Headline: Delay in diagnosing will increase infectivity and spread of Tuberculosis

The prescription for elimination of highly contagious but completely curable disease,
Tuberculosis, involves increasing awareness and removing stigma associated with the
disease and ensuring treatment adherence.

It takes more than diagnostic accuracy and efficient medical management to treat
Tuberculosis, a dreaded disease that largely affects the lungs. Along with the right medical
procedures and practices, what makes the difference in curing, and preventing spread of this
highly contagious disease is bringing about a radical change in the way the society looks at
TB patients. This calls for removing the stigma attached with anyone contacting the disease
through a concerted awareness creation drive to build the right perception that the disease is
completely curable, and enthuse community participation that is very essential for effective
elimination of the disease.
Blossom Trust, is a grassroots NGO carryout various Health projects in Tamil Nadu. Over the
year Blossom is implementing CC TATA (Civil Coalition for TB Advocacy and Treatment
Adherence) with the support of Stop TB Partnership / UNOPS, to work out and ensure a
person-centric delivery of TB programs to encourage community engagement and promote a
gender-responsive approach to tackling the disease. Blossom partnered with the Bangalore
based think tank, Research PAC (Public Affairs Centre) to carry out an intensive study of TB
patients in three districts of Tamil Nadu – Madurai, Ramanathapuram and Virudhunagar – as
part of a project CC TATA that aims at bridging the gap between government policies on TB
and actual ground reality in realistic management of the disease.
Project CC TATA Project focuses on training and advocacy and is built upon the foundations
of the Rainbow TB Forum, a network comprising exclusively of people, who have been
either afflicted by TB in the past or are patients at present.
The key finding of the research study on the behaviour of TB patients and survivors was that
any delay in approaching healthcare system after noticing the symptoms increased the risk of
transmission of the disease, thus posing a risk to the society. Now, this costly delay of
reaching health professionals could be due to social stigma attached to TB and lack of
awareness about the disease and treatment available, the study found.
Prolonged delay leads to increased infectivity in the community and severe morbidity. The
lack of awareness about TB and the stigma associated with the disease also contribute to
delays in seeking treatment. Thus, it is essential to enhance awareness among the generation
population about the nature of the disease and the surety of a complete cure when treated
early. Along with creating awareness, screening programs for active case finding may be
arranged at the community level.
The delays in diagnosis and medical treatment are particularly higher among women than
men due to cultural and financial reasons. Women infected with TB are likely to undergo
stigma and rejection from their family members and their community. This may lead to
discontinuation of the treatment. Unemployed women may be restricted from timely access to
health care due to financial limitations. This leads to poor adherence to treatment and follow-
up among women.
The study was conducted to understand the Health Seeking behaviour among TB
patients/Survivors, to find reasons for not seeking care or delay in seeking care, and to know
the various socio-cultural factors associated with health-seeking, and gender-based health-
seeking behaviour.
TB is a highly infectious but a curable disease that is caused by the
bacillus Mycobacterium tuberculosis, and spreads through the air when Lung-TB-infected
people expel bacteria through sneezing or coughing.
About a quarter of the global population is estimated to have been infected with TB, but most
people do not develop the disease. Of the total number of people who develop TB each year,
about 90% are adults, with more cases among men than women. The disease typically affects
the lungs but can affect other parts of the body as well. The management of TB and those
afflicted with TB requires a coordinated effort between Governments (in terms of TB-centric
policies), healthcare professionals, patients, and society at large (for de-stigmatization of the
disease).
The study highlighted the fact that TB is nearly always curable with effective, uninterrupted
antituberculosis therapy. Treatment adherence is critical for the cure of individual patients,
controlling the spread of infection, and minimizing the development of drug resistance. It is
known that incomplete adherence to treatment is the most serious problem in TB control and
a major obstacle in the elimination of the disease.
The CC-TATA program has, in the past few years, worked towards encouraging adherence to
TB treatment among more than 300 patients in the 3 districts through the Peer to Peer
activities driven by trained TB champions/Advocates.
The chosen TB advocates of each of the districts promote advocacy, create awareness, and
peer-to-peer support throughout treatment, and promote treatment compliance for TB
patients, sensitization and stigma reduction, screening, and referral. Through these advocates
and advocacy initiatives, Blossom Trust has worked closely with TB healthcare systems,
workers and policymakers and reached more than 1000 stakeholders in TB management.
Blossom Trust also recently organized an online State Level Conference for the CC-TATA
project to discuss the challenges faced by communities and women and factors that influence
adherence to TB treatment.
TB stakeholders civil society network members, Rainbow TB forum members, and national
and international stakeholders participated in the conference and shared their views on the
challenges in eliminating TB, the gender perspective of TB, and the role of the community in
reaching the target set by the United Nations High-Level Meeting (UNHLM) on TB of
ending the global TB epidemic by 2035.

OVERCOMING CHALLENGES

The healthcare professionals and civil society members were unanimous that health camps
must be conducted in high-risk villages for early identification and diagnosis of the disease.
Extensive awareness campaigns targeted at high-risk communities can also help in dispelling
the myths and fears associated with TB. Another important approach to overcoming the
current challenges in TB management is the provision of counselling to patients and
caregivers to stress the importance of treatment adherence. Health workers must be trained to
address the stigma associated with the disease, especially among women.
Such awareness campaigns and counselling would help educate patients, especially women
on practical issues like how to talk to one’s family about TB and enlist their support in its
cure. The integration of TB services with other reproductive, maternal, and child health
services would enable women to avail of the treatment facilities for TB without fear of stigma
or financial burden.
Ends

Health care seeking behaviour with onset of

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Health care providers who made initial diagnosis

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 Causes of delay in seeking health care
facility
80
74 Hope their symptoms
would go away on their
70 own

Fear of what would be

60 58 found in the diagnosis

Economic constraints
50
Fear of social isolation
40 others

30 29 No one is there to take

me to the hospital

20 19 19 Not having time to

15 approach health facil-
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10 8 Unsatisfied with staff
2 attitude
0 Poor quality of health
Causes of delay in seeking health care
facility services
 Sixteen years ago, I lost my husband to HIV/AIDS and was
struggling to raise my daughter. Two years ago, I was diagnosed
with tuberculosis. I thought my life was over and my health took
a turn for the worse at that time the continued support and
encouragement of the BLOSSOM staff, I recovered from the
infection. I attended the meetings of the Rainbow TB Forum and
the speeches of those who had been infected and recovered
from TB gave clarity and a new insight. Through the CCTATA
project, I participated in the TB Advocates training and became a
T. Panchavarnam TB Advocate. I am currently working as a TB Advocate in
TB Advocate Virudhunagar district Aruppukottai Block with Blossom Trust and
NTEP in eradication of TB. In my block, I providing Awareness, peer-to-peer support to
default and new patients, offer counselling to the affected community and family counseling,
and organize block-level RTBF meetings. My role as a TB advocate has given my life a new
beginning and a meaning. It is a pleasure to be a part of the effort to eradicate TB in my.