The AIDS Pandemic
is a remarkable insightful perspective on our response and failure to
respond to the greatest moral challenge of the 20th century. In a world
where ethicists are becoming an endangered species and where political
decisions are too often made in a moral vacuum, Professor Gostin again
brings great clarity to many of the complex ethical and legal questions
raised by a disease that has already taken more than ten million lives
and which could take another forty million lives by the end of this
This book is a brilliant assemblage of and reflection upon thousands of
challenges that ethicists, attorneys, AIDS advocates, healthcare
providers, members of Congress, government and NGO officials, and people with HIV disease
have faced and sometimes avoided since the virus jumped species. This
assemblage in many ways is the literary equivalent of pointillism with
thousands of legal. ethical and public policy issues intricately
counterbalanced to produce a unique luminous effect that allows us to
see both the complex surface of the pandemic and the underlying truths
of our often failed response to the complex challenges of HIV. The
AIDS Pandemic is our La Grande Jatte of AIDS history.
The AIDS Pandemic
is also a
thoughtful review and analysis of the principles of law, ethics, and
human rights that have been challenged by a cunning virus, how these
principles have been applied, violated, and sometimes ignored by our
political leaders, and how the advocates for those affected by the virus
have helped keep these principles in the forefront of our political
consciousness. These principles are reflected in the organization of
this book which is divided into five sections: AIDS in the Courtroom;
Rights and Dignity; Policy. Politics, and Ethics; Special Populations;
and AIDS in the World.
We were fortunate to have the opportunity to interview
Professor Gostin on November 15, 2004
to discuss this remarkable book which in my opinion, is the most
important book ever written on AIDS.
MASJ: Professor Gostin, could you provide some background on your
reasons for writing this The AIDS Pandemic and when you first
began planning the book?
Gostin: I have been working on the HIV pandemic since the
earliest days, here in the United States and globally with the World
Health Organization and UNAIDS. My belief was that we have entered into
a period of stagnation, which I called complacency. We have also failed
to rectify the injustices. Even though we may have made some progress in
the stereotypical attitudes to persons living with HIV/AIDS, other
injustices have only increased. I despair at the disproportionate burden
of the disease placed on the poor and minorities here in the United
States. I despair even more about the gross disparities between the
developed and less developed world. When one recognizes that 95% of HIV
infections are in poorer countries, mostly in Sub Saharan Africa, the
feeling of injustice is profound. This injustice is exacerbated by the
knowledge that most of the therapeutic benefits are going to richer
countries. Most people in the developing world never receive modern
antiviral treatment regimens.
MASJ: How has The American with Disabilities Act affected the rights of people with HIV?
Gostin: At first, the Americans with Disabilities Act (ADA) was
thought to be a major landmark in the fight against discrimination of
persons living with HIV/AIDS. The Supreme Court even held that persons
with asymptomatic HIV infection are “disabled” within the meaning of the
ADA and therefore protected. However, over the last 5 years, the Supreme
Court has systematically narrowed the scope of the ADA. To many of us in
the field of disability law, the Court has simply dismantled the ADA,
and there is a great sadness and pessimism about the future.
MASJ: Please explain how the Rehnquist Court has dismantled the
The American with Disabilities Act.
Gostin: The Supreme Court has dismantled the ADA in multiple
ways. The Court has made it very hard for persons with disabilities to
be protected under the Act. The Court never asks whether a person is
“really black” or really a “woman” in enforcing anti-discrimination
legislation. Yet, it always asks whether the person is “really
disabled.” In fact, most of the time, the Court finds that persons with
disabilities are not even protected by the ADA. Some lower courts have
already started doing this with respect to persons living with HIV/AIDS
who are under treatment. The Court has also narrowly conceived the idea
of employment discrimination. It has been nearly impossible for persons
with disabilities who have been fired from their jobs to gain the
protection of the ADA.
MASJ: Is there legislation similar to The American with
Disabilities Act in other countries?
Yes, there is legislation in many countries such as Australia,
Canada, Germany, the United Kingdom, Israel and Sweden. For readers
interested in understanding disability discrimination law from an
international and comparative perspective, see S.S. Herr, L.O. Gostin,
The Human Rights of Persons with Intellectual Disabilities:
Different But Equal (Oxford
University Press, 2003).
there such a high incidence of litigation against federal and state
prison officials in the early years of the epidemic?
reason is that federal and state prisons were treating persons living
with HIV/AIDS very badly in multiple ways. First, prisoners were kept in
overcrowded and unsafe conditions which helped fuel outbreaks of disease
in the correctional setting. A significant amount of transmission was,
and is, taking place through coerced and/or voluntary sex and needle
sharing. Second, prison authorities were not permitting or facilitating
prevention and harm prevention measures such as condom distribution and
syringe distribution programs. Thirdly, prisoners living with HIV/AIDS
were not gaining access to state-of-the-art treatment. Finally, prison
authorities were using compulsory HIV testing and segregation of HIV
infected inmates. This was not recommended as a public health measure
and was highly stigmatizing and discriminatory. Given all of these
conditions, it was necessary to try to force change through the court
system. This was only partially successful.
some of the more notable recent litigation issues involving HIV in
As mentioned, the
prison litigation has been only partially successful given the more
conservative bent of the judiciary. There are been modest successes in
the areas of screening and treatment, but little progress on condom and
needle distribution. Many other progressive countries such as Canada
have been proactive in it prison prevention programs.
How does the law
currently address the standard of care available to people with HIV in
The Supreme Court
has held that prisoners are entitled to basic health care. However, the
standard is not state-of-the-art health care. Rather, prisoners can sue
successfully only if they can prove they were the subject of gross
neglect, which is very hard to prove.
A more serious
example of White House politics affecting the lives of people with and
at risk for HIV was the last-minute decision by former President Clinton
not to reinstate federal funding for needle exchange, Could you briefly
explain what happened?
prohibits federal funding of clean needle programs except if the
Secretary of Health and Human Services finds that these programs do not
encourage illegal drug use and that these programs actually prevent the
spread of HIV infection. Secretary Shalala in the Clinton Administration
made a finding to this effect. This was going to mean the reintroduction
of federal funding for needle exchanges. However, at the last minute the
Clinton Whitehouse refused to reinstate federal funding. Since leaving
office, President Clinton has said that this was the most serious error
in judgment he made while in office. And he may be correct.
What is the US
current federal policy on needle exchange?
Gostin: As mentioned,
current federal policy is not to fund needle exchanges unless it is in
the form of research. This has had a devastating effect on injection
drug users, their needle sharing partners, their sex partners, and their
offspring. It has been a public health disaster that many other
countries around the world have avoided through humane and effective
Why does the US
still have the irrational policy of exclusion of international travelers
with HIV, and what will be required to reverse this policy?
AIDS community has been boycotting conferences in the United States
since our country adopted the policy of subjecting international
travelers to HIV testing and possible exclusion. We continue to have
this policy because it is politically acceptable and few political
leaders have stepped forward to discontinue it. I am not optimistic
about changes in this policy in the current political atmosphere. The
United States is losing much of its reputation for inclusion and
tolerance, which is sad to see.
Could you comment on
the importance of the AIDS Litigation Project in shaping the legal
framework of US AIDS Policy?
Early in the HIV
epidemic the Assistant Secretary of Health and Human Services asked
Prof. William Curran and I to conduct the Harvard AIDS Litigation
Project. We worked on this project for a decade, tracking HIV court
cases. We found that AIDS was the most litigated disease in United
States history. The AIDS Litigation Project was very influential in
shaping understanding and policy. It showed the political community just
how pervasive discrimination was in America. It showed also how divisive
the epidemic was. Litigation relating to HIV was affecting all our major
institutions ranging from schools, families, and blood suppliers to
constitutional, criminal, and tort law.
between health and human rights is flawed, in part, because of our
neglect of implementing human rights law. What are the factors that have
contributed to this neglect?
Many years ago,
Jonathan Mann and I, together with other colleagues at the Harvard
School of Public Health, wrote an article saying that health and human
rights were intertwined. Health affects human rights; human rights
affects health; and the two areas were highly synergistic. This meant
that we had to find a way to improve human rights if we ever were to
improve the health of persons living with HIV/AIDS and prevent new
infections. I recall visiting Jon Mann when he was first appointed head
of the WHO Global Programme on AIDS. I asked him how he would control
the emerging pandemic and his answer was that he would use traditional
public health tools such as screening and partner notification. When I
saw him a couple of years later, he said that traditional public health
wouldn’t work. Rather, we needed harm reduction such as condom and clean
needle distribution. Then in a couple of years later, he came to the
realization that what was needed was human rights. A woman in Africa or
India, for example, could know what to do about her health and even have
access to condoms. But if she lacked the power to say no to sex by her
husband, she also lacked the power to protect herself from infection. So
began a period of intensive examination of human rights relating to
HIV/AIDS. We have not done a particularly good job in using human rights
law. But there is growing recognition of its importance an I hope to see
increasing understanding and enforcement of human rights law in the
United States and globally.
One of the
highlights of Chapter 4 is your model for a human rights assessment for
public health policies. Would you summarize the steps in this
Mann and I developed the human rights impact assessment as a tool to
measure the appropriateness of AIDS policies. The human rights impact
assessment has several steps:
Step 1: Fact-finding
-- The human rights framework dictates that any public health measure be
informed by evidence and openly debated. Assessments of the human rights
impacts of policy require rigorous and impartial fact-finding from,
inter alia, international organizations, non-profit organizations,
public health or other professional associations, community-based or
advocacy groups, and community leaders.
Step 2: Determine If
the Public Health Purpose is Compelling – Policy makers must have a very strong public health reason
for acting. Serious invasions of human rights, such as the right to
liberty, weigh heavily in a balance of interests. Any careful assessment
of an AIDS policy, then, must begin with the policy maker's objectives.
Step 3: Evaluate How
Effectively the Policy Would Achieve the Public Health Purpose
The existence of a valid and important public health objective does not
in itself justify an AIDS policy. Public officials should have the
burden of showing that the means used are reasonably likely to achieve
the stated purpose. This involves an honest, rigorous scientific
investigation into a policy's potential to meet the expressed goals.
Step 4: Determine
Whether the Public Health Policy is Well-Targeted
-- Once public officials determine that a policy would
effectively protect the public’s health, they should consider how to
implement it. Well-conceived policies target the populations in need.
Ideally, policy makers will narrowly tailor their approaches to those
who will benefit from them, rather than unnecessarily expend resources
and interfere with peoples' lives.
Step 5: Examine Each
Policy for Possible Human Rights Burdens -- Policy makers should balance the effectiveness of a form
of intervention with its impact on human rights. Human rights burdens
may outweigh even a well-targeted policy that is likely to achieve its
public health goal. Identifying all potential infringements on human
rights and evaluating those likely to occur lead to sound government
action. Officials should enact policies that protect individuals' rights
to self-determination, equal treatment, liberty, privacy, family unity,
free expression, free association, and other human rights.
Step 6: Examine Whether
the Policy is the Least Restrictive, Most Cost-Effective Alternative
-- The final step in the human rights impact assessment is whether the
policy is the least restrictive, most cost-effective option available.
This involves comparing a potential policy to other alternatives. Policy
makers may find that an initially desirable program, in fact, is less
effective, more costly, and/or more invasive than other approaches. The
least restrictive alternative does not require public health authorities
to adopt policies that are less likely to protect the population’s
health. Rather, authorities should prefer the least intrusive and least
costly policy that achieves their goals as well as, or better than,
Does the right to
health affect the right to of the medically indigent to access HIV drugs
in state AIDS Drug Assistance Programs?
Yes, the right to health means that people have the right to decent
levels of public health and health care irrespective of their ability to
pay. Thus, poor people have the right to high quality treatment. This is
an ethical imperative.
There have been some
concerns about ethics of HIV testing of the medically indigent who, may
have to rely of state AIDS Drug Assistance Programs for their HIV drugs
if they test positive. Some have argued that our national HIV testing
has an implied offer that if a medically-indigent person tests positive
and needs HIV drugs, that they will be provided. In most states that
implied offer can be affected. However, in states with ADAP waiting
lists, some persons who test positive and need immediate care may be
relegated to a waiting list for several months. There may be some who
may decline to be tested if they could not received treatment if tested
positive. Would not providing this information the person to be tested a
violation of informed consent?
I believe that
testing and screening programs should always be accompanied by high
quality counseling and treatment. If a person is encouraged to be
tested, there is always the potential for stigma and discrimination. In
return, the person should have access to health care. The current ADAP
waiting lists mean that people may be tested, but not have access to
treatment, which is ethically problematic.
Chapter 9. you discuss partner notification, the right to know, and the
duty to warn. You state that there is no way to ethically resolve the
right to privacy and the right to know. Could you explain why this is
such a dilemma?
Persons living with
HIV/AIDS have a clear interest in keeping their health status
confidential. Disclosure of this information without the person’s
consent is a violation of privacy in most circumstances. However, if the
person is engaging in sex or needle sharing with another person, does
that person have “right to know?” Some feminists argue, for example,
that a woman in a relationship has an ethical expectation to know about
her risk. Some even say that health care workers or first responders
have a “right to know.” Much of the answer is that there should be
universal precautions so that individuals do not have to know another
person’s HIV status. Still, there is a dilemma that the courts and
society have been struggling with for many years.
In Chapter 11, you
discuss HIV testing, counseling, and treatment after sexual assault – a
subject that has received little attention prior to you book. What are
the principal obstacles to timely and appropriate post sexual assault
Before the study I did while at Harvard on the question of sexual
assault and HIV, most liberals focused on the rights of the criminal
defendant rather than the rights of the survivor of sexual assault. The
Constitution poses a very hard problem for society. For sex assault
survivors, they want to know the accused’s HIV status as soon as
possible. However, the Constitution tells us that the accused has not
yet been convicted and has rights not to be tested without his or her
consent. Once the accused is convicted, the information is of very
little use to the victim because she would already have seroconverted or
failed to seroconvert. As a result, the hard problem is whether we
should allow testing of the accused at the very earliest stage of the
process. There is also the question of how to get high quality testing,
counseling, and services to the victim at the very earliest stages.
Criminal justice systems have not done a good job providing services for
victims, particularly after sexual assaults.
MASJ: Are the results of
post sexual assault HIV testing used as evidence in legal proceedings?
There are some
complicated rules about this. Some constitutional scholars argue that if
a criminal defendant is tested against his will that the evidence cannot
be used against him. If the sexual assault victim tests negative
directly after the assault and then seroconverts, it may be possible to
use this information against the perpetrator in a criminal or civil law
What rights to
refuse HIV testing has one accused of sexual assault?
Virtually all states permit HIV testing of persons who are accused,
charged, or convicted. The exact requirements vary with each state. In
fact, federal law requires states to have in place compulsory testing as
a condition of receipt of certain federal criminal justice funding
How do you view the
Supreme Court’s perception that government-imposed blood tests are not
I am critical of the
Supreme Court’s jurisprudence in this area. The Court believes that
testing is non-intrusive because it is only a small pin prick. However
this ignores the fact that testing reveals something very sensitive and
important about the person that deserves protection. The Court should be
very reluctant to condone compulsory testing of any kind without a
In Chapter 12, you
discuss the rights and duties of healthcare workers living with HIV/AIDS
One of the most divisive HIV policy issues in the history of the
epidemic in the US was the rights and responsibilities of HIV-infected
healthcare workers. The Kimberly Bergalis cause cèlėbre was on of
the first examples of how the political agenda of the White House had a
direct impact on CDC regulations. Could you recap exactly what happened?
Early in the HIV epidemic a cluster of HIV cases were associated with
the work of a Florida dentist. One of the individuals infected was
Kimberly Bergalis who made an emotional appeal to Congress and the
public. As a result the CDC issued highly restrictive guidelines. These
guidelines did not call for compulsory HIV testing of health care
workers, but essentially made it very hard for them to continue
practicing so called invasive procedures. The courts have also
interpreted the guidelines to exclude many dedicated professionals from
practicing. It has become highly political. This is a shameful policy
because the data show that the risk to patients is exceedingly low. This
is a problem that has been studied and great deal. The best approach is
to have strict infection control standards, not exclude capable and
dedicated professionals from practicing medicine, nursing, and other
health care professions.
What is the US
current national policy of HIV-infected healthcare workers?
In 1991, the CDC recommended that HCWs infected with HIV or HBV (HbeAg
positive) should not perform exposure-prone procedures unless they have
sought counsel from an expert review panel and been advised under what
circumstances, if any, they may continue to perform these procedures.
Even if panels permit them to practice, HCWs must still disclose their
serologic status to patients. The CDC defined an exposure-prone
procedure to include digital palpitation of a needle tip in a body
cavity or the simultaneous presence of the health care worker’s fingers
and a needle or other sharp instrument or object in a poorly visualized
October 1991, Congress enacted a statute requiring each state, as a
condition of receiving Public Health Service funds, to certify that CDC
guidelines “or their equivalent” had been instituted.
December 1995, the Presidential Advisory Council on HIV/AIDS asked
President Clinton to instruct the CDC to review its guidelines that
arbitrarily restrict HIV-infected HCWs and lead to discrimination.
Later, professional organizations recommended a change in policy so that
HCWs are not required to be tested, hospitals are not required to notify
patients, and infected HCWs are not excluded from practice. The CDC,
although it has the legal power to do so, has not changed its policy
about testing and exclusion of HIV-infected HCWs. Despite almost
unanimous consensus among the experts, the agency has not altered its
policy. This may be explained not by science, but politics. The issue of
HIV-infected HCWs is still politically charged and any CDC
recommendations would be subject to intense scrutiny in the White House
You outlined a
proposal for reform of this policy. Would you summarize your five
The following five
recommendations should ensure that patients receive care in a safe
environment, while treating HCWs with respect and dignity:
1.Program to prevent bloodborne pathogen transmission -- Health
care organizations should be responsible for planning, implementing,
enforcing, and evaluating effective strategies for prevention of
bloodborne pathogen transmission.
2. Responsibilities of infected HCWs -- HCWs, as professionals, have
ethical responsibilities to promote their own health and well-being and
to assure patient safety. HCWs should learn their serologic status
through testing with informed consent. Infected HCWs should seek medical
care and treatment, including ongoing monitoring of viral load, as well
as evaluations of physical and mental health status. HCWs are
responsible for notifying patients and hospitals in all cases of
significant exposure to the HCW’s blood.
3. Discontinue expert review panels and special restrictions for
exposure-prone procedures -- Identifying infected physicians,
requiring expert review panels, and adopting special restrictions for
exposure-prone procedures have served to stigmatize HCWs. The term
“exposure prone procedure” has not been clearly defined, so the courts
have erred on the side of restricting HCW practice. Expert review
panels, moreover, are constituted differently in each state so there are
multiple standards of care; even when panels permit practice, health
care organizations sometimes disregard their advice. Review panels,
therefore, should be replaced by expert consultants who would be
available for advising about HCWs’ health and patients’ safety, but not
empowered to restrict HCW practice.
4. Discontinue mandatory disclosure of a HCW’s infection status --
HCWs may feel morally obliged to voluntarily notify patients of their
infection status, but the law should not require disclosure of very low
level risks. HIV, in particular, is a highly personal, and sometimes
stigmatic, health condition that usually has little relevance to patient
safety. Because notification represents an invasion of privacy and may
result in loss of livelihood, it should not be legally mandated.
Impose practice restrictions to avert significant risks to patients
-- Public health authorities owe a public duty to assure patient safety.
Consequently, health care organizations and/or public health authorities
should issue practice restrictions if a HCW:
(a) suffers from a physical or mental impairment that affects his
professional judgment or practice;
(b) has exudative lesions or weeping dermatitis;
(c) has a history of poor infection control technique and practice; or
(d) has had an incident of transmission of a bloodborne pathogen.
these kinds of cases, the HCW cannot practice competently and safely.
Consequently, health care organizations and public health authorities
owe a primary duty to safeguard patient safety.
we see some of the same issues being raised in resource-limited
countries where the pandemic is raging. How has the World Health
Organization responded to the global rights and duties of infected
The policy of the
WHO is not to exclude HIV-infected HCWs, but they have not engaged in a
systematic, effective strategy to protect the rights of HCWs.
In Chapter 13 you
discuss some of the challenges in reducing the perinatal transmission of
HIV and made proposals for reform of US perinatal screening policies.
Would you please summarize them?
The policy goal
should be to reduce vertical transmission to extremely low levels,
ideally under 2 percent of births. There is a growing conviction that
transmission levels can be lowered to near-zero. To ensure that every
woman infected with HIV has a 98 percent chance of delivering an
uninfected child, it is necessary to have high standards of prenatal
screening and treatment. However, pregnant women should not be regarded
purely as reproductive vessels, but as rights-bearing individuals to be
treated with dignity and respect. Consequently, perinatal screening
policy should be reformed by affording women the following rights.
1. Universal prenatal screening. All pregnant women should know
their serologic status as early in gestation as possible. This requires
routine screening as a universal component of prenatal care.
2. Informed decisions. To ensure that pregnant women can make an
informed choice, they should be informed in advance of their right to
refuse an HIV test, the benefits of treatment, and that they will not be
denied care if they decline to be tested.
3. Privacy and non-discrimination safeguards. Because women who
receive routine HIV testing face social risks, they should receive
strong protections for privacy and non-discrimination. In particular,
HIV test results should not be disclosed without the woman’s consent to
the courts, immigration officials, or social workers. Nor should the
information be disclosed without the woman’s consent to her spouse or
partner. Studies have shown that women are often subject to domestic
violence if their HIV status is disclosed to their partners.
4. Post-test care. Prenatal HIV testing is only the first step in
ensuring the health and well-being of women and children. Pregnant women
and their babies also deserve ongoing health care and psychosocial
support. This includes the right to receive state-of-the-art highly
active antiretroviral therapy, viral load monitoring, elective caesarian
section, and referral for support services.
closing comments, you state “The policies for preventing and treating
HIV are clear and effective. What is lacking is the political will and
the financial commitment necessary to safeguard the public’s health in
the United States and globally.” What can each of us do to affect the
political will to do what is right?
I am currently
working with Jack DeGioia, the President of Georgetown University, to
form a global health and AIDS initiative. We believe that students and
faculty at universities across the country have become complacent about
the HIV pandemic. Indeed, one of the central themes of my book is the
problem of complacency. The public and political will simply is not
there. We know what to do, but fail to do it. This is scandalous given
the fact that we are experiencing one of the greatest pandemics in world
history. How can we be so unkind as to neglect this growing global
tragedy? We need leaders—leaders in academia, politics, and society. We
need people with vision who will raise the AIDS pandemic to a level of
commitment needed to give a sense of hope to tens of millions of people
across the globe.
MASJ: Thank you for your insights into
the past and current challenges of the AIDS pandemic and your leadership
respect for human rights with the public health
controlling the continued spread of HIV and the virus's destruction
the economic, political, ethical, and spiritual infrastructures of our
and Unfulfilled Expectations
University of North Carolina Press
Chapel Hill and London - 2003
496 pp., 24 illus. $34.95 cloth
At bookstores or