|
A violation of citizens’ rights: The
health sector and tuberculosis
One’s understanding of the problem of tuberculosis affects the
choice of intervention strategies
Thelma Narayan
http://www.issuesinmedicalethics.org/073mi075.html
Indian Journal of Medical Ethics
Tuberculosis was recognised by the
new government of independent India in 1947 as one of the country’s
biggest public health problems. Interventions were introduced in 1948.
This formed part of the government’s constitutional mandate and pledge
to protect and promote the health and well being of its citizens. BCG
vaccination within a vertical programme was the main strategy with a
focus on urban areas and children, among whom TB was then considered to
be the major problem. With limited finances, it was felt that prevention
was the best approach. Fortunately, indigenous research was initiated
and supported by the government through the establishment of new
institutional bodies, in order to understand the problem better.
Over the years, research findings
challenged then current assumptions and gave shape to the National TB
Programme (NTP) in 1962. By this time, effective chemotherapy was
available at low cost. Better drug regimens were developed by the 1970s.
The functional unit of the NTP was the District TB Programme (DTP). BCG,
early case detection, domiciliary chemotherapy , integrated with general
health services, supported by District and State TB Centres were
conceptualised as the key strategic components. The NTP idea influenced
TB control programmes globally through the WHO. Later, the world’s
largest controlled BCG trial in Chinglepet, India, found that the
vaccine did not prevent adult pulmonary TB and that it played no role in
controlling disease transmission.
Infrastructure for the NTP at state
and district levels began to be established and team training of DTP
teams was undertaken. Major problems in implementation became recognised
and were reported by the government and other research institutions and
bodies from the early 1970s. However, these findings and evaluation
reports resulted in little change in action and performance.
Poor implementation has resulted in
more than half a million deaths annually. Thus, from 1947, about 25
million people have died of a disease that has been curable at low cost
from the 1960s. Many more millions suffer needlessly. The poor, at
greatest risk, are most affected, having less access to effective care.
A proportion get functionally disabled due to advanced disease and a
substantial proportion also become indebted due to the disease.
Understanding and defining the
problem
Policy makers and
planners conventionally define and therefore understand the problem of
Tuberculosis within epidemiological, bio- medical, public health and
programmatic parameters. This is necessary and important and these
dimensions are outlined in the next paragraph. However. they are
insufficient to bring about a change in practice or in implementation of
the programme. Hence, they are insufficient in producing an impact on
the preventable disease burden among people and populations.
Epidemiological dimensions of
disease burden: Tuberculosis has been known and named in India as Rajya
Roga, the king of diseases, since many centuries. High rates of
infection and disease have been noted from the early 20th century.
Before this, it was reported to be more rare or infrequent.
A large proportion (30-52%) of the
population gets infected. Only a small proportion of those infected
break down into disease at some point of time. The disease in all its
forms (lung and extra- pulmonary disease where other organs are
affected) currently affects 1.6-2.2% of the population. This is the
disease prevalence. It is inclusive of 0.3-0.4% of people suffering from
sputum positive TB of the lungs who are infectious to others. Public
health planners focus on diagnosis and treatment of this smaller
sub-group of patients with the hypothesis that the chain of transmission
would be cut and the disease would be controlled. Patients with negative
sputum smear, active pulmonary TB or with childhood or extra- pulmonary
TB, being noninfectious and consequently not threatening society,
receive cheaper, less effective drug regimens, through physically
suffering as much or more. Justified by resource constraints, this
policy is discriminatory and represents societal relations and state
priorities.
The disease and infection prevalence
rates with age and TB is largely an adult problem, with 8% occurring in
children. While disease prevalence is higher among poorer socio-economic
groups, this fact does not receive any particular policy attention.
Disease prevalence is lower among women then men. But women have less
access to general health care and hence possibly to TB care. More young
women in the reproductive age die of TB than of other causes.
Though declining, the mortality from
this preventable and curable disease is still unacceptably high at
50-84/ 100,000.
Currently India has approximately
13.5 - 17 million TB patients of whom 3.6 million are infectious. In
absolute numbers, more persons are affected now than in 1947. While this
is due to demographic or population growth, it also indicates that
control strategies and interventions have been ineffective.
TB is equally prevalent in rural and
urban areas. With a predominantly rural population of 74%, the TB
problem is thus largely rural based. Patients are widely dispersed with
roughly 10-12 patients in each village. This requires widespread basic
health care services in order to make TB care available and accessible.
These epidemiological understandings and other findings derive from
several good quality research studies undertaken by government research
institutions.
Public health and programmatic
parameters :
These include rates concerning case-finding, case-holding, default,
relapse and treatment failure. The research bodies mentioned above and
others have repeatedly and consistently reported gaps between expected
performance and outcome (1, 2, 3). After 40 years of intervention into
what was termed India’s most important public health programme, only
approximately 8-16% of expected cases of TB received complete treatment
from the public health services annually (4). Case detection in 1987 was
1/ 4 th the annual incidence of TB (2). This was too low for any
significant impact on the problem. Only 27% of those starting treatment
made 12 or more monthly drug collections from 1982-86. Furthermore, poor
functioning of the programme among those registered / treated is
indicated by high case fatality rates [25% in a district using short
course chemotherapy (Datta et al 1993)], high ratios of increasing drug
resistance. This scenario is further compounded since the mid 1980s by
HIV-TB co-infection, rates of which are increasing. A review in 1992
stated that “The programme is not having a measurable impact on
transmission and appears to function far below its potential.” (3)
Policy process perspectives : The
technical indices mentioned earlier though crucially important, do not
explore or reveal the reasons for the dismal scenario or for the
disparities and discrimination that exists within those affected by TB.
It has been observed that techno- managerial approaches to TB control
policies are insufficient to grasp important sociopolitical and policy
process factors that influence and determine implementation (15).
Underlying epidemiological and public health indices are conflictual
societal relations and interests which surface in sectoral action and
non-action. These include inadequate manufacture of TB drugs by
pharmaceuticals despite indigenous availability of technology and
expertise. Production meets market demands but not epidemiological need
(6) and government Primary Health Centres and District TB Centres
chronically report inadequate and irregular drug supplies, preventing
good chemotherapeutic practice. There has been a lack of research into
newer TB drugs till the re- emergence of TB in “developed” countries.
Another factor has been the promotion of the growth of the private
medical care sector, which dominates TB care with little regulation or
standardisation of diagnostic and treatment practices. Irrational
prescribing practices for TB by private practitioners (7),
over-medication and over-diagnosis of X- ray positive suspects benefits
the industry and providers. The poor are financially unable to complete
treatment with the private sector.
Distressingly high rates of
indebtedness have been reported among this impoverished group of
patients (8, 5). This pushes their families further into the cycle of
poverty, which with the associated under-nutrition and poor housing is
itself a breeding ground for TB.
Governmental neglect of the NTP is
evident in the under-financing of the programme, which received only
about 1.5% of the Central health budget till a few years ago. Budgets
below critical levels, with most expenditure on salaries and maintenance
rather than on effective services are wasteful and counterproductive.
Drug resistance in TB due to low funding and consequent irregular, poor
quality drug supplies is additionally harmful and costly, besides
violating the human rights of patients and society.
In the absence of effective public
sector services, 80% of health care utilisation occurs in the private
for profit and voluntary sector. Rough estimates suggest considerable
national spending on TB, with gains accruing to the diagnostics and drug
industries and to medical professionals whose macro interests differ
from those of patients and of public health (5).
Weakness in State intervention is
further evident in infrastructural gaps in the public health care
system. For instance, the large proportion of vacancies in microscopists/
laboratory technicians posts at Primary Health Centres (PHC) makes
diagnosis difficult. Frequently absent staff (including doctors), and
rude behaviour towards patients, particularly the poor, also aggravates
the situation. It has been found that the programme is the weakest at
the PHC level, which was conceptualised as being the main interface
between the majority rural population and the general health service
with which TB care was integrated. This was the point closest to
peoples’ homes. The District TB Centres, supposedly the technical
backbone of the programme are reduced to being curative centres for
those living nearby. In the absence of adequate trained staff and
vehicles, their more important role of providing professional leadership
and support through training, supervision, analysis of records and
research is not performed. Poorly functioning and weak peripheral
institutions serving the majority rural population, reflect power
relations in society and comprise an important reason for poor
implementation. Even here, better off patients can access the private
sector or the services of the government sector for a fee, exemplifying
the stratification of society and the lack of entitlement of the poorest
to essential health care. This stands in sharp contrast to the Family
Welfare programme, with its population control undertones, which
received Rs. 65,000 million or 1.5 % of the total Ninth Plan Outlay
(1992-97) as against the entire Health budget which received 1.7% of the
total plan outlay. Another contemporary comparison is with the national
AIDS programme which in the early 1990s received 25% of the central
health budget though its epidemiological magnitude is much smaller than
TB. The use of conditionalities and aid as leverage for policy change,
by multilateral and bilateral agencies is one of the factors responsible
for this.
More broadly, support to the growth
of an unregulated private for profit sector, including the
pharmaceutical sector, has undermined the NTP and public sector. Direct
and indirect policies such as subsidies to education producing graduates
for the private sector, support to capitation fee medical colleges,
allowing or turning a blind eye to private practice by government
medical officers and others have promoted the private sector. Thus TB
services were made available in the market. More powerful sections of
society with ability to pay access these private services reducing
pressure on the public sector to perform.
Implication of problem
definition on strategies
It has been hypothesised
that the way one understands the problem of TB influences the choice of
intervention strategies (5). This is indicated in the table above.
These are not either/ or approaches.
One needs to recognise that groups working at different levels are in
solidarity with one another and better linkages and alliances across
sectors would be beneficial.
Another illustration is the
strategies employed, depending on the way in which an issue such as
default gets understood. In one approach, patient related failures and
factors get stressed with an element of victim blaming, without
adequately addressing health system failures or the circumstances of
deprivation and difficulty in which the person lives. This approach then
focuses on patient education that may be guilt producing and on
supervised therapy to ensure compliance. This is justified on technical
grounds of preventing transmission and development of drug resistance.
Other approaches see default as also resulting from poor TB case
management deriving from systemic failures of the health and related
services. This approach would stress the need for increased funding,
improved infrastructural functioning (with microscopes, microscopists,
doctors, uninterrupted drug supplies, follow-up by health workers,
management of concurrent illnesses/ drug side- effects/ complications
etc.), support and supervision and humane attitude and behaviour of
health personnel with patients. While theoretically an integrated
approach is used, in practice, the second approach has been greatly
neglected by the state sector in India. The experience of NGOs who have
adopted these approaches show much better success in terms of cure rates
and patient satisfaction.
Impact of implementation gaps
on patients, families and society
Loss of life often in young adulthood, disablement and indebtedness
comprise the heavy price paid by patients and their families. this
situation is particularly true for the poor. While the middle class and
rich also get TB, they have access to early care and cure and hence do
not suffer these consequences.
The economic loss to patients,
families and the nation is significant, while suffering is immeasurable.
Economic costs from TB have been estimated at Rs. 20,000 million a year
through person hours of work lost (10). Indirect costs of treatment to
affected families are high, including transport, food, costs of
accompanying person, loss of economic productivity of the patient and at
least one other member of the family. These are larger than direct costs
of diagnosis and treatment (8).
It is a reflection of the structure
and priorities of our society that we spend millions obtaining the
latest medical technology, even in government institutions to diagnose
relatively untreatable conditions, while resource constraint arguments
are put forward to fund the treatment of killer diseases like TB which
can be diagnosed relatively easily and cured. When one considers the
amounts spent for sports extravaganzas and defence of borders, the
disparities become more stark and obscene. Somehow, the loss of half a
million lives is not considered a national security problem calling for
the best and urgent social defence. Some lives perhaps are more
important than others.
The magnitude of the human problem
caused by TB, especially with its current co-infection status with HIV
is such that it is ethically imperative for all to respond in some
measure. If morals do not convince, at least the instinct of self-
preservation should. The spectre of drug resistant TB may touch anyone.
The government sector has to be pressured to perform with a sense of
accountability. This is because the major source of funding of the
government health services is from the tax- payer who is largely the
common person, as indirect taxes form the major source. Also, the
Government has now taken a large loan from the World Bank for the TB
programme on which interest will be paid, also by the tax payer.
Besides, it is a Constitutional mandate. For NGOs, critical
collaboration needs to be established with the Government in which one’s
watching role and issue raising capacity as citizens of the country need
to be acknowledged. this should not be swamped over by playing the
alternate service provider role which is what may often be looked for.
NGO expertise, personnel and services need to be specifically focused on
the poor. While the role of the private sector is recognised, regulation
of standards of care in maintaining accepted norms in diagnosis and
treatment needs to be ensured. the public sector will have to be a major
actor in what is still a major public health problem. It has to take the
responsibility of ensuring implementation of its own strategy of early
diagnosis and provision and completion of effective treatment and
supportive care for all forms of TB in partnership with the major
stakeholders of the programme, namely, the patients. This requires the
strengthening and non-fragmentation of basic health care services
through Primary Health Centres in rural areas and Municipal Corporation
Dispensaries and hospitals in urban areas. Additionally, social security
and rehabilitation measures for advanced cases is required. More
flexible, area specific, community- based, humane approaches are
required. These have proven to work in India and elsewhere. In spite of
adverse economic trends, countries like Cuba have achieved success in
their TB control programmes.
We need to be alert regarding the
functioning of the NTP and supportive of TB work in whatever way we can.
TB is also in a way, a case study, and, much of what is said would be
applicable to infectious disease and more importantly, to general health
care services.
References :
1. ICMR (Indian
Council of Medical Research), 1975. A Review of the National
Tuberculosis Programme. Report of the ICMR Expert Committee. ICMR, New
Delhi.
2. ICORCI (Institute of Communication, Operations Research, and
Community Involvement), 1988 In- depth Study on National Tuberculosis
Programme of India. Unpublished Report for GOI. ICORCI, Bangalore.
3. GOI/ WHO/ SIDA, 1992. Tuberculosis Programme Review: India 1992.
Unpublished Report. GOI/ WHO, New Delhi and Geneva.
4. Radhakrishna S, 1998. Direct Impact of Treatment Programme on
Totality of Tuberculosis Patients in the Community. Ind J Tub. 35,110.
5. Narayan T, 1998. A Study of Policy Process and Implementation of the
National Tuberculosis Control Programme in India. PhD Thesis, London
University.
6. ICSSR/ ICMR ( Indian Council of Social Science Research and Indian
Council of Medical Research), 1981. Health for All: An Alternative
Strategy. Indian Institute of Education, Pune.
7. Uplekar MW and Shephard DS, 1991. Treatment of Tuberculosis by
Private General Practitioners in India. Tubercle. 72, 284- 290. |
8. Uplekar MW and Rangan S, 1996. Tackling TB: The Search For Solutions.
Foundation for Research in Community Health, Bombay.
9. Ganapathy RS, 1985. On Methodologies for Policy Analysis. In general
Practitioners in India Ganapathy R. S. et al (Eds) Public Policy and
Policy Analysis in India. Sage Publications, New Delhi.
10. Ram Kumar ER, June 5- 11, 1993. The Illustrated Weekly of India.
|
