, by WHO in July 2004, or on submission of an accepted poster on TB/HIV advocacy for the marketplace session at the Working Group meeting.

Most of the activists present met during a breakout session on the afternoon of September 21—some were presenting present posters in the marketplace time—to discuss working together.

This letter to the TB/HIV Working Group and the directors of the WHO HIV and Stop TB Departments reflects the discussions held by us in Addis Ababa and by e-mail afterwards. Here we raise some issues which we think are critical to expanding the fight against HIV-related TB.

1. HIV community participation in the Stop TB movement is essential and must be expanded.

The HIV treatment activist community welcomes the first steps toward our inclusion within the Stop TB Partnership and its TB/HIV Working Group. This inclusion needs to be expanded into all activities of the Working Group as well as into the other six Working Groups of the Partnership—DOTS Expansion, MDR-TB, Diagnostics, New Drugs, Vaccines, and particularly the new Advocacy & Communications Working Group.

Representatives of HIV community and treatment activist organizations and networks need to be involved in these working groups. Each region will need significant representation on the Advocacy and Communications Working Group in particular. We look forward to hearing the results of the Stop TB Partnership Coordinating Board meeting and its discussion of these issues.

The WHO is still learning how to work more effectively with broadly-based civil society organizations, including HIV community and treatment activist groups. However, we believe that such intensified involvement will be a critical part of doing better in meeting the global targets for TB control. This requires community involvement at all levels in global, regional, country-level and local/district level TB and HIV programs. We call upon the Partnership and the WHO to move rapidly forward to increase such community involvement.

2. TB/HIV needs to be incorporated into HIV community treatment activist and treatment literacy efforts and programs.

Everywhere, TB is a major killer of people with HIV/AIDS. Activist groups and treatment literacy programs need to incorporate TB/HIV as a core activity in their advocacy and education activities. Some successful examples of this already exist, such as with Treatment Action Campaign (TAC) in South Africa. Such examples need to be documented, adapted, and emulated elsewhere. We salute the WHO for the recent $1 million award to the Collaborative Fund for Treatment Preparedness as a step forward in supporting strengthened treatment literacy activities, which should include TB/HIV as an integral part of their programs. Other mechanisms such as Global Fund to Fight AIDS, TB and Malaria (GFATM) grants and the President's Emergency Plan for AIDS Relief (PEPFAR), as well as other bilateral donor programs and national AIDS and TB programs should also support community-led treatment literacy as a core activity.

3. Political commitment to TB control needs to move from words to action.

All world governments have endorsed TB control since 1993, when the World Health Assembly (WHA) declared TB a global health emergency. Yet worldwide over 31% of people lack access to functioning TB control programs. Where DOTS is available, it is often not of acceptable quality, or accessible. In too many places even the poorest TB patients must pay to attend a clinic, be tested, see a doctor, and be treated. In Africa, 70% of people with AIDS lack access to a functioning TB program. TB care and treatment must be universal and free. Governments everywhere must meet their commitments made in the Amsterdam Declaration, the Millennium Summit, the UNGASS, the Abuja Summit, and the World Health Assembly. Access to TB prevention, diagnosis, treatment, and cure is an essential human right.

4. The DOTS strategy must be expanded and adapted to the challenges of TB-HIV.

Since 1993 the world has broadly increased implementation of the five-point framework of DOTS, the WHO-recommended TB control strategy. However, DOTS must be expanded and adapted to the challenges posed by the HIV pandemic, which require new ways of doing things.

The DOTS strategy relies on passive case finding, in which patients report to TB centers with a chronic cough. Passive case finding must be replaced by active case-finding among populations and settings where HIV infection is endemic or expanding. This means seeking out people with TB symptoms where they live and work and encouraging them to be tested for TB.

DOTS traditionally relies on diagnosis by a positive acid-fast bacilli (AFB) stain on a series of three sputum smear microscopy tests—an approach which has remained unchanged since its discovery by Robert Koch in 1888. While every TB clinic needs a functioning microscope to diagnose sputumsmear positive TB, among people infected with HIV as many as two-thirds of TB cases may be sputum-smear negative (SSN) or extrapulmonary TB (ETB). Mortality during the first phase of TB treatment is as over 30% in some African countries, largely due to late diagnosis of SSN and ETB, leading to treatment failure, or to AIDS complications among those coinfected with HIV.

TB programs need to be much more aggressive in diagnosing SSN and ETB earlier. New WHO diagnostic guidelines are needed to assure faster diagnosis using existing tools. Access to chest X-ray facilities and bacterial culture technologies should be expanded to provide better surveillance of drug-resistant TB and where possible to speed diagnosis of SSN and ETB.

Accelerated research efforts are needed to develop new, low-cost diagnostics for TB, including SSN, ETB and MDR-TB, which can be used with high accuracy in field settings.

We need better information on how best to use TB drugs, particularly rifampicin (rifampin) concurrently with antiretroviral (ARV) drugs such as the non-nucleoside nevirapine and the protease inhibitors. This information will help assure those with HIV-TB coinfection of early, effective treatment for both conditions. Pharmacokinetic, safety and effectiveness studies of these combinations are an urgent priority.

Shockingly, according to WHO, in 2002 just 1% of eligible people with HIV and latent tuberculosis infection (LTBI) worldwide received isoniazid prophylaxis therapy (IPT)—despite WHO recommendations for its use since the 1990s, backed by evidence from over ten randomized clinical trials proving its effectiveness. All people with HIV and latent tuberculosis infection (LTBI) should receive six to nine months of isoniazid preventive therapy (IPT). We are particularly concerned that many countries have failed to implement IPT in spite of the overwhelming evidence of its efficacy, based on concerns about adherence and the emergence of resistance. With strong community treatment literacy programs, these problems can be addressed and mitigated. We are encouraged that Botswana and Malawi are implementing IPT in their national HIV/AIDS treatment programs.

In 1998 two clinical trials from Abidjan, Côte d'Ivoire were published in The Lancet proving that cotrimoxazole preventive therapy (CPT) reduced hospitalization and death by 50% among TB patients coinfected with HIV. Shockingly, however, by 2002 fewer than 1% of eligible individuals worldwide were receiving CPT. Universal access to CPT should be implemented immediately for all HIV-infected persons with TB.

Evidence presented at the 4th TB/HIV Working Group showed that many countries are making progress in harmonizing their TB and HIV programs, and some are already implementing the WHO-recommended collaborative TB/HIV activities. Universal implementation of these activities as appropriate for different country settings needs to be an immediate priority for all AIDS and TB programs.

Requiring fully directly-observed therapy (DOT) for the entire six– to eight-month TB treatment course imposes heavy burdens on TB program staff and on TB patients. Many programs have successfully introduced self-administered therapy (SAT), particularly during the continuation (two-drug) phase of therapy. Moreover, much experience from HIV demonstrates that with proper treatment literacy interventions and community-based treatment support, people can achieve very high adherence rates even where DOT is not the preferred model of care. This underlines the importance of expanding treatment literacy about TB care in communities affected by TB and in patients undergoing TB treatment. Alternatives to DOT can help to widen access to effective TB treatment in places where traditional DOT is infeasible or too resource-intensive.

Another issue which needs to be addressed is continuity of TB treatment in mobile populations. Examples include long-distance truck drivers, miners, prisoners, and economic and political refugees. Systems must be developed and strengthen to assure continuity of TB treatment for individuals who do not stay in the same location over the six to eight months of treatment.

On 2 October 2004 The Lancet published the results of IUATLD study A, a large international study which enrolled 1,355 patients with TB, which included a comparison of four months of continuation therapy with INH-rifampicin (HR) to six months with ethambutol-isoniazid (EH). The results clearly showed that EH was "significantly inferior" to HR with successful outcomes in 83-84% (EH) versus 91% (HR) 12 months after treatment completion. Unfavorable responses to EH continuation therapy were even more pronounced among those with baseline resistance to INH—just 4% failed treatment on HR versus 27-38% in the two arms including EH. Among 68 HIV-coinfected Africans in the study, 5% failed HR versus 27% who failed EH (A Jindani, AJ Nunn, DA Enarson, "Two 8-month regimens of chemotherapy for treatment of newly diagnosed pulmonary tuberculosis: international multicentre randomised trial," The Lancet 2004; 364:1244-51, 2 October). Thus, switching continuation-phase regimens from EH to HR should be a priority, especially in areas—such as the former Soviet states—with high rates of baseline resistance to INH—and in others—such as sub-Saharan Africa—with high rates of TB/HIV coinfection. In June, the Strategic & Technical Advisory Group for Tuberculosis (STAG-TB) recommended that WHO release updated TB treatment guidelines incorporating the new findings, but these have yet to be released, and some country TB programs are resisting the change due to program inertia and the reluctance to implement six months of directly-observed RH therapy. (As noted in 4f above stronger treatment literacy and support be used to address this issue.)

In most places, infection with multi-drug resistant (MDR) TB can be a death sentence because of inadequate diagnosis, insufficient drug supply, and an antiquated public health philosophy that emphasizes cost-effectiveness over the basic human right to health and life. As part of expanding and improving DOTS worldwide, universal access to diagnosis and treatment for MDR-TB must become a routine part of effective TB control programs.

5. The Stop TB Partnership needs to add its voices to those calling for macro-economic reforms to improve health systems worldwide.

The Stop TB Partnership needs to add its voices to those calling for macro-economic reforms to improve health systems worldwide, including continuing reductions in the price of essential drugs and diagnostics, long-term efforts to address the crisis in human resources for health (HRH) and debt relief for developing and middle-income countries.

6. Ultimately the battle against TB will only be won with new diagnostics, drugs and vaccines. Intensified, expanded basic, applied, clinical and operational research on TB and TB/HIV is urgently needed.

Just as AIDS activists played a key role in speeding the discovery, development, approval, and distribution of safe, effective antiretroviral drugs, so TB/HIV activists and the Partnership need to put new emphasis on efforts to optimize the use of existing tools through well-designed operational research and, most importantly, to stimulate the development of new diagnostics which can be used in field settings, new more potent and shorter-acting regimens for treatment of LTBI, TB disease and MDR-TB, and a safe, effective TB vaccine. Both developed and developing countries need to support strengthened research efforts to bring us to a world without TB.

We thank you for attending to our input and look forward to your response to our concerns, and to further interaction and integration into the worldwide movement against TB and HIV/AIDS.

Yours truly,

cc:          Dr. Nils Billo, IUATLD