Commentary

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 decade.

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?

Gostin: 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, H.H. Koh, The Human Rights of Persons with Intellectual Disabilities: Different But Equal (Oxford University Press, 2003).
 

Gostin: The 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.

MASJ: What are some of the more notable recent litigation issues involving HIV in prisons?

Gostin: 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.

MASJ: How does the law currently address the standard of care available to people with HIV in prisons?

Gostin: 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.

MASJ: 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?

Gostin:  Current law 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.

MASJ: 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 policies.

MASJ: 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?

Gostin: The international 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.

MASJ: Could you comment on the importance of the AIDS Litigation Project in shaping the legal framework of US AIDS Policy?

Gostin: 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.

MASJ:  The relationship 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?

Gostin: 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.

MASJ: 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 assessment?

Gostin: Jon 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, possible alternatives.

MASJ:  Does the right to health affect the right to of the medically indigent to access HIV drugs in state AIDS Drug Assistance Programs?

Gostin: 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.

MASJ: 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?

Gostin:  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.

In 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?

Gostin:  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.

MASJ:  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 interventions?

Gostin; 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?

Gostin: 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 suit.

MASJ: What rights to refuse HIV testing has one accused of sexual assault?

Gostin: 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 programs.

MASJ: How do you view the Supreme Court’s perception that government-imposed blood tests are not unduly intrusive?

Gostin: 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 compelling justification.

MASJ: 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?

Gostin: 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.

MASJ: What is the US current national policy of HIV-infected healthcare workers?

Gostin: 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 anatomic site.

In 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. 

In 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 and Congress.

MASJ: You outlined a proposal for reform of this policy. Would you summarize your five recommendations?

Gostin: 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.

5. 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.

In 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.

MASJ: Unfortunately, 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 healthcare workers?

Gostin;: 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.

MASJ: 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?

Gostin: 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.

MASJ: In your 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?

Gostin: 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.