The necessity of involving common citizens in the ongoing
battle against TB was discussed at the recently concluded Open Forum 4:
Critical Path to TB Regimen: New Hope of Life for TB Patients in Addis Ababa,
TB kills nearly 2 million people every year, 98% of whom are
in the developing world.
TB is the leading cause of death among people living with
HIV; and nearly one third of all reported cases are TB/HIV co-infection. TB
accounts for almost 20% of all deaths and 26% of all preventable deaths in the
age group of 15 to 49 years -the most economically productive age group.
Africa has a very disproportionate burden of TB. It is home
to 12% of the world's population but 30% of the world's burden of TB. 9 of the
22 high burden countries are situated in Africa alone.
Sincere community involvement at all stages is thus crucial
in the fight against this deadly disease-- right from the development of new
treatments to making them available to those in need of them.
The impact of TB is not confined to the patient alone;
illness of an adult can affect the quality of children's lives as well. TB
contributes to the socioeconomic deprivation of families and communities,
resulting in increased poverty and persistent hopelessness. Weak health systems
and inadequate resources are compounding the problem and necessitating
community based programmes to tackle the issue.
According to Dr Jeremiah Chakaya, Chair of the Stop TB
Partnership's DOTS Expansion Working Group, community participation is at the
core of the success of the TB DOTS programme. Health personnel need the help of
community care givers in ensuring that the patient does not default from the
regimen of completing the full six-month course of treatment, typically
involving four drugs. Else, patients might develop drug resistant TB, and in
turn create a significantly large pool of infected people.
Patients' Charter for TB Care is another step in the
direction of ensuring patient/ community participation in TB care. Dr Chakaya
stresses upon the need to empower people and communities for the purpose of
advocacy, communication and social mobilization.
To slow down infection rates, several Southern African
countries have now launched community-based screening, treatment and care
programmes, especially in areas where access to health education and care is
Dr Jane R Ong'ang'o, a Research Scientist at Kenya Medical
Research Institute strongly pleaded for community engagement in TB drug
research to make them understand its benefits. She felt it essential to
facilitate a dialogue between community members, study volunteers and
researchers, and suggested the formation of Community Advisory Boards (CAB),
whose members are drawn from religious/civil leaders, women, youth, health
workers, policy makers and media.
It is essential to:
(i) Educate communities about TB disease, treatment and the
(ii) Understand community perceptions and identify community
concerns so that they are addressed in the research process.
(iii) Liaise with community stakeholders to facilitate
smooth implementation of clinical programs.
(iv) Motivate communities to assist with program/policy
Dr Hind Satti, Clinical Director, Partners In Health,
Lesotho, talked about the success story of the Community based treatment model
operative in all the 10 districts of Lesotho since 2007. Lesotho has a
population of 1.8 million, where 12,275 new cases of TB were notified in 2009.
It has a very high prevalence rate of HIV, with 80% of all TB patients being
Adherence to the treatment regimen is crucial to success of
TB cure. But there are many barriers to this adherence, chiefly in the
form of socioeconomic obstacles. The Lesotho model has addressed these barriers
successfully by means of community mobilisation. Currently around 550 patients
are enrolled in the community based treatment programme. The treatment
supporters come from the community and form a rapport with the affected family.
They accompany the patient to all clinical visits, and also provide
psychosocial support to the patient and his/her family. They are trained by the
local healthcare centre to observe all drug doses, report any side effects,
administer injections, and screen for HIV/TB infections in household contacts.
Dr Satti feels that "Diagnosis and management of all
types of TB, including MDR-TB in high HIV prevalence settings is challenging
but possible with the help of community - for rapid enrolment and close
monitoring of side effects."
Community activist, Nelson Otwama, from Kenya, also believes
that the community can help in a big way by educating about the disease,
treatment, cough etiquette, reduction of stigma and isolation, resource
mobilization and advocacy to support the adoption of new MDR regimens by
national TB authorities.
Another advocacy manager and patient representative, Francis
Apina said that community input is a critical component of the research
process. It is actually stigma, isolation and quarantine versus community based
care. Inadequate patient information and education, social barriers and stigma
- all add to the challenges with the current treatment regimens which is
Francis feels that "current TB drug regimen is
inadequate and presents many challenges of treatment; such as pill burden,
length of treatment, incompatibility with ARV, non-compliance, the emergence of
MDR and XDR-TB. Current treatment is still inadequate to address the challenges
of TB/HIV and drug-resistant TB. New tools to quickly diagnose and more
effectively treat and prevent TB are desperately needed."
Hence we need community advocates to talk about clinical
trials to the voluntary study groups; community mobilizers to help clinical
trials to succeed; community educators to urge people living in infected
areas to go for TB/HIV screening; and community care givers to help the
patients to strictly follow the treatment regimen and not lose hope, despite
Only then will the Critical Path To TB Drug Regimens (CPTR)
will make an impact by accelerating the development and delivery of new and
improved TB treatment regimens, and by sharing data among the CPTR partners
promotes an efficient development model that puts patient needs first. New
treatments should not become the privilege of a select few, but should be made
available to all those in need.
Contributed by: Bobby Ramakant