A key issue expected to be highlighted at
the 3rd 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 42nd Union World Conference on Lung Health, last
“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.”
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
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
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.
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
“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.”
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.
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
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
- 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.