Juridical
Action
for
the
Protection
of
Collective
Rights
and
Its
Legal
Impact:
A
Case
Study
Enrique
Gonzilez
Mac
Dowell
he development in
1996
of a new generation
of
antiretroviral drugs was a major pharmaceutical ad-
T
vancement in the struggle against the epidemics of
HIV
and AIDS. However, due to high costs, access to these
new drugs was almost impossible for most people living
with
HIV
or
AIDS.
This situatiowhas been even more dra-
matic for those living with HIV/AIDS in poorer countries.
Many of the organizations that are fighting for the rights of
those with HIV have since developed human rights advocacy
and legal strategies
to
try
to achieve universal access to treat-
ment. These organizations are also fighting for states’
compliance with human rights obligations under health-re-
lated treatises and conventions. This paper draws upon the
experience gained in Latin America, focusing on the legal
strategies that have been explored in Venezuela and the legal
consequences for domestic law.
Following intense networking
through
citizen campaigns,
several states of the region now recognize, either through
judicial or administrative decisions, the right of access to
antiretroviral drug treatment. Sice
1997,
a number of
umpmo
actions have been introduced before the courts
in
Venezuela.
The
arnpuro
institution, which is common to most Latin
American countries, is a constitutional action for the protec-
tion
of
human rights. It is a writ petition, presented before a
jurisdictional court, through which the petitioner claims for
the quick restitution of a violated right or for the prevention
of an imminent threat to a constitutional right or guarantee.
The main purpose
of
this article
is
to describe how
advocacy and use of the law have expanded access to
antiretroviral drug treatment and health benefits for people
with
HIV
in Venezuela. In recent times, those with HIV/
AIDS and nongovernmental organizations have organized
]ournu1
ofhw,
Medicine
&Ethics,
30
(2002):
644-654.
0
2002
by the American Society of
Law
Medicine
&
Ethics.
themselves all over the country to promote social support
and further legal actions to ensure that the court mandates
are implemented. Thanks to the lobbying and monitoring
efforts carried out by the nongovernmental organizations
involved, most authorities are nowadays complying with
the judicial mandates and have designed specific pro-
grams for their implementation. This process, which
took place under two different constitutional orders,
has also required that the law undergo its own evolution.
Furthermore, the jurisprudence resulting from these ac-
tions and the new constitutional dispositions have brought
about relevant legal benefits for the protection of collec-
tive social rights.
Indeed, the related case law has been providential not
only for the recognition of health-related rights, but also for
the progressive implementation of access to treatment pro-
grams. The
case
law
stands
as
a groundbreaking landmark
in
national jurisprudence,
as
it may lead to a significant expan-
sion
of
umpuro
constitutional actions. One of the major
achievements in this sense has been the implicit recognition
of collective and diffuse interests. This means that in all
petitions
that
are related to a situation that affects
an
identi-
fiable group of people (collective interests) or a
nondeterminable group of people (diffuse interests), judges
must consider extending the effects of the decision to all
people concerned. The implications for the legal advocacy
of collective rights
-
the right
to
health among them
-
are
profound.
Collective and diffuse interests found their way to con-
stitutional recognition following
a
National Assembly
drafting
process that led to a new Constitution
in
1999.
The jurispru-
dence under the new Constitution
-
which includes a
progressive human rights charter, including the
right
to health
-has confirmed and further developed states’ obligations
regarding access to treatment.
644
The
Journal
of
Law,
Medicine &Ethics
AMPARoA~oNsANDCQ~ANDDIFNSEINIERESTS
The
amparo
constitucionul
is typical of most Latin Ameri-
can legal frameworks, although its scope and proceedings
vary from country to country. In general terms, it is the most
effective and relevant constitutional action for the protection
of human rights. It is a writ petition, presented before a
jurisdictional court, that allows for the quick and effective
restitution of a violated constitutional right or for the pre-
vention of
an
imminent violation of a constitutional right or
guarantee.
Its
procedure is somewhat similar to the U.S. right
of injunction
(both
mandatory and prohibitory), but the
claim
has to show evidence of a violation, or threat of violation, of
a constitutional right or guarantee.’
If
the
amparo
is filed against a state agent or agency, it is
a human rights action; under Venezuelan law, it can also be
introduced against private actors.
Ampam
actions have preva-
lence over any other legal action before the courts and have
to be decided upon with urgency.
Even though it stands
as
the better legal remedy for ad-
ministrative acts related to human rights, the
ampam
has
traditionally been limited by national courts in
two
ways.
First, these decisions could not generate new rights or estab-
lish public duties related to constitutional rights that were
not directly related to the prevention or restitution of a re-
ported
threat or violation. Second,
case
law
had
been
emphatic
through the years that the effects of the decision must be
restricted to the petitioners, even
if
neither the law of
ampam
nor the 1961 Constitution2 demanded any such restriction.
The following are fragments of relevant case law issued by
the Supreme Court of Justice in the past 15 years: “theampam
action
is
a personal action that demands a legitimate and
direct interest on the petiti~ner”;~ “there is no doubt that
nowadays the
amparo
action is a subjective action, and
thus its effects are always inter
par tie^";^
“to accept the
possibility that through an
amparo
action, one or several
individuals arrogate themselves the generic representation
of
the whole citizenship would be to debilitate the funda-
mental mission or objective of the
amparo,
which is the
restitution to a given person
of
a juridical situation recog-
nized in the Constitution.”s
As
the following case study will show, the actions and
subsequent decisions related to the demands for a right of
access to treatment have played a major role in the progres-
sive abandonment of these restrictive interpretations of
amparo
actions and in their replacement by a broader and
more flexible doctrine.
collective
and
diffuse
interests
in
Latin
Amtxican
law
This
paper also focuses on the progressive recognition of the
justiciability of collective and diffuse interests by Venezuelan
courts through constitutional actions involving access to
treat-
ment. Collective interests are those that are understood
as
affecting a given group of people that may not
be
quantified
but
can
be identified (in a given time and space)
as
belonging
to a specific sector of the population. Examples would be a
given collectivity living in a certain area, or the set of people
that are registered under a certain association. Diffuse inter-
ests, on the other hand, are those that affect the community
as
a whole without the possibility
of
identifying a given
a
piori
nexus among them. Examples would be the interests
affected by
a
specific public policy or by a certain activity
that causes environmental damage?
Both actions are similar to class actions in the United
States and the related concept of “fluid recovery,” which al-
lows the courts to rule on the interests of a generic group of
people affected by a given situation. However, they have yet
to be
as
effective and codified
as
the resources of
Anglo-
American law are.’
The
ampuro
action has been an effective tool in the pro-
tection
of
particular collective rights once their legal status
has been recognized by the courts or the law. Several Latin
American constitutions have incorporated them
as
legitimate
dimensions to constitutional actions (among them, Brazil,
Colombia, Bolivia, and, most recently, Venezuela).
ACCESS
TO
TREATMENT
AS
A
HUMAN
RIGHT
When people living with
HIV
in Latin America started de-
manding access to the new antiretroviral treatments, both
through the social security and social welfare systems, they
found themselves before a state that argued that it was not
possible to provide adequate antiretroviral drug treatments
due to their high costs. This situation created a new human
rights challenge, which was to establish a clear legal link
between access to treatment and fundamental human rights
law.
All
over the region, the social movement related to the
struggle against
AIDS
set out to join
this
fight, with increas-
ingly positive results.s
In July 1996, a court in the State of
Siio
Paul0 (Brazil)
recognized for the first time in
Lati
America the right of
access to last generation antiretroviral treatment for a peti-
tioner. The decision established the state’s obligation
of
regular and timely delivery of the treatment prescribed by
the petitioner’s doctor.
In
that same year, a decree was passed
establishing the complementary duty of the state’s public
health office to administer the most effective treatments
against AIDS-related
disease^.^
In the next few years, similar
court decisions that were directly linked to citizen actions
followed in several countries.
In
Colombia (where the
amparo
is
known
as
Accion
de
Tutela),
several claims allowed for recognition of a right of
access to treatment, even before the new antiretroviral treat-
ments were developed;1° in due time, a decree was passed
which established a right
to
integral health care and treat-
ment for
those
with
HIV/AIDS.”
In Costa
Ria,
the Supreme Court established the right
of access to treatment as part of the state’s duty to offer
645
Volume
30:4,
Winter
2002
medical care, which stems from the principles
of
social jus-
tice and solidarity.I2 In Mexico, an
umpuro
action allows for
the development of positive national jurispn~dence.’~ In
Ar-
gentina,
a
law had been passed as early
as
1990
(Law
23.798)
which established the struggle against AIDS as a matter of
national interest; it included the measures needed to guaran-
tee diagnosis, treatment, prevention, health care, and
rehabilitation of HIV/AIDS and related pathologies. How-
ever, three years
of
legal actions were needed to guarantee
access
to
the new generation
of
antiretroviral treatments, as
the Ministry of Health appealed every new decision. The
final decision came in
1999.14
In
Panama, despite several actions that failed
to
achieve a
positive judicial decision, other
actions
in
1999
before the social
security agency led
to
an administrative decision that estab-
lished the right of access to treatment for affiliated workers.”
Through a pioneering administrative decision, Uruguay
was one of the
first
countries
in
the world to guarantee universal
access to
last
generation treatment.
A
Presidential Decree is-
sued in
1997
established the duty, both for public and private
health institutions,
to
provide these drugs to people in need.
At
the regional level, and following a petition
of
those
living with
HIV/AIDS,
the Inter-American Commission on
Human Rights (IACHR) in
1999
issued precautionary mea-
sures, calling upon the government
of
El Salvador
to
temporarily guarantee access to treatment to those with
HIV/
AIDS,
as
well
as
health care and nutrition measures,
in
order
to
preserve their lives.I6 Following
this
proceeding before the
IACHR, the Supreme Court of El Salvador recognized ac-
cess to treatment as a human right.
In most of these countries, actual compliance with the
mandates is facing several administrative and financial prob-
lems, but in any case the legal battle has been fought
-
and
in many cases won.
Also,
the decision of the IACHR stands
as a significant accomplishment,
as
it related the right
to
life
to an adequate standard of health within a system that is
reluctant to act in cases
of
social rights.
The
right
to
health
in
the
1961
and
1999
Constitutions
The political, social, and economic crisis that Venezuela en-
dured the past two decades led
to
the progressive collapse of
the republic.
This
crisis included the consensus of the emerging
political forces to change the Constitution, which had been
passed in
1961
and had since then been the democratic char-
ter
of
the nation.
In
1999,
elections were called for a National
Assembly, with the objective
of
drafting a new Constitution.
The newly drafted Constitution was approved by the vast
majority
of
the voters through a referendum and was finally
passed on December
31,1999.
It
is based on the progressive
development of a social justice democracy,
as
opposed
to
the
more liberal
1961
Constitution. The previous constitutional
order conceived
of
social rights
as
programmatic aspirations
as opposed to the extensive guarantees included under the
new charter.
The
1961
Constitution, under Article
76,
conceived
of
the right to health
as
the right to the protection of health; it
established the state’s duty of taking care
of
public health
and providing preventive services and health care to people
without economic resources (see Figure
1).
Although the
government adopted positive measures for the development
of
a progressive social security system during the
1970s,
the
economic and political crisis of the
1980s
and
1990s,
and
their effect on social policies
of
structural adjustment pro-
grams, led to the dismantling
of
the public protection
structures.
As
for the judiciary, the Supreme Court of Justice
was rather reluctant to further develop the contents of social
rights, including the right to health.
On the other hand, the
1999
Constitution, which has an
extensive human rights charter, considers health a funda-
mental social right and an obligation of the state, “[to] fulfill
it
as
part of the right
to
life.” The contents of the right
to
health under the new Constitution include the obligation
to
promote and implement public policies in order
to
improve
life conditions and collective welfare,
as
well
as
to
guarantee
access to public health services (see Figure
1).
Thus, the
protection
of
health
is
just
one
of
the many elements
of
the state’s obligations, which include duties related to the
development
of
a state-run public health system as a com-
ponent of the social security system (Article
83).
As
for
the judiciary, the new Supreme Tribunal
of
Justice has had
few occasions
to
further develop the state’s obligations un-
der Article
83,
but has established jurisprudence related
to
the provision
of
integral and antiretroviral treatment for people
living with HIV/AIDS.
Most of the constitutional actions described in this pa-
per were introduced under the
1961
Constitution. Even if
the enshrinement of a right
to
health in Article
76
was not
extensive, the link between domestic law and international
human rights law allowed for progressive jurisprudence
-
both in right-to-health-related cases, as well as in other hu-
man rights cases.]’
As
for the structure and functions of the public health
system, services are provided by different national, regional,
and
local
governmental entities.
At
a national level, the
so-
cial security system and the public health system are the
main service providers. Only
30
percent of the Venezuelan
workforce
is
affiliated with the social security system, which
means the burden on the public health system is overwhelm-
ing.
Actually,
the system has been on the verge
of
total
collapse
for the past decade, although under the new administration
steps have been taken to recover it.
As
for the health services
of
the social security system, its quality was quiet reasonable
as
compared to other countries in the region, but the eco-
nomic crisis that followed had dramatic effects on all its
components.
646
TheJournal
of
Law, Medicine &Ethics
Constitution of
the Republic
of
Venezuela,
January
16,1961
Article
76.
All persons have a right to the protection of health. The authorities shall see to the maintenance of public
health and shall provide the means of prevention and care for those who lack them. All persons are obliged to submit to
health measures established by law, within the limits imposed by respect for the human person.
Constitution
of
the
Bolivarian
Republic
of
Venezuela,
December
31,1999
Article 83.
Health is a fundamental social right and the responsibility of the
State,
which shall guarantee it as part of the
right to life. The State shall promote and develop policies oriented toward improving the quality of life, common welfare
and access to services. All persons have the right to protection of health, as well as the duty to participate actively in the
furtherance and protection
of
the same, and to comply with such health and hygiene measures
as
may be established by
law, and in accordance with international conventions and treaties signed and ratified by the Republic.
Article
84.
In order to guarantee the right to health, the State creates, exercises guidance over and administers a national
public health system that crosses sector boundaries, and is decentralized and participatory in nature, integrated with the
social security system and governed by the principles of gratuity, universality, completeness, fairness, social integration
and solidarity. The public health system gives priority to promoting health and preventing disease, guaranteeing prompt
treatment and quality rehabilitation. Public health assets and services
are
the property
of
the State and shall not be
privatized. The organized community has the right and duty to participate in the making
of
decisions concerning policy
planning, implementation and control at public health institutions.
Article
85. Financing of the public health system is the responsibility of the State, which shall integrate the revenue
resources, mandatory Social Security contributions and any other sources of financing provided for by law. The State
guarantees a health budget such as to make possible the attainment of health policy objectives.
In
coordination with
universities and research centers, a national professional and technical training policy and a national industry to produce
health care supplies shall be promoted and developed. The State shall regulate both public and private health care
institutions.
The
HIV
epidemic: general situation
The
first reported HN cases came in the late
1980s.
Today’s
estimates of the impact of the epidemic on the population
vary according to the source. To date, the public health care
system only monitors actual AIDS cases.
In
1999,
the num-
ber
of
registered AIDS cases amounted to
7,448,
whereas
UNAlDS figures point
to
the existence
of
62,000
HIV/AIDS
cases
by the end
of
that year
and
a
70
percent
margin
of
error.lB
In
any
case,
the social conditions
of
vulnerable groups (around
70
percent
of
Venezuela’s
23
million people live in poverty),
the lack of efficient preventive programs, and
the
prevailing
sexist and hedonist Spanish Caribbean culture may have an
unpredictable effect
on
the real impact of the epidemic.
Before the advocacy actions described in this paper be-
gan,
programs for those with
HIV/AIDS
provided by the
social security system were extremely deficient, and thera-
pies were provided in an irregular manner. Additionally,
protease inhibitors, medical tests, and treatment for oppor-
tunistic infections were not included in the
AIDS
program.
The public health system administered by the Ministry of
Health comprised deficient assistance programs and hospi-
tal
services, without any treatment therapies, medical tests,
or treatment for opportunistic infections (with the exception
of
tuberculosis).
As
for the health system
of
the Ministry of
Defense (which is described because one
of
the legal actions
was related
to
HIV-positive draft soldiers), there were ser-
vices and provision
of
transcriptase inhibitors for officers,
but draft soldiers
only
received routine medical attention.19
Social
responses
to
the epidemics
Social responses
to
HIV/AIDS did not start until the early
1990s.
At first, these were geared to providing those with
HIV/AIDS
with
general support and private legal assistance
and helping them struggle against workplace discrimination.
Gradually, some nongovernmental organizations started
to
take notice
of
the human rights dimension to the epidemic,
and through better networking and capacity-building and
increasing international experience and awareness, they
started developing strategies aimed at achieving state com-
pliance with human rights law in relation
to
rights for those
with HN/AIDS.
As
for strategies related to access
to
treatment, in
1994,
ACCSI (Acci6n Cuidadana Contra el SIDA, an AIDS
and
human rights nongovernmental organization20) established
an HIV/AIDS Drug Bank
(Bunco
de
Medicamentot?’)
with
the support
ofkcion
Ecumenica
(a nongovernmental orga-
nization that runs a low-cost health-care center in a popular
647
Volume
30:4,
Winter
2002
section of Caracas). The experience, which was carried out
thanks to an air link with a U.S.-based nongovernmental
organization, allowed a considerable number
of
those with
HIV/AIDS
to
access adequate treatment and
to
network in
the
less
favored areas
of
the city
With the arrival
of
the new antiretroviral treatments,
increased resources were needed to guarantee the correct
functioning
of
the
Drug
Bank.
ACCSI decided
to
focus its
legal strategies on having access to treatment recognized
as
a
human
right. The process, designed and implemented in
coordination with a national network of those with
HIV/
AIDS (the Red Venezolana de Gente Positiva, or RVG+),
included increased grassroots networking, sensitization and
media activities, intense lobbying
of
the public offices in-
volved, and successful use of
amparo
actions. The strategy
has been very successful in the past few years, both in the
social security and social welfare systems, and at the na-
tional as well as regional levels.
As
will be seen, it has led
to
an expansion of the contents
of
the right to health and other
related rights and guarantees under domestic law.
Access
to
treatment case law: the first decisions
Antonio A.
v.
Social Insurance Agency
In
1997,
ACCSI
filed the first
ampato
against the Instituto
Venezolano de Seguros Sociales (the Social Insurance Agency,
or
IVSS)
before
a
national administrative law court, repre-
senting
37
patients, all
of
whom were insured under the
NSS.22
The group filed suit against the
IVSS
because regular
access to prescribed HIVlAIDS drugs was being denied.
ACCSI also demanded the provision of last generation
antiretroviral drugs for these patients. The action was based
on imminent threat
to
the rights to life and
to
an
adequate
standard of health, violation of the right to social security,
and violation
of
the right to benefit from the advancements
of
science and technology, all
of
which were duly recognized
in
the national constitution and the international human rights
treaties ratified by the republic.23
The court decided in favor
of
the petitioners, ordering
the
IVSS
to provide regular administration of antiretroviral
drugs, holding that the absence of these drugs threatened the
right
to
life, and thus stood
as
an imminent violation of both
the right to life and the right to an adequate standard of
health and as a violation of the right to social security, which
has to be fulfilled by the
IVSS.
The court also established
that the authorities had to provide last generation antiretroviral
drugs in fulfillment
of
the right to benefit from the advance-
ments
of
science and technology. This case was the first to
establish a right
of
access to treatment in Venezuela, and was
to be the basis for further actions.
It
also challenged the
traditional doctrine, which did not consider it possible to
establish new rights, or the contents and obligations therein,
through
amparo
mandates.
In January
1998,
the
IVSS
appealed the decision. How-
ever, five more
amparos
were filed against the
IVSS
in the
subsequent months. Intense networking strategies were de-
veloped
to
organize
NSS
members living with
HIVlAIDS,
including the creation
of
a
Comiri
de Amparados (commit-
tee
of
benefited petitioners) within the
IVSS,
capacity-burlding
workshops, and extralegal lobbying and campaigning by the
committee, ACCSI, and RVG+. In August
1998,
after these
sustained efforts, the authorities of the
NSS
issued an ad-
ministrative decision that established access
to
treatment as
a benefit of all insured members living with
HN24
Draft
soldiers
v.
Ministry of Defense
Another relevant case was the
amparo
against the Ministry
of
Defense, introduced by ACCSI on behalf
of
four members
of the army, for violation of the rights to honor, reputation,
and private life; violation of the rights to health and to ben-
efit from the advancements
of
science and technology; and
imminent violation of the right to life. The petitioners ar-
gued that, after having been diagnosed as HIV-positive, they
were dismissed from the army and subject to public deri-
sion, due to publication
of
their health condition. They also
alleged discrimination because, as draft soldiers, they were
not entitled
to
health care and prescription drugs, although
army officials were.
The Supreme Court
of
Justice analyzed the right to health
as
related to the right to life, and concluded that “the right to
(physical and mental) health implies a right to the protection
of health
(.
.
.
and thus
. .
.)
imposes upon the State the duty
to
care
for
public health, mainly through the adoption
of
mea-
sures
to
prevent the spread of the disease.”
As
for those living
with
HIV/AIDS,
and in recognition of human dignity, “the
State has the duty
to
assist the patient in the physical, psychi-
cal, economic and social aspects [of the disease].” Taking
into consideration that humans have developed solutions
to
epidemics throughout
history,
the court observed that “the re-
sponse~OeAIDSepidanicsdoesnotstandassom~gutopian,
not to be accomplished, but
as
a real and active hope before the
potentialities
of
human nature.” Thus,
“it
is now and here that
the right to health emerges with
all
its intensity, not
as
a palliative
to the better passing away, but
as
a demand for life.”2s
This
decision represents further progress in national case
law,
as
it established ample criteria for the identification
of
duties both specific
to
the petitioners and for all army mem-
bers.
It ordered the
Ministry
of Defense to:
(1)
issue resolutions
to preserve confidentiality regarding health and
HIV
status
within the army;
(2)
issue sensitization guidelines regarding
the disease and the ethical behavior
of
army members;
(3)
provide adequate treatment to all HIV-positive army mem-
bers, according to the right to benefit from the advancements
of
science and technology; and
(4)
ask
the Congress
for
finan-
cial resources
to
implement adequate preventive measures,
as well
as
to provide antiretroviral treatment.
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