Snapshots of community advocacy in high-burden TB countries

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At the Union World Conference on Lung Health Thursday, the Global Fund to Fight AIDS, Tuberculosis and Malaria hosted a forum that showcased civil society tuberculosis (TB) advocacy efforts and outlined the Global Fund’s work to ensure the inclusion of civil society in country-level processes related to Fund grant-making.

Kenya's Kibera slums.


Jeremiah Muhwa Chakaya from Kenya reported on a project funded by TB REACH to increase early TB case finding in two Kenyan urban slums through peer to peer screening in homes and in other venues.

TB REACH, part of the Stop TB Partnership, works to increase case detection of TB as early as possible and ensure timely and complete treatment while maintaining high TB cure rates by offering one-year grants to countries with limited or no access to TB services.

This particular project, which began in September 2010, successfully identified 1,900 cases of TB that reflected an increase in notified TB cases in these areas by 5.8 percent.  This increase was especially notable because overall TB case notification rates in Kenya declined during this period. Chakaya identified a number of elements that led to the success of the project including support from community leaders, incentive items for participants like bags, boots and sputum mugs, financial and other support for the community health workers and endorsement and assistance by the TB control establishment.

Children living in Kenya's Kibera slums.

Some of the challenges faced in the project were community health worker turnover due to the lack of long-term job security, safety issues faced by project workers in the slums, and demand from community participants for broader health care services beyond TB screening and linkage to TB treatment.

Chakaya pointed out that it is important to host community meetings to promote community ownership and argued that there is “a need to move to a more comprehensive health approach” to respond to community needs.

Muhammad Kyeyune from Strategic Organization for Real Action (SORAC), a Ugandan civil society organization, talked about their project to foster TB/HIV collaborative activities and to ensure that TB/HIV co-infection was prioritized in the health district’s strategic and operational plans.  SORAC engaged in a number of activities from using radio talk show hosts to educate community members, encourage TB screening and nudge government officials to host advocacy meetings, and building the capacity of community health workers (CHW) to provide social support to those on TB treatment through home visits.  They faced a number o f challenges in this effort such as inadequate TB diagnostic and treatment services in the community, stigma and discrimination, and misleading religious dogma from some local pastors who discourage people from taking TB or HIV drugs. Kyeyune argued that TB/HIV co-infection requires a community and not simply a health clinic response especially for poor, rural Ugandans with low literacy skills.  SORAC clearly offered value by providing information to community members about TB symptoms, diagnosis and treatment.  They also had success at the health district level where TB/HIV was explicitly integrated into the district’s operational plan and health personnel for TB/HIV services were increased from three to 14.

Alexandra Volgina from the International Treatment Preparedness Coalition in Russia (ITPC-RU) spoke about their advocacy activities as a Global Fund sub-grantee in St. Petersburg. ITPC-RU had received initial funding from the U.S.-based Tides Foundation. Their project is aimed at improving the quality of TB treatment and treatment completion rates among injection drug users, many of whom also have HIV infection and Hepatitis C.

The initial project was to provide social support and advocacy for individual patients hospitalized for TB treatment.  Generally speaking patients with TB in Russia are treated in the hospital for as long as a year under very difficult conditions, with no services provided to address drug addiction. When the project started, rates of treatment default ranged from 65 to 80 percent.  Patients simply left the hospital in droves.  Now treatment default rates have decreased to 32 percent.  Impressed with the success of the project, the city now supports the salary of the social worker, which was previously paid for by the non-government organization.

The project has shifted its focus to working to improve the TB treatment system.  They have been working with TB specialists and narcologists (addiction doctors) who know the system does not work for their patients and have welcomed the involvement of the advocates. They are working as partners to map out the problems and barriers that constitute the revolving door of repeated unsuccessful hospitalizations for TB treatment.  They are advocating for increased psychological and social supports for patients, reduced treatment time and ultimately the establishment of an effective Directly Observed Therapy Short Course (DOTS) outpatient system.  Despite the fact that the current system fosters drug resistant TB, it has been challenging to engage government health officials.  They are also working to pressure pharmaceutical companies to increase the availability of second-line TB treatment for drug resistant TB.

Most of the members of the group are persons living with HIV and it is dangerous for them to do the work in the TB hospital, so they have been careful to recruit persons without HIV infection to do the TB hospital-based work.

Katja Roll from the Global Fund to Fight AIDS, Tuberculosis and Malaria offered the civil society attendees at this forum an update. The Global Fund has provided $3.6 billion for tuberculosis to date, including $340 million in the tenth round of grants. Most countries have not yet signed their grants for Round 10, but they must be signed by December and the money will be distributed early in 2012.  Round 11 has been postponed until at least March 2012 for lack of resources and some important decisions could be made about the way forward at the next Global Fund board meeting scheduled for November 21-22.

Roll reminded the group that the new country coordinating mechanisms (CCM) guidance require membership by persons with HIV/AIDS and those who have been affected by tuberculosis.  One hundred fifty-six CCM members report that they have TB expertise and 100 of those individuals come from the ranks of civil society.  She also noted that country applications may include funding requests for community system strengthening as well as for health systems strengthening, although such funding requests represented only 3.65 percent of all approved funding requests in Round 10. Approved TB country grants in Round 10 that include funding for community systems strengthening are Eritrea, Ghana, Somalia and Swaziland.

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