Executive summary
Introduction
What are human
rights?
TB and human rights
TB and poverty
TB and children
TB and women
TB, migrants, and refugees
TB and prisons
TB and substance abuse
TB and HIV
Conclusion
Annex—Additional
contact information
Executive
summary
Tuberculosis (TB) is
deeply rooted in populations where human rights and dignity are limited.
While anyone can contract TB, the disease thrives on the most
vulnerable—the marginalized, discriminated against populations, and
people living in poverty.
This guide examines the
human rights dimensions of issues affecting people’s vulnerability to
contracting TB and their access to TB cure. It looks at specific groups
and settings where people are particularly vulnerable to TB and its
impacts; and where, if they become sick with TB, are limited in their
access to treatment—limitations created by stigma, lack of adequate
information, and inadequate resource allocations to those most in need.
The principle of
nondiscrimination is fundamental to public health and human rights
thinking and practice. Gender discrimination, for example, in addition
to directly affecting vulnerability to TB and access to TB services, can
deny girls and women access to education, information, and various forms
of economic, social, and political participation that can increase
health risk.
Neglect of the right to
information can also have substantial health impacts. Misinformation
about what causes TB, how the disease is transmitted and whether it can
be cured is linked to the stigmatization of TB and of people with TB.
Children in households with TB may also be taken out of school or sent
to work. Both situations deprive children of their right to education
and put them in situations that may expose them to more prolonged
contact with persons with active TB.
Women, children,
migrants and refugees, people in prison, and people living with HIV are
some of the groups whose vulnerability to TB is discussed.
Prisons are examined as
an environment that increases vulnerability to TB. It is argued that
"because tuberculosis is easily diagnosed, treatable, and curable
but may lead to death if neglected, contracting tuberculosis and not
getting treatment because of poor prison conditions may be considered to
be a violation of human rights."* Both the prison population and
the general community have the right to protection from TB generated in
prisons and other institutions.
The need to address TB
and HIV together in light of the human rights dimensions is urged.
Conditions that enhance vulnerability to TB—poverty, homelessness,
substance abuse, psychological stress, poor nutritional status, crowded
living conditions—also enhance vulnerability to HIV. Both epidemics
register their highest rates of infection among populations that are
typically disadvantaged or marginalized in their own societies.
The dual epidemic of HIV
and TB raises issues of individual choice and confidentiality.
Individuals have a right to privacy that protects them against both
mandatory testing and disclosure of their health status. Individuals
also have a right to education and information about TB, HIV, and the
synergy between the two infections so that they can make informed
choices about testing and treatment options.
"A health and
human rights approach can strengthen health systems by recognizing
inherent differences among groups within populations and providing the
most vulnerable with the tools to participate and claim specific
rights."**
Human rights is also
presented in the document as a tool for data collection and analysis.
Human rights principles and norms are relevant when choosing which data
are collected to determine the type and extent of health problems
affecting a population. Decisions on how data are collected (e.g.
disaggregated by age, sex) also have a direct influence on the policies
and programmes that are put into place. Collection of data should be
disaggregated and analyzed to draw attention to subpopulations,
particularly those vulnerable to TB, in order to ensure that
discrimination can be detected and action taken. Attention must be paid
to involving the most vulnerable and marginalized sectors of society in
setting priorities, making decisions, and planning, implementing and
evaluating programmes that may affect their development.
Human rights puts the
individual at the centre of any health policy, programme or legislation.
Active, free, and meaningful participation of individuals is an integral
component of a rights-based approach.
A human rights approach
to TB is proposed as an avenue for social mobilization to stop TB.
Social mobilization is defined as a broadscale movement to engage
people’s participation in achieving a specific goal. It involves all
relevant segments of society: decision and policy-makers, opinion
leaders, nongovernmental organizations such as professional and
religious groups, the media, the private sector, communities, and
individuals. Social mobilization is a process of dialogue, negotiation,
and consensus for mobilizing action that engages a range of players in
interrelated and complementary efforts, taking into account the felt
needs of people. The interdependence of human rights, for example the
right to nondiscrimination and the right to information as integral to
achieving the right to health, and the need for all levels of society to
be mobilized around the core principles of human rights, calls for a
social mobilization approach.
Health systems and health
care delivery are increasingly taking human rights norms and standards
into account. This is reflected in a new focus on questions such as: is
there equality of access? Are privacy and confidentiality maintained? Do
the providers practice nondiscrimination? Is there sufficient attention
to vulnerable groups? Experience has demonstrated that when health
systems take these and other human rights issues into account, patients
and public health are both far better served.
This document is not
intended to be a comprehensive account of all aspects of human rights
that can affect people’s vulnerability to TB and the related risks and
impacts. Rather, it examines equity and some key human rights principles
such as freedom from discrimination and the right to information and
education in order to generate new thinking and action in the global
response to stop TB. It is acknowledged that considerably more work
needs to be done to further develop the understanding and mobilize
action on TB in relation to human rights.
* Levy M, Reyes H,
Coninx R. Overwhelming consumption in prisons: Human rights and
tuberculosis control. Health and Human Rights, 1999, (1): 166–191
** HSD Working Paper:
Health and Human Rights. Geneva, World Health Organization, 2000
(unpublished document; available on request from Sustainable
Development and Healthy Environments, Department of Health in
Sustainable Development (SDE/HSD), World Health Organization, 1211
Geneva 27, Switzerland).
Introduction
"Tuberculosis is
not (only) a health problem. It is a social, economic, and political
disease. It manifests itself wherever there is neglect, exploitation,
illiteracy and widespread violation of human rights."1
Director, South Asia
Panos Institute
Tuberculosis (TB) is
spread by an airborne microorganism, Mycobacterium tuberculosis.
It can be argued, however, that the real cause of the spread of
TB—particularly of TB epidemics in specific populations—is not so
much the microbe as it is a complex set of socioeconomic and political
factors outside the realm of human biology. These factors affect
people’s vulnerability to contracting TB and limit their access to
treatment and cure.
TB is deeply rooted in
populations where human rights and dignity are limited. While anyone can
contract tuberculosis, the disease thrives on the most vulnerable—the
marginalized, discriminated against populations, and people living in
poverty.
Every year, eight million
people become sick and nearly two million people die of TB. TB kills
over 250 000 children each year and is the leading infectious cause
of death among young women. People living with HIV are especially
vulnerable to TB, and the HIV/AIDS pandemic is fueling an explosive
growth of new TB cases. TB is the leading killer of people with HIV. The
direct and indirect costs of TB can be devastating to individuals as
well as to families. The cost to high TB burden countries is
overwhelming. Worldwide, every year, TB-related illness and deaths cause
the loss of millions of potentially healthy and productive years of
life. This is all in the face of an available, cost-effective cure.
Vulnerable and
marginalized populations bear an undue proportion of health problems.
Overt or implicit discrimination violates one of the fundamental
principles of human rights. It often lies at the root of poor health
status and results in the lack of targeted policies and programmes and
of access to services and other government structures relevant to
health.
Many factors can
contribute to one’s vulnerability to TB. Being poor, of a minority
group, a migrant or refugee, a child, a prisoner, or having a weak
immune system due to HIV or substance abuse are all factors that can
make someone more likely to become sick with TB.
Why does there
continue to be so much illness and death due to TB despite the fact that
as little as US$ 11 per person can buy six months of TB drugs
needed to cure TB?
Vulnerability can
begin to be reduced by modifying laws, policies, regulations, or
practices that discriminate against specific populations.
This document looks at
the human rights dimensions of issues affecting people’s vulnerability
to contracting TB and their access to TB cure. It examines particular
groups and settings where people are particularly vulnerable to TB and
its impacts and, if they become sick with TB, are limited in their
access to treatment—limits created by stigma, lack of adequate
information, and inadequate resource allocations to those most in need.
This document is not
intended to be a comprehensive account of all aspects of human rights
that can affect people’s vulnerability to TB and the related risks and
impacts. Rather, it examines equity and some key human rights
principles, such as freedom from discrimination and the right to
information and education, in order to stimulate new thinking and action
in the global response to stop TB. It is understood that considerable
more work needs to be done to further develop the understanding and
mobilize action on TB in relation to human rights.
Why TB and human
rights in guidelines for social mobilization?
Human rights
"necessitates a cross-sectoral approach… Increasing synergy
amongst the various sectors relevant to health and development should be
promoted and fragmented interventions avoided."2 The
interdependence of human rights—i.e. the right to nondiscrimination
and the right to information as integral to achieving the right to
health—and the need for all levels of society to be mobilized around
the core principles of human rights call for a social mobilization
approach. Human rights emphasizes empowerment, participation, and
nondiscrimination.
"A health and
human rights approach can strengthen health systems by recognizing
inherent differences among groups within populations and providing the
most vulnerable with the tools to participate and claim specific
rights."3
Social mobilization is
defined as a broadscale movement to engage people’s participation in
achieving a specific goal. It involves all relevant segments of society:
decision and policy-makers, opinion leaders, nongovernmental
organizations such as professional and religious groups, the media, the
private sector, communities and individuals. It is a process of
dialogue, negotiation and consensus for mobilizing action that engages a
range of players in interrelated and complementary efforts, taking into
account the felt needs of people.
Social mobilization
recognizes that sustainable social and behavioural change requires many
levels of involvement—from individual to community to policy and
legislative action. Isolated efforts cannot have the same impact as
collective ones. Advocacy to mobilize resources and effect policy
change, media and special events to raise public awareness, partnership
building and networking, and community participation are all key
strategies of social mobilization.
Social mobilization
starts with an honest recognition of the problem to be addressed. The
state of the epidemic and an awareness of contributing factors all need
to be assessed and acknowledged. The public needs to know their own
vulnerability as well as what can be done in order to support, for
example, positive acceptance of people with TB and support for
appropriate policies and programmes. Once there is an understanding of
the issues, potential partners need to know what role they can play.
Promoting specific practical ways to participate, relevant to the
strengths and mandates of organizations, communities and individuals, is
key to successful mobilization.
What
are human rights?5
Article 12 of
the International Covenant on Economic, Social and Cultural Rights (ICESCR):
"The States Parties to the present Covenant recognize the right of
everyone to the enjoyment of the highest attainable standard of physical
and mental health."4
Human rights refers to an
internationally agreed upon set of principles and norms by governments
that are contained in treaties, conventions, declarations, resolutions,
guidelines, and recommendations at the international and regional
levels. In the 50 years since the adoption of the Charter of the United
Nations, specificity has been given to the term "human rights"
by the adoption of the Universal Declaration of Human Rights (UDHR) and
numerous treaties, conventions, declarations, resolutions, guidelines,
and recommendations.
Governmental obligations
with regard to human rights fall under the broad principles of respect,
protect, and fulfil.6 In practical terms, international human
rights law is about defining what governments can do to us, cannot do to
us and should do for us. In the context of TB, this is relevant because
it can bring new criteria to assessing the effectiveness of existing TB
interventions and programmes in reaching the most vulnerable
populations. Creating widespread awareness about government obligations
can also be a means to mobilize increased resources. It also provides a
framework for governments to document their own progress towards
realizing their commitments.
Individual rights
and public health.
Public health is
sometimes used by States as a ground for limiting the exercise of human
rights. Limitation and derogation clauses in the international human
rights instruments recognize that States at certain times may need to
limit rights. Such clauses are primarily intended to protect the rights
of individuals when States perceive that such limitations must take
place.
These restrictions must
be in accordance with the law, in the interest of legitimate aims
pursued, and strictly necessary for the promotion of the general welfare
in a democratic society. In addition, where several types of limitations
are available, the least restrictive alternative must be adopted. Even
where, on grounds of protecting public health, such limitations are
basically permitted—based on a set of principles called the Siracusa
Principles—they should be of limited duration and subject to review.
The rights of individuals
and groups to active, free and meaningful participation in setting
priorities, making decisions, planning, implementing and evaluating
programmes that may affect their development is an integral component of
a rights-based approach.
Siracusa Principles
1. The restriction is
provided for and carried out in accordance with the law;
2. The restriction is in the interest of a legitimate objective of
general interest;
3. The restriction is strictly necessary in a democratic society to
achieve the objective;
4. There are no less intrusive and restrictive means available to reach
the same goal; and
5. The restriction is not imposed arbitrarily, i.e. in an unreasonable
or otherwise discriminatory manner.
"Progressive"
realization of rights.
In all countries,
resource and other constraints can make it impossible to fulfil all
rights immediately and completely. The principle of progressive
realization provides that States may proceed "progressively"
with attention to "the maximum of its available resources."
Lack of resources cannot be used to justify not implementing human
rights. This applies equally to all countries, rich or poor. The
international community has an obligation to support the fulfilment of
basic human rights and services in resource poor areas.
Governmental
obligations with regard to human rights fall under the broad principles
of respect, protect, and fulfil.7
Governmental
responsibility for the principle of nondiscrimination includes ensuring
equal protection under the law, as well as in relation to such issues as
housing, employment, and medical care.
Respect human rights,
which requires governments to refrain from interfering directly or
indirectly with the enjoyment of human rights.
States have the
obligation to strive to ensure that no government practice,
policy or programme violates human rights, ensuring provision of
services to all population groups on the basis of equality and
freedom from discrimination, paying particular attention to
vulnerable and marginalized groups.
Protect human rights,
which requires governments to take measures that prevent third parties
from interfering with human rights.
States have the
obligation to prevent other actors in the field of health, for
example biomedical research institutions, health insurance
companies, care providers, health management organizations, and
pharmaceutical industry from infringing human rights by supporting
measures which progress towards equal access to health care, health
technologies, goods and services or quality information provided by
third parties.
Fulfil human rights,
which requires States to adopt appropriate legislation, administrative,
budgetary, judicial, promotional and other measures towards the full
realization of human rights.
States have the
obligation to take all appropriate measures—including but not
limited to legislative, administrative, budgetary, and
judicial—towards fulfillment of human rights, including the
obligation to provide some sort of redress that people know about
and can access if they feel that their health-related rights have
been impinged on.
The principle of
nondiscrimination is fundamental to public health and human rights
thinking and practice.
Freedom from
discrimination is a key principle in international human rights law and
has been interpreted, in regard to the right to health, as prohibiting
"any discrimination in access to health care and underlying
determinants of health, as well as to means and entitlements for their
procurement, on the grounds of race, colour, sex, language, religion,
political or other opinion, national or social origin, property, birth,
physical or mental disability, health status (including HIV/AIDS),
sexual orientation, civil, political, social or other status, which has
the intention or effect of nullifying or impairing the equal enjoyment
or exercise of the right to health."8
Like leprosy and HIV, TB
is a highly stigmatized disease. Widely held, and usually mistaken,
beliefs about what causes TB, how it is transmitted, and whether it can
be cured are linked to that stigmatization and to discrimination against
people with TB. Patients may go to great lengths to escape stigma and
discrimination, lengths that may prolong both their own suffering and
the length of time they remain infectious: they may reject a diagnosis
of TB and "shop around" for another, more acceptable one; hide
their diagnosis from employers, family and/or community; or simply avoid
diagnosis entirely.
TB patients may avoid
going to nearby health centres associated with TB diagnosis for fear of
exposure, instead seeking diagnosis and treatment in a different
community. This may afford more privacy, but it also makes travel, and
thus completion of treatment, more difficult. In Pakistan, TB patients
mentioned that they face difficulties in obtaining sick leave, and even
in government service they are at risk of losing their jobs.9
Everyone "shall
have the right to… seek, receive and impart information and ideas of
all kinds…". Article 19 of the Universal Declaration
The provision of and
access to health-related information is considered an "underlying
determinant of health" and an integral part of the realization of
the right to health.
General Comment, No.14
Neglect of the
right to information can have substantial health impacts.
Dissemination of
information is emphasized as a strategy to eliminate health-related
discrimination. The right of women, children and adolescents to such
information is particularly stressed.
No health programme can
be successful if those who could potentially benefit from it lack the
information they need. Misinformation about what causes TB, how it is
transmitted, and whether it can be cured is linked to the stigmatization
of TB and of people with TB. Various cultures associate TB with socially
and morally unacceptable behaviour, witchcraft, and curses. TB is also
widely believed to be inherited, and people who have TB are sometimes
considered unmarriageable. Such beliefs due to misinformation have led
people to be physically isolated, discriminated against, and terminated
from work. For women, the results have been particularly severe:
divorce, desertion, and separation from their children10.
Children can be deprived of their right to education, ostracized by
their peers and sometimes by teachers, due to having a family member
sick with TB.
Lack of practical
information about available treatment for TB is common. In one study in
India, more than half of surveyed households knew that government-run
primary health centres existed, but only 15 per cent knew that free TB
treatment was available there.
Lack of accurate
knowledge and understanding about TB itself is also common.
Individuals’ socioeconomic status has been found to determine their
access to information about TB as well as the treatment available.
Another study in India found that people who are illiterate have the
most misconceptions about TB. Other Indian studies found that many
physicians who treat TB themselves lack knowledge.11 In the
United States of America, a study of homeless adults found that over 60
per cent had misconceptions about TB transmission;12 a study
of drug users found that less than half knew that HIV-related TB could
be treated and 70 per cent thought that a reactive skin test meant they
were infected.13
Education and information
can promote understanding, respect, tolerance, and nondiscrimination in
relation to persons with TB. Public programming explicitly designed to
reduce the stigma attached to HIV/AIDS by challenging beliefs based on
ignorance and prejudice has been shown to help create a more tolerant
and understanding supportive environment.14 Visibility and
openness about HIV/AIDS was shown to be key to successfully mobilizing
government and community resources to respond to the epidemic. An
understanding that TB is curable, not hereditary, and, after a short
period of treatment, no longer contagious, can also help alleviate the
stigma around TB, increase acceptance of people with TB, and create a
supportive environment to encourage diagnosis, continuous treatment, and
effective cure.
Studies have shown that
public health education contributes to the success of TB programmes,
especially when peers and family members are involved. But, while
greater knowledge of the symptoms, treatment available, and health
impact of TB is crucial, addressing the right to information is only one
part of a broader response needed to address the interdependency of
human rights to improve health, reduce vulnerability to TB, and increase
access to treatment for all.
TB
& human rights
"All UN agencies
are parts of a broad alliance for human rights. Based on our mandates we
are pursuing different paths towards that goal. But one observation is
common to all: poverty is the main obstacle."15
Dr Gro Harlem
Brundtland, Director-General, World Health Organization
TB
and poverty
The socioeconomic status
of individuals can affect their access to information about TB as well
as their access to the diagnostic and treatment facilities available. It
can also influence their choice of provider and their ability to meet
the demands of the TB treatment regimen.
Poverty can
increase people’s vulnerability to TB.
Studies have only
recently been undertaken to identify the socioeconomic burden of
illnesses such as TB, but the linkage between TB and poverty has long
been noted. Increased probability of becoming infected with TB and of
developing active TB are both associated with malnutrition, crowding,
poor air circulation, and poor sanitation—all factors associated with
poverty.16 In developed countries, there was a significant
decline in tuberculosis between the mid-19th and mid-20th
centuries, before the advent of drug treatment. This was largely brought
about by factors that reduced transmission—improved working conditions
and less overcrowding for example. Because effective drug treatment for
TB was introduced in developed countries at a time when the incidence of
tuberculosis was already rapidly declining, this may have led to an over
appreciation of the role of chemotherapy in the decline and an
underestimation of the impact of changing socioeconomic conditions. As
one researcher observed, "without [Robert] Koch’s discovery [of
the TB bacillus in 1882], the socioeconomic character of tuberculosis
would have been clearer, and a demand for redistribution of the wealth
of the community would have become a much more important issue."17
A series of studies in
India18 have strongly correlated income with TB. In one
district, those who earned less than US$ 7 per month had twice the
prevalence of those earning more than US$ 20 per month. In urban areas,
prevalence among those with no schooling was four times that of tertiary
graduates. In the developed world as well, people living in poverty
experience conditions that are more conducive to TB, have little access
to health care, which delays diagnosis, and if they get treatment it is
more likely to be inconsistent or partial. 19
Not only does
poverty predispose one to TB, but also TB can increase poverty.
"Human rights
principles and norms are relevant when choosing which data are collected
to determine the type and extent of health problems affecting a
population … decisions on how data are collected (e.g. disaggregated
by age, sex) also have a direct influence on the policies and programmes
that are put into place."20
The socioeconomic burden
of TB is particularly acute as it has its greatest impact on adults in
their most economically active years. Three quarters of the new cases of
TB each year are among men and women between the ages of 15 and 54. The
results of the India studies reflect averages throughout the developing
world: three to four months of work time, the equivalent to 20–30 per
cent of annual household income, are typically lost to TB. The cost is
higher if patients have delayed seeking treatment and remain ill longer.
Incurred debt, combined with lost income, may trigger sale of assets
such as land or livestock, pushing the family deeper into poverty. If
budgets become tight enough, both adults and children may begin to feel
the effects of malnutrition, which can have a permanent impact on a
child’s health. Children may be removed from school because there is
no money for uniforms or fees or because they must begin work to help
support the family. In the India study, one fifth of schoolchildren
discontinued their studies.
International laws make
governments and intergovernmental organizations publicly accountable for
their actions in planning and implementing public health policies and
programmes. It makes them responsible for creating environments that
facilitate or prevent the further spread of TB as well as for their
actions towards people who have TB.
Everyone has the right to
a standard of living adequate for health and well-being, including food,
clothing, housing, medical care and necessary social services and the
right to security in the event of sickness. (Article 25 Universal
Declaration of Human Rights, 1948)
TB
and children
There has been a
perception, particularly in the industrialized world, that TB is a
disease of the old. Fifty years ago, however, hospital services for
children in the North dedicated entire wards for infants and children
with TB. When TB was common in those countries during the 19th century,
young people were heavily affected. In developing countries, and in some
of the most vulnerable communities in the developed world, young
children have high TB rates. In developing countries where a large
proportion of the population is under the age of 15 years, as many as 40
per cent of tuberculosis notifications may be children; tuberculosis may
be responsible for 10 per cent or more of childhood hospital admissions,
and 10 per cent or more of hospital deaths. Furthermore, with an annual
risk of infection of 2–3 per cent, close to 40 per cent of the
population may be infected by age 15 years.21 Like adults,
children with HIV are more vulnerable to TB. In Lusaka, Zambia, 37 per
cent of children admitted to hospital with TB in 1990 were HIV-positive.
This had increased to 56 per cent in 1991 and 68.9 per cent by 1992.22
TB is difficult to
diagnose in children because it is hard to confirm the diagnosis by
culture even where laboratory facilities are good. The presence of HIV
makes the task even more difficult, resulting in some children being
misdiagnosed as having TB and given treatment, while others with TB may
be falsely negative and not receive treatment.
The current international
TB control strategy focuses on active pulmonary TB—the source of most
TB infection in children—but does not address children and adolescents
as vulnerable sub-groups. Furthermore, vaccination of infants with BCG
is no longer believed to prevent active TB in adulthood, although it can
protect children from the disseminated forms of the disease, for
example, tuberculosis meningitis.23
Children are exposed to
TB primarily through contact with infectious adults—with special risk
in high TB-HIV settings—and will continue to be at risk for TB as long
as those adults remain untreated. Curing TB and preventing its spread in
the wider community is thus one important strategy to reducing
children’s vulnerability to TB.
No vaccine yet exists
that is truly effective against pulmonary disease. BCG vaccine (Bacillus
Camille Guerin) was invented in 1921. It is useful in preventing certain
types of TB, namely miliary and meningeal tuberculosis occurring in the
first year of life, but is not effective in preventing the development
of pulmonary TB in adulthood.
Children are also
vulnerable to the direct and indirect impacts of other family members
having TB. Already marginal households that lose income or incur debt
due to TB will experience even greater poverty as budgets are cut and
assets sold. If their primary care giver is ill or is preoccupied with
caring for other ill family members, the child’s care and education
may be neglected. If the principal family provider is ill and cannot
work, children risk malnutrition, which increases susceptibility to TB
and brings with it lifelong deleterious effects on both health and
education. Children are especially vulnerable if their mother becomes
sick and dies. There is a strong correlation between maternal survival
and child survival to age 10. One study in Bangladesh revealed that
whereas a father’s death increased child mortality rates by 6 per 100 000
for both boys and girls, a mother’s death was associated with
increases of 50 per 100 000 in sons and 144 per 100 000 in
daughters.24
Children in households
with TB may also be taken out of school or sent to work. Both scenarios
deprive them of their right to education and put them in situations that
may expose them to more prolonged contact with persons with active TB.
In rural Uganda, for example, 32 patients were interviewed about the
economic costs of TB. Five of their children had had to be withdrawn
from school because fees could not be paid.25 Even if not
removed from school, children from poor or marginalized communities
where poor nutrition and ill-health prevail have a below-average school
enrolment and attendance rate and, as a result, lower-than-average
educational attainment. Lack of education correlated negatively with
access to health services, and the neglect of the right to education on
children’s current and future health can be profound.
Children are entitled to
the enjoyment of the highest attainable standard of health and to
facilities for the treatment of illness and rehabilitation of health.
Nearly every country in the world has ratified the Convention on the
Rights of the Child which obligates States to take appropriate measures
to diminish infant and child mortality; to combat disease and
malnutrition; and ensure the provision of necessary medical assistance
and health care to all children with emphasis on the development of
primary health care. (Article 24 Universal Declaration of Human Rights,
1948)
TB
and women
In 1998, about
three-quarters of a million women died of TB and over three million
contracted the disease. Worldwide, TB is the greatest single infectious
cause of death in young women. While fewer women than men are diagnosed
with TB, a greater percentage of women die of it—and the stigma
attached to having TB falls far more heavily on women.
Discrimination on the
basis of sex was endorsed in the Universal Declaration of Human Rights
in 1948 and permeates all international and regional human rights
instruments. In 1979, a specific instrument addressing the broad
spectrum of women’s issues was adopted. The Convention on the
Elimination of All Forms of Discrimination Against Women (CEDAW) notes,
in its preamble, that "in situations of poverty, women have the
least access to food, health, education, training and opportunities for
employment and other needs." Ratifiers of this convention agree
that they will "take all appropriate measures to eliminate
discrimination against women in the field of health care" in order
to ensure that men and women have equal access to health services.
The stigma associated
with TB may be greater for women than men and the consequences can
include ostracism, abandonment by the husband and/or his family, divorce
or the husband’s taking of a second wife, and consequent loss of
social and economic support, lodging, access to one’s children, etc.
Marriage chances may be affected if women are known to have TB, or even
if they have a family member with TB, since the stigma associated with
the disease may affect all household members. Women with TB have
particular difficulty finding a marriage partner, and some families go
to great lengths to deny or hide an unmarried daughter’s illness.
In-depth interviews with TB patients in Bombay indicated that married
women were concerned about rejection by husbands and harassment by
in-laws and unmarried women worried about their reduced chances of
marriage and being dismissed from work.
The concerns for women
generally relate to discrimination and other issues that could, ideally,
be redressed. Health volunteers with the Bangladesh Rural Advance
Committee (BRAC), a nongovernmental organization involved in community
TB care, for example, report that the level of stigma around TB has
reduced considerably because TB is now understood to be curable and
free, and good quality treatment is available in the villages. Indeed,
the growth of community care programmes for people with TB and/or HIV
indicates that stigmatization is not universal and can be overcome.26
A vital area where
information is lacking concerns the relationship between TB and
pregnancy.
The available literature
on the subject, much of it dating from the pre-chemotherapy era, is
"confusing and controversial." Yet up to 70 per cent of deaths
due to TB occur during the childbearing years. The lack of data on
diagnosis of TB in pregnant women, on the effects of TB on the health of
the mother, foetus and infant, on the complications of treatment, on
barriers to treatment, etc. means that there are no guidelines available
for health professionals on the diagnosis and management of TB in
pregnancy.27 Commonly held beliefs among women, such as that
pregnancy increases intolerance of TB drugs or makes them ineffective,
have been linked to women interrupting their TB treatment when they
became pregnant.28 Women are entitled to appropriate services
in connection with pregnancy, granting free services where necessary,
according to the Women’s Convention (CEDAW).
Gender discrimination,
even when not directly related to health care—for example denying
girls and women access to education, information, and various forms of
economic, social and political participation—can create increased
health risk. Even if the best public health services are available, a
woman has to be able to decide when and how she is going to access them,
and that implies that she has to have the ability to control and make
decisions about her life.
While in treatment, for
example, women may be dependent on men for successful compliance. In
Bangladesh, for example, as in some other cultures, women must be
accompanied by a male relative when they go to a health facility. The
men consult with the provider outside the women’s presence, and women
may be dependent on the men for their supply of TB drugs.29
Cultural barriers such as these can deprive women of their rights to
information and participation, freedom of movement, privacy and
individual autonomy, and impair their right to health.
TB,
migrants, and refugees
Migration is a social
phenomenon caused by a constellation of factors, including poverty,
conflict and war, policies of structural adjustment and globalization
and, in Europe, an increasingly ageing workforce. It predominantly
affects developing countries where two-thirds of migration flows occur.
Health risks are
increased because of migrants’ vulnerability due to lack of full
enjoyment of human rights, including access to housing, education and
food because, at their destination, however affluent it may be in
general, many migrants are likely to move into social and economic
conditions characterized by overcrowded, substandard housing, poor
sanitation, and lack of access to medical services. Discrimination in
the host country as regards access to information, health services, and
health insurance creates a precarious environment exacerbated by social
dysfunction (lack of social control and disruption of social norms).
Even when health services are available and affordable, language
difficulties, unfamiliarity with the new country’s customs and
culture, and fear of immigration authorities can be significant barriers
to getting needed care. In addition, migrants can face discrimination
linked with racism and xenophobia. To reduce the vulnerability of
migrants, and thus the risk and impact of ill-health, their health and
human rights protection in national health policies and legislation
needs to be enhanced.
Access to TB
treatment is particularly difficult for seasonal migrant workers.
The transient nature of
their work and the long duration of TB treatment make it difficult for
seasonal migrant workers to balance their economic needs with their
health needs. Some states in the United States of America have set up
effective voluntary screening programmes for farm workers in the fields.
Virginia, for example, made a considerable effort to obtain reliable
follow-up information (travel itineraries, winter addresses, relatives
addresses) for those who started preventive or treatment therapy
following screening.30
There is little
information on TB in migrants moving from one developing country to
another, although considerable attention has been paid to TB in migrants
moving from developing to developed countries. TB case-loads in a number
of developed countries have increased due to migration. In 2000, almost
one quarter of the people with TB in east London arrived in the United
Kingdom in the previous year.31 Thirty-one to 47 per cent of
migrant farm workers tested on the east and west coasts of the United
States of America were TB positive, and those groups were six times more
likely to develop TB than the general population of employed workers.32
Refugees and internally
displaced persons being resettled share many of these problems, although
in camp situations they may have some advantages in the form of health
care assistance from the United Nations and international relief
organizations. However, because of the refugees’ immediate needs for
shelter, food and water, the need for TB control is often
underestimated—for example, TB caused 25 per cent of all adults deaths
in refugee camps in Somalia. Authorities undertaking displacement of
persons shall ensure, to the greatest practicable extent, that proper
accommodation is provided to the displaced persons and that such
displacements are effected in satisfactory conditions of safety,
nutrition, health, and hygiene. (Guiding Principles of Displacement)
Since 1950, refugees are
protected under a specific treaty, the Convention Relating to the Status
of Refugees. In the case of migrant workers, a specific instrument and
the International Convention on the Protection of the Rights of All
Migrant Workers and Members of Their Families has been developed, which
has not yet entered into force. Such instruments are important tools and
enhance protection of these vulnerable groups against discriminating
treatment or simply inadvertant neglect. The high incidence of TB among
immigrants and migrant workers has given rise in many developed
countries to calls for stricter, more effective screening of new
arrivals and better treatment and follow-up of positive cases. Screening
new arrivals may not be strictly necessary, effective or cost efficient.
In the United Kingdom, for example, the number of cases of active TB
thus detected is low and there is little evidence that port of arrival
screening has been effective in detecting TB.33 Further
evidence shows that despite the levels of TB among migrants in developed
countries, it does not necessarily affect the risk of TB in the general
population, nor warrant mandatory screening. Both Britain and the
Netherlands, for instance, reported that in the late 1990s immigration
had not substantially affected the annual risk of TB infection.
Similarly, in New South Wales, Australia, despite very high rates among
the immigrant population, the rate of infectious TB has remained low at
1.4 per 100 000.34
States are under the
obligation to respect the right to health by refraining from denying or
limiting equal access for all persons, including asylum seekers and
undocumented immigrants, to preventive and curative health services.35
TB
and prisons
States are obliged to
provide minimum levels of health care, accommodation and diet for every
prisoner. These principles are clearly laid out in the United Nations
Standard Minimum Rules for the Treatment of Prisoners and in other
instruments stating the rules governing the treatment of prisoners.36
TB is transmitted by the
airborne spread of infectious droplets, usually when an infectious
person coughs. Crowding and poor ventilation favour its transmission.
People in institutions cannot choose to walk away from these conditions
in order to protect themselves from TB. Whether the setting is prisons,
detention centres for asylum seekers, penal colonies, prisoner of war
camps, or secure hospitals, institutionalization greatly increases
vulnerability to TB.
The institutional
system with the greatest impact on TB is the world’s prison system.
Though no judge would
condemn a wrongdoer to "infection with tuberculosis," that has
become the sentence for many prisoners. It has been argued that
"because tuberculosis is easily diagnosed, treatable, and curable
but may lead to death if neglected, contracting tuberculosis and not
getting treatment because of poor prison conditions may be considered to
be a violation of human rights."37
While these minimum level
goals should be pursued by every State, it is clear from the burgeoning
of TB, multidrug-resistant TB (MDR-TB), and HIV within the world’s
prison systems that it will take considerably more political will to
ensure care for prisoners’ health and, by extension, that of the
prisoners’ home communities.
On any given day, there
are an estimated 8 to 10 million people incarcerated worldwide38
and their numbers are increasing. The prevalence of TB in prisons is
higher, sometimes considerably higher, than in the general population.
Mortality rates for TB among prisoners are high. For every person in
prison on any given day, four to six more will pass through the system
that year. Released prisoners, as well as prison staff and visitors can,
in a sense, bring the prison home.
As with data on other
subpopulations that are particularly vulnerable to TB, collection and
analysis of prison data should be disaggregated so that discrimination
can be detected and action taken.
In the U.S. State of
Texas, for example, an inmate was found to have had undiagnosed TB for
several months. Screening revealed that 106 of his fellow inmates and 11
jail employees were infected with M. tuberculosis. Alarmed, jail
authorities contacted 3 000 released inmates who might have been
infected over those several months. Only 50 appeared for screening, of
whom 12 had positive skin tests; 2 950 remain somewhere in the
community and are likely unaware that they may be infected with TB.39
Prisoners are
predominantly male (90–95 per cent worldwide), young (15–44 years
old), from socioeconomically disadvantaged populations, and belong to
minority groups. Independent of these pre-existing vulnerability
factors, prisons conditions themselves foster transmission of TB and
increase the likelihood of an inmate developing active TB. Prisons
worldwide are characterized by overcrowding and poor ventilation,
hygiene and nutrition. All these factors directly contribute to TB
transmission and may promote reactivation of latent infection and
progression to disease. Prisons are also a locus of HIV infection, a
significant risk factor for acquiring and developing TB.
Pre-trial detention
centres are often of worse quality than the prisons proper, and may pose
special problems for TB transmission. In addition, individuals detained
in such centres can be among the most mobile within the prison system,
transferring often from holding centre to court room to jail or back
into the community.
Control of TB inside
prisons is critical for control of TB in the general population, but
designing effective policies and programmes requires information. It is
important that data on TB in prisons be reported in a transparent way
that will allow it to be separated out from data on cases within the
general community. Though countries are encouraged to report on TB in
prisons, data from ministries in charge of prisons, usually the Ministry
of Justice, are rarely incorporated into health statistics. It is feared
that this results in "underestimates of the severity of the problem
of tuberculosis both in prisons and in the general community."40
Both the prison
population and the general community have the right to protection from
TB generated in prisons and other institutions. Yet "recognition of
tuberculosis as a specific health problem in prisons does not
necessarily lead to action."41 Prisoners are not cured,
remain infectious, and may develop drug resistance. Prisons have become
"both amplifiers and propagators of a problem created within the
larger community"—MDR-TB.42
Prison health services
may be reluctant to begin treatment for a chronic illness for inmates
they feel may be released soon, e.g. pre-trial prisoners or those
nearing the end of their sentences. Prisons also do not provide a
particularly supportive environment for prisoners who do begin treatment
to complete it, and many may stop as soon as their symptoms abate. Some
prisoners may also avoid diagnosis because they are afraid their release
may be held up until they complete treatment. (Paradoxically, some
prison inmates may try to get on TB programmes even if they do not have
the disease, or may deliberately expose themselves to infection, because
of the perceived—and in some cases quite real—benefits of better
care in the hospital.)
An effective national TB
programme must include prisons and institutions if it is to provide
universal access to effective TB diagnosis and treatment. In 1997 in
Baku, Azerbaijan, at a meeting on TB control in prisons, participants
called on States to exercise the political will to take the necessary
steps without which "tuberculosis will increase death among
prisoners and their families, and the prison staff and the
community." 43
Holding a prisoner beyond
his or her release date in order to complete TB treatment, or refusing
treatment because the person may not be in prison long enough to
complete it, need to be considered in light of the Siracusa Principles.
Certainly, in both cases, a "less intrusive and restrictive means
to reach the same goal" is available—the orderly integration of
released prisoners into a TB programme in the public health system. In
the absence of such an alternative, "public health and prison
health officials face many dilemmas in delivering services that risk
challenging, or even impinging on, the rights of prisoners. The poorer
the country and the fewer the resources allocated to prison health, the
more extreme may be those dilemmas."44 No matter how
limited the country’s resources, however, prisoners have the right to
health care that meets community standards and is equivalent to what is
available to the general population.
TB
and substance abuse
Substance abuse is a
significant risk factor for acquiring TB infection and progressing to
active TB. Abuse of drugs and alcohol are often cofactors alongside
poverty, unemployment, homelessness, and a lack of access to social
services. Injecting drug use is also a primary risk factor for HIV
transmission, and HIV increases the risk of getting sick with TB.
In Odessa, Russia,
testing in 1995 revealed that nearly three-quarters of that city’s
injecting drug use population was HIV-positive, and in the former Soviet
Union, the great majority of injectors are young people who share
needles.45 Because drug use, in particular, is almost
universally criminalized, users frequently end up in prison—with its
added risk factors for TB transmission.
In a study in Atlanta,
Georgia, of 151 TB patients at a public hospital, 44 per cent reported
having been incarcerated within the five years prior to their TB
diagnosis. Risk factors for previous incarceration included being male,
African American, aged under 45 years and having identified substance
abuse problems with alcohol, intravenous drugs or crack cocaine.
Substance abuse was identified as a problem by 71 per cent of all the
patients in the study.
In addition to the links
between drug abuse and other factors that increase vulnerability to TB
such as poverty, poor nutrition, homelessness, and infection with HIV,
drug use sites such as shooting galleries and crack houses can foster
the spread of TB.
Because drug using
populations are both marginalized and criminalized, their trust and
cooperation may be particularly difficult to gain. Innovative and
expanded TB outreach and services, especially those that respect
individual rights and dignity, are necessary to reach these populations.
Public health authorities working to control the crack house outbreak in
California, for example, used a mobile health van to facilitate access
to testing and treatment, bringing services directly to the affected
neighbourhood.
Another instance of
substance use that contributes to increased vulnerability to TB is
tobacco use. Smoking is associated with almost every population
worldwide and is rapidly expanding. A recent study in China indicates
that of all deaths in that country that can be attributed to tobacco,
between 5 per cent and 8 per cent of those deaths were due to TB. Among
Chinese men, 11.3 per cent of the deaths from TB can be attributed to
smoking; and men in urban China who smoked more than 20 cigarettes a day
had double the death rate from TB of non-smokers.46 Tobacco
consumption is steadily increasing in low-income countries, fueled by
population growth, the self-perpetuating nature of smoking prevalence,
and the lowering of social taboos against women smoking. It is also
fueled by a lack of awareness among the general population of the health
risks of smoking and intensive marketing campaigns by the tobacco
industry directed at women and young people.47 Populations
exposed to tobacco industry advertising have a right to information on
the health risks of smoking and to public health messages countering
denials by the tobacco industry of those health risks. Where
vulnerability to TB is already high due to a lack of basic human needs
such as adequate nutrition, housing, and clean water, the expense and
health risks associated with tobacco consumption can only further lower
living standards, degrade health, and increase vulnerability to TB.
Stigmatized and
criminalized, people who abuse substances are pushed to the margins of
most societies. This does not, however, obviate their right to equal and
non-discriminatory access to TB information and treatment services, as
well as to social services that would address the underlying conditions
that increase their vulnerability to TB.
TB
and HIV: dual epidemic, double discrimination
HIV may be the most
potent risk factor for TB yet identified. The two infections have a
symbiotic relationship: HIV infection is fueling the TB epidemic and TB
is escalating the HIV mortality rates. People infected with HIV have a
50 per cent risk of developing active TB, though the risk for
HIV-negative people is only 5–10 per cent. TB is the most common cause
of death in persons with HIV infection throughout the world.
Clearly, any effort
to control TB must take HIV into account.
Conditions that enhance
vulnerability to TB—poverty, homelessness, substance abuse,
psychological stress, poor nutritional status, crowded living
conditions—also enhance vulnerability to HIV. Both epidemics register
their highest rates of infection among populations that are typically
disadvantaged or marginalized in their own societies.
HIV has received far more
human rights focus than has TB. HIV has been recognized and addressed
specifically in numerous rights-related documents throughout the world.
The HIV/AIDS pandemic was a catalyst for beginning to define some of the
structural connections between health and human rights. The first WHO
global response to AIDS in 1987 called for human rights for people
living with HIV/AIDS. This was the first time human rights were
explicitly named in a public health strategy.
Throughout the course of
the HIV/AIDS pandemic it has been shown "that public health efforts
to prevent and control the spread of HIV/AIDS are more likely to succeed
in public health terms if policies and programmes promote and protect
human rights."48
The dual epidemic
of HIV and TB raises issues of individual choice and confidentiality.
In many countries,
preserving confidentiality about one’s HIV or TB status is difficult.
Merely visiting a TB- or HIV-associated clinic can arouse community
suspicion and begin a cycle of stigmatization. This can act as a
deterrent to diagnosis. Individuals have a right to privacy that
protects them against both mandatory testing and disclosure of their
health status. They also have a right to education and information about
TB, HIV, and the synergy between the two infections so that they can
make informed choices about testing and treatment options.
Informed, voluntary
testing of TB patients for HIV is being encouraged by a community-based
initiative implemented at several district-level sites in Africa called
ProTEST. ProTEST attempts to reach some of the 90 per cent of people
with HIV who do not know they are HIV-positive, and provide them with
access to preventive treatment for TB if they have not yet developed it.
ProTEST’s goal is to create an environment in which more people will
choose to be tested for HIV. This is being done, in part, by taking a
rights-based approach that emphasizes counselling and education. The
name reflects the dual aims of promoting voluntary testing and
mobilizing communities to protest for better TB and HIV care. It is
hoped that when patients understand that if they know they are
HIV-positive they will have access to a full range of HIV care and
treatment services—including TB screening, prevention, and
treatment—this new knowledge will counterbalance the stigma associated
with HIV.
Conclusion
Recognizing TB as a
social, economic, and political disease, and not just a medical problem,
prompts the need to explore new avenues through which efforts to ensure
TB prevention and access to TB cure can be strengthened.
Human rights span civil,
political, economic, social, and cultural dimensions of life. This calls
for a cross-sectoral approach in which increased synergy among the
various sectors relevant to health and development should be promoted
and fragmented interventions avoided.
Human rights puts
the individual at the centre of any health policy, programme or
legislation.
Active, free, and
meaningful participation of individuals is a key component of a
rights-based approach. Attention must be paid to involving the most
vulnerable and marginalized sectors of society in setting priorities,
making decisions, planning, implementing, and evaluating programmes that
may affect their development.
Hand-in-hand with
participation are a range of key rights integral to applying human
rights to public health. The rights to information and freedom from
discrimination are such examples. Dissemination of information, paying
attention to specific vulnerable population groups, is an important
strategy to eliminate health-related discrimination.
Human rights as a
tool for analysis.
Human rights has
implications for data collection, recognizing that human rights
principles and norms are relevant when choosing which data are collected
to determine the type and extent of health problems affecting a
population. Decisions on how data are collected (e.g. disaggregated by
age, sex) also have a direct influence on the policies and programmes
that are put into place. Collection and analysis of data on
subpopulations that are particularly vulnerable to TB should be
disaggregated so that discrimination can be detected and action taken.
Public health workers can
use human rights instruments to support complex analysis of the
multidimensional public health challenges we face in society today.
Human rights can help identify key societal determinants of health that
affect the vulnerability of specific population groups. Human rights can
then be used to reduce vulnerability by modifying laws, policies,
regulations, or practices to be consistent with human rights, for
example, by ensuring freedom from discrimination in all spheres of
society for vulnerable populations.
Human rights are also an
important standard of assessment of governmental performance in the area
of health. For example, nearly every country in the world, by ratifying
the Convention on the Rights of the Child, has pledged to ensure that
children are entitled to the enjoyment of the highest attainable
standard of health and to facilities for the treatment of illness and
rehabilitation of health. This obligates states to take appropriate
measures to diminish infant and child mortality; to combat disease and
malnutrition; and ensure the provision of necessary medical assistance
and health care to all children with emphasis on the development of
primary health care. (Article 24) Raising awareness of these obligations
can mobilize action and support from various sectors of society and
enhance governmental accountability.
Attention to human rights
also brings a focus on less "popular" vulnerable groups that
tend to be forgotten. Prisoners are such an example, and human rights
reminds us that prisoners have rights like everyone else, including
rights to health care, adequate accommodation, and nutrition. People who
abuse substances belong to another marginalized group that is often
stigmatized and criminalized. They have human rights to equal and
nondiscriminatory access to TB information and treatment services, as
well as to social services that would address the underlying conditions
that increase their vulnerability to TB.
Until recently, public
health and human rights were considered as almost antagonistic sets of
principles and practices.49 Public health was understood to
promote the collective health of society even if individual freedoms
were curtailed, such as through quarantine and excessive
institutionalization.
In the 1980s, those with
a focus on reproductive health, and later on HIV/AIDS, started to
recognize public health and human rights perspectives as mutually
reinforcing and synergistic. A new understanding emerged that
acknowledged that a lack of respect for human rights can affect
people’s vulnerability to disease and ill-health.
Health systems and
health care delivery are increasingly taking human rights norms and
standards into account. This is reflected in a new focus on questions
such as: Is there equality of access? Are privacy and confidentiality
maintained? Do the providers practice nondiscrimination? Is there
sufficient attention to vulnerable groups? Experience has demonstrated
that when health systems take these and other human rights issues into
account, patients and public health are both far better served.
Today there is an
increasing recognition that public health and human rights are
complementary and mutually reinforcing approaches to human well-being
and development. The potential of human rights to contribute to
advancing global health objectives, such as TB treatment and cure has,
however, only recently begun to be explored. It is hoped that this
document will heighten interest in exploring human rights as a
potentially useful avenue for public health workers to tackle the
challenges posed by one of the world’s biggest killers.
As Archbishop Desmond
Tutu highlighted the link between TB and human rights in a keynote
address: "The majority of tuberculosis patients throughout the
world do not have the basic medical care that they need and deserve.
Why? Because it is not free and they have no money to buy it, because it
is not available in their community, because there is an unreliable
supply of medication or a lack of health care workers to monitor their
treatment, or because such strong social stigma is attached to
tuberculosis in their community that they feel they should hide their
illness.
Tuberculosis has long
been linked with social stigma and discrimination. We can change this by
recognizing TB as a curable disease just like any other.
Every person with
tuberculosis has the right to be treated for his or her disease. No one
can deny that. So let us stop denying them this basic human right."50
The Committee on
Economic, Social and Cultural Rights recently adopted a general comment
on the right to health, which is intended to clarifying the nature and
scope of this complex right. A key guiding principle put forward—which
may help ensure that all individuals can access treatment—was
"availability," meaning that functioning public health and
health care facilities, goods, services, and programmes have to be
available in sufficient quantity within the State party. Essential
drugs, as defined by WHO’s Action Programme on Essential Drugs, is
explicitly mentioned herein which means that the governmental obligation
to fulfil the right to health must include efforts to ensure that
essential drugs are made available to all population groups.
Endnotes
1. Kunda Dixit,
Director, Panos Institute, South Asia. Speech at 1999 tb.net
Conference on "TB and Human Rights", Kathmandu
2. HSD Working Paper:
Health and Human Rights. Geneva, WHO, 2000 (unpublished document;
available on request from Sustainable Development and Healthy
Environments, Department of Health in Sustainable Development—SDE/HSD—,
World Health Organization, 1211 Geneva 27, Switzerland), p. 3, 13
3. Ibid., p. 9
4. The steps to be
taken by the States Parties to achieve the full realization of this
right include: c. The prevention, treatment and control of
epidemic, endemic, occupational and other diseases.
5. HSD Working Paper:
Health and Human Rights. Geneva, WHO, 2000 (unpublished document), op.
cit., Annex 2
6. In turn, the
obligation to fulfil contains obligations to facilitate, provide and
promote (footnote 33 of General Comment on the right to the highest
attainable standard of health)
7. HSD Working Paper:
Health and Human Rights. Op. cit., p. 5
8. General comment on
the right to health adopted by the Committee on Economic, Social and
Cultural Rights on 11 May 2000 paragraph 18
9. Hurtig AK, Porter
JDH, Ogden JA. Tuberculosis control and directly observed therapy from
the public health/human rights perspective. International Journal of
Tuberculosis and Lung Disease, 1999, 3(7):553–560
10. Rangan W, Uplekar
M. "Socio-cultural dimensions in tuberculosis control" in
Porter JDH and Grange JM, eds. Tuberculosis: An Interdisciplinary
Perspective. London, Imperial College Press, 1999, p. 265–281
11. Pathania V, Almeida
J, Kochi A. TB Patients and Private For-Profit Health Care Providers
in India. Geneva, World Health Organization, The Global TB Programme,
1997. (Unpublished document WHO/TB/ 97.223) (These problems are not at
all unique to India, but that country has been the site of most of the
few comprehensive studies on TB patients’ health seeking behaviour.)
12. Peterson Tulsky J,
Castle White M, Young JA, et al. "Street talk: knowledge and
attitudes about tuberculosis and tuberculosis control among homeless
adults." International Journal of Tuberculosis and Lung Disease,
1999, 3(6):528–533
13. Salomon N, Perlman
DC, Friedmann P, et al. "Knowledge of tuberculosis among drug
users. Relationship to return rates for tuberculosis screening at a
syringe exchange." Journal of Substance Abuse and Treatment,
1999, 16(3):229–235
14. HIV/AIDS and Human
Rights: International Guidelines. Second International Consultation on
HIV/AIDS and Human Rights. Geneva, 23–25 September 1996. New York
and Geneva, United Nations, 1998, HR/PUB/98/1, p. 27
15. Fiftieth
Anniversary of the Universal Declaration of Human Rights, Paris,
France, 8 December 1998
16. Kamolratanakul P,
Sawert H, Kongsin S, et al. "Economic impact of tuberculosis at
the household level." International Journal of Tuberculosis and
Lung Disease, 1999, 3(7):596–602
17. Waaler, HT.
Tuberculosis and socio-economic development. International Journal of
Tuberculosis and Lung Disease, 1982, 57:202–205
18. Pathania V, et al.
Op. cit.
19. Grange JM. The
Global Burden of Tuberculosis. In Porter JDH and Grange JM, eds, op.
cit., p. 13
20. Ibid., p. 7
21. Donald PR. Children
and tuberculosis: protecting the next generation? (Tuberculosis
Progress Report). The Lancet Interactive. 20 March 1999
22. Grange JM. The
global burden of tuberculosis. In Porter JDH and Grange JM, op. cit.,
p. 16
23. http://www.who.int/vaccines-diseases/history/history.htm
24. Hudelson P. Gender
issues in the detection and treatment of tuberculosis. In Porter JCH
and Grange JM, eds., op. cit., p. 349
25. Croft RA and Croft
RP. Expenditure and loss of income incurred by tuberculosis patients
before reaching effective treatment in Bangladesh. International
Journal of Tuberculosis and Lung Disease, 1998, 2(3):252–254
26. Blinkhoff P,
Bukanga E, Syamalevwe B, et al. Under the mupundu tree: Volunteers in
home care for people living with HIV/AIDS and TB in Zambia’s
copperbelt. Strategies for Hope, Series No. 14. ACTIONAID, Oxford,
1999
27. Grange J,
Ustianowski A, Zumla A. Tuberculosis and pregnancy. In Diwan VK,
Thorson A, Winkvist A, eds. Gender and Tuberculosis: An international
Research Workshop. Goteborg, Sweden, Nordic School
of Public Health, 1998
28. Liefooghe R. Gender
differences in beliefs and attitudes towards tuberculosis and their
impact on tuberculosis control: What do we know? In Diwan VK, Thorson
A, Winkvist A, eds. Gender and Tuberculosis: An international Research
Workshop. Goteborg, Sweden, Nordic School of Public Health, 1998
29. Ibid.
30. "Epidemiologic
Notes and Reports Tuberculosis among Migrant Farm
Workers–Virginia." MMWR. 35(29):467–469, July 25,1986
31. Bothamley GH.
"Failure to register with a general practice compounds the
problem." Letters BMJ, 321:569 (2 September 2000)
32. "Tuberculosis
among migrant farm workers in northeastern Colorado." Juanita
Synder
(http://www.bernardino.colostate.edu/HICAHS/Research/Tuberculosis.htm)
33. Surinder Bakhshi.
"Screening is of doubtful value." Letters. BMJ, 321:569
(September 2, 2000)
34. Heath TC, Roberts
C, Winks M, Capon AG. "The epidemiology of tuberculosis in New
South Wales 1975–1995: the effects of immigration in a low
prevalence population." International Journal of Tuberculosis and
Lung Disease, 1998, 2(8):647–654
35. See General Comment
on the Right to Health
36. These include the
United Nations Body of Principles for the Protection of All Prisoners
under Any Form of Detention or Imprisonment; United Nations Basic
Principles for the Treatment of Prisoners; Council of Europe
Recommendation Concerning the Ethical and Organisational Aspects of
Health Care in Prison; and the United Nations Rules for Protection of
Juveniles Deprived of their Liberty, 1990 [see:
www.unhchr.ch/html/intlinst.htm]
37. Levy M, Reyes H,
Coninx R. Overwhelming consumption in prisons: Human rights and
tuberculosis control. Health and Human Rights, 1999, 4(1):166–191
38. Levy M, et al., op.
cit., p. 168
39. Wallace CE, Tyree
A, Cruise P. Texas targets prisoners’ TB. The TB Treatment Observer.
Published by the Communicable Diseases Cluster, World Health
Organization, Geneva. No. 8, 15 May 1999, p. 11
40. Levy M, et al., op.
cit., p. 172
41. Maher D, Grzemska
M, Coninx R, et al. Guidelines for the Control of Tuberculosis in
Prisons WHO/TB/ 98.250. Geneva, World Health Organization, 1998, p. 25
42. Levy M, et al., op.
cit., p. 177
43. The Baku
Declaration. See Maher D, et al., 1998. Op. cit., p. 73
44. Levy M, op. cit.,
p. 178
45. Garrett L. Betrayal
of Trust: The Collapse of Global Public Health. New York: Hyperion,
2000, p. 212
46. Bo-Qi Liu, Peto R,
Sheng-Ming Chen, et al. "Emerging tobacco hazard in China: 1.
Retrospective proportional mortality study of one million
deaths." BMJ, 1998, 317:1411–1422
47. Dagli E. "Are
low income countries targets of the tobacco industry?"
International Journal of Tuberculosis and Lung Disease, 1998,
3(2):113–118
48. Gruskin, S. and D.
Tarantola, HIV/AIDS, Health and Human Rights, chapter 29. In: Handbook
on HIV/AIDS. Family Health International (in press)
49. Tarantola D.
"Building on the synergy between health and human rights:A global
perspective." (unpublished paper) 14 August 2000
50. Inaugural address
by His Grace Archbishop Desmond Tutu, 30th World Conference on Lung
Health, Madrid, Spain, 15 September 1999
Annex
Additional contact
information
Health and Human
Rights in Health in Sustainable Development
World Health Organization
20, avenue Appia
CH—1211 Geneva 27
Tel: +41 22 791 2523—Fax: +41 22 791 4726—http://www.who.int
The Stop TB
Partnership Secretariat—A partnership hosted by WHO—http://www.stoptb.org
Office of the UN High
Commissioner for Human Rights (UNOG)
8-14, avenue de la Paix
CH—1211 Geneva 10
Tel: +41 22 917 9000—Fax: +41 22 917 9016—http://www.unhchr.ch
(includes list of international human rights instruments)
Amnesty International
(see list of country contacts in website)—http://www.amnesty.org
Human Rights Watch
350 Fifth Avenue, 34th Fl.
New York, NY 100118-3299 USA
Email: hrwnyc@hrw.org—http://www.hrw.org
Francois-Xavier
Bagnoud Center for Health and Human Rights (FXB Center)
Harvard School of Public Health
651 Huntington Ave., Boston MA 02115, USA
Tel: +1 617 432 0656—Fax: +1617-432-4310—Email: fxbcenter@igc.apc.org—http://www.hsph.harvard.edu
Human Rights Internet
8 York Street, Suite 302
Ottawa, Ontario
K1N 5S6 Canada
Tel: +1 613 789 7407—Fax: +1 613 789 7414—http://www.hri.ca
(includes list of other Human Rights NGOs)