Working together to call for better TB lab technologies

A key issue expected to be highlighted at the 3^rd South African TB Conference this week in Durban is demand for new TB diagnostics and new approaches to managing TB.

It’s a subject familiar to Nelson Otwoma, of the National Network of People Living with HIV and AIDS in Kenya (NEPHAK), who spoke at the 42^nd Union World Conference on Lung Health, last October.

“There is a great need for continued consultative advocacy, communication and social mobilisation for TB laboratories – for the financial resources for laboratory infrastructure and personnel – key areas that have been identified as missing and lacking,” he said. “But we [the community] need stronger partnerships with laboratory initiatives in Kenya and in the region, to support and empower community leaders and representatives, so the community can support laboratory strengthening and quality initiatives.”

The emergence of TB activism

The HIV community has played a critical role in advocating, creating demand, and partnering in global and national HIV responses. Observing this, a number of forward-thinking clinicians, researchers and policy makers encouraged the traditionally paternalistic TB world to awaken to the importance of engaging affected communities in TB responses. The community of people with or at increased risk of TB, of course includes people living with HIV. Eventually community engagement found its way into the global Stop TB strategy.  

A number of international HIV treatment activists quickly learned the key TB issues while others, such as Winstone Zulu from Zambia, could personally speak to the need to implement collaborative responses to HIV/TB co-infection.

This has resulted in the development of improved TB treatment literacy in communities, policy changes, and more rapid adoption and implementation of TB-HIV collaboration. And, at the same time, TB programmes started changing – becoming more open, more concerned about patient-centred care, and willing to consider novel partnerships with the community in the development and delivery of TB services.

Advocating for better labs

Another consequence of activism was that long-neglected aspects of TB began to receive attention, such as the inadequacy of the medications used to cure TB, particularly in second-line therapy. Even worse, there had been no real change in the way that TB was diagnosed in over one hundred years. Tests such as smear microscopy and culture were slow, labour intensive and/or insensitive, particularly in people living with HIV. International activism brought attention to this issue and, although science is yet to deliver the holy grail of a simple, inexpensive and reliable point-of-care TB test, an infusion of funding from the Bill and Melinda Gates Foundation and others has generated new and improved TB diagnostic tools.

Introducing these new tools may be an expensive proposition at a time when there are other serious demands on health systems and severe funding constraints. The community could have an important role in creating a demand for these new tools and accountability in how they are funded and used. But mobilising local communities to demonstrate on behalf of laboratory technologies is not quite the same as teaching someone cough etiquette, or the importance of TB symptom screening. Can it be done?

Otwoma noted that Kenya was in a unique place to test this proposition, because the country “has met WHO targets for case detection (70%) and treatment success (85%)”, but “to find [the cases] we missed, we may require a new technology.”

While laboratory services should be seen as essential for a health programme, Otwoma said that they are often not available, or provide a poor quality service because policy makers, who don’t realise the importance of laboratory services, provide limited funding. This leads to a lack of qualified staff, inadequate facilities and irregular access to supplies.

“But we also realized that there is very minimal – if any – community engagement with laboratories,” said Otwoma. “Because you only go to a lab when you collect your results, or take in samples. But in most situations…the samples are taken there by somebody else. So you really don’t interact with the lab people.”

Finding the community perspective

NEPHAK acquired a small community task force grant from the STOP TB Partnership to perform a study to find out what patients’ and the community think about TB laboratories and, based on what they learned, to develop advocacy and campaigns for universal access.

This work dovetailed with work NEPHAK was engaged in as a member of the HIV ‘Leadership through Accountability’ programme, a UKAID-funded initiative to help national networks of people living with HIV perform research in order to provide evidence for campaigns for universal access to HIV prevention, testing, care, support and treatment.

“We realise that even with all the HIV services being put into place, TB is a real threat, and TB is the leading cause of sickness and death among PLWHA in Kenya, East-Africa and in Sub-Saharan Africa,” said Otwoma. “So if you talk about universal access for services for people living with HIV, but you have not yet addressed TB and laboratory issues, then you are not yet done.”

NEPHAK identified and trained 20 community leaders on issues of laboratory diagnostics and their role in improving health, and putting people into care and treatment. They held two consultation meetings with communities in high TB/HIV-burdened districts, Nyanza and Nairobi. They interviewed communities and patients who had experience of using labs and explored their perspective in more detail in group forums.  

Overall, NEPHAK found that people are largely not well informed about labs. While some people saw being sent to a lab as a necessary part of finding out what was going wrong with their health, others saw it as ‘a time wasting strategy, as the doctor thinks or prepares’, or an exercise in futility because they were told ‘oh, the technician who does that isn’t here today, or the equipment isn’t working’. People also felt that the laboratories were poorly integrated or had poor communication with other parts of the health service, because someone would go looking for a diagnosis and the TB lab would say, “No, we’ve looked at your sample and you’re okay” when the person was clearly suffering from something.

Building a community response

NEPHAK reached several key conclusions based on this research. “We think it is important to increase knowledge of people and patients...we need to change certain perceptions…and help communities to understand that they have a role to play in lab issues”, said Otwoma.

NEPHAK developed an advocacy campaign to influence policy and sustain political and financial commitment. Otwoma noted that most of the laboratories in Kenya are supported by external resources.

Nevertheless, he said that they have begun to engage the Kenyan government “to help support, to have a domestic fund that can support a component of laboratory – if not entirely – and we are doing this in partnership with the national TB programme, and laboratory managers. And we’ve started in two regions – we have had consultative meetings with those who manage laboratories to just ask what role would they play so that we can work together and to help us understand, and to help push advocacy and engage communities. We also realize that it is still important, even though we are talking about TB laboratories, to engage HIV and AIDS programmes for integration.”

They have also scaled up communication and literacy efforts about TB laboratories, engaging people living with HIV, people who have or had TB and community health workers so that they understand the key issues, and are planning efforts targeting HIV/AIDS programme managers, and those who administer laboratories.

“We hope to explain how communities can play a big role, once they understand, in the response to TB, HIV and MDR-TB – and it is very important to engage the media, to get this word out – especially since our politicians and policymakers pay a lot of attention to the media.”

Their plan has been to use events such as World AIDS Day and World TB Day to call for needed diagnostics and laboratories. They have already held demonstrations, including in front of a facility in the Rift Valley that offers TB treatment but not TB diagnosis (which one has to trek far off to get). They carried banners announcing “No Quality labs, No universal access for PLHIV.” Their message was that the missing link for universal access in Kenya is laboratories and TB diagnostics. Their message to the Minister of Health was that many more people would get on to treatment if they were able to get a diagnosis at the facility.

Otwoma says they have a particular interest in GeneXpert, and the Xpert MTB/RIF test, which they believe could revolutionise the TB response. Since their campaign started, donor partners have responded, and in Kenya a number of facilities now use the GeneXpert test. The government of Kenya is still concerned about cost, but the advocates believe it should still pay a share of the cost of scale-up, at least.

Otwoma highlighted a number of key lessons he believes are emerging from their experience:

• We need to gather patient’s perspective on laboratories…because these communities are going to be useful in creating the demand for quality laboratory services.
• It is important to do training and build the capacity of community leaders and community health workers around laboratories so that it is not left up to the few lab technicians and specialists – because they offer services but they cannot do advocacy and communication for it.
• We need to strengthen partnerships with communities, and patient support groups, including networks of people living with HIV, because TB is a real threat for them.
• We need to support the proactive engagement of patient community representatives in laboratory processes and structures.
• We need ongoing advocacy and communication with our government, and the other governments in sub-Saharan Africa, to invest in GeneXpert and other new TB diagnostic tools that may help us deal effectively with TB and MDR-TB.

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