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Opinion Comment
Published: March 24, 2014 01:33 IST | Updated: March 24, 2014
01:33 IST
A million missing patients
Nalini Krishnan
Until activists and patients question approaches to prevention,
diagnosis and treatment, TB will continue to plague us
Tuberculosis in India is big: 2.3 million cases, 30,000 deaths,
a million missing patients. These terrifying numbersremind us of a
continuing crisis when every TB death is preventable. Behind these
numbers are innumerableunheard stories of human suffering of
misdiagnosis, inappropriate treatment and lack of access to care
resulting inchronic illness and death. Why are these stories not
heard? Because TB patients remain silent, disenfranchised, andfind
no platform to voice their issues. And they dont have champions for
their cause.
A complex interplay
Tuberculosis is not just a clinical issue. Its management
requires the interplay of clinical medicine, social
sciences,factors of equity and right to health. Ironically, this
complex interplay is what prevents patients from accessing care
early, which is vital to preventing deaths.The patient-centred
approach is supposed to be the hallmark of the DOTS system of
delivery under the RevisedNational TB Control Programme, RNTCP,
where the caregiver becomes entirely responsible for ensuring that
thepatient takes drugs regularly and completes the treatment.
However, the programme has not factored in andadequately addressed
a critical issue a patients right to choose the provider. Closely
linked to this is the issue ofconfidentiality, given the
stigmatisation of TB patients in the community and by health
providers themselves. Inaddition, the public health system has not
taken into account the need for social and nutritional support.
There arestructural issues of delivery as well. TB control services
are delivered through a vertical mechanism that is notintegrated
into primary health care delivery, which is the first point of care
in public health services. This is whydespite the RNTCP offering
free diagnosis and treatment everywhere, patients prefer private
providers.
More than 60 per cent of patients choose a provider from the
private sector, most often the point of first contact. But
here they have no protection against inaccurate testing or
irrational prescriptions. Poor administration of drugs alongwith
irrational prescriptions and unregulated sale of anti-TB drugs fuel
the transmission of drug-resistant TB. Yet, thegovernment seems
disinclined to regulate the private sector.
The silence around these challenges is deafening. It is
disturbing that even with such catastrophic impact, few TBpatients
and activists are empowered enough to question the quality of
preventive and curative services that exist.However, until tough
questions are asked both in the public and private sector, TB will
continue to plague us.
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There is an urgent need for activists and patients to speak up
and question approaches to prevention, diagnosis andtreatment. We
need to question the purely clinical approaches. Within the public
health system we also need todemand the inclusion of civil society
in the planning and review of the anti-TB programme at the
national, State anddistrict levels. However, for all this, patients
and activists need funding to build empowered communities.
From the private sector, activists must seek accountability in
the areas of diagnosis and treatment. Also, serology-based testing
for TB should be banned and mandatory notification of TB cases made
compulsory.
There is a need to strengthen community engagement to ensure
open participation, empower the patient, family andcommunity with
information and knowledge to speak out for their rights and for
public health safety.
There are learnings from experiences in the fight against
HIV/AIDS. Not only were patients empowered enough toquestion the
credibility of health systems but they were an integral part of
decision-making processes.
TB could affect anyone, irrespective of social or economic
status as it spreads through the air we breathe. We needopinion
leaders, concerned citizens and public figures to become champions
in the fight against TB.
As a society and a community we are failing not only these
patients but also ourselves by not demanding the rights ofpatients
to high-quality care and management. Until everyone speaks out, and
embarks on collective action to fightTB, India will continue to
lose lives, and the missing million will not be accounted for.
(Dr. Nalini Krishnan is the Director of REACH, a
non-governmental organisation working for care and support ofTB
patients in Tamil Nadu.
E-mail: [email protected])
Keywords: Tuberculosis, TB treatment, TB diagnosis, TB deaths,
TB prevention, DOTS system, TB controlprogramme,World TB day,
Printable version | Mar 24, 2014 9:20:08 PM |
http://www.thehindu.com/opinion/op-ed/a-million-missing-patients/article5823011.ece
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