HIV reporting by name necessary, but confidentiality key

Illinois is joining the majority of states that have established name-based reporting for HIV. How can infectious disease doctors persuade patients to be tested? How can name-based testing be made compatible with patient confidentiality?

Reply:

As an intern at San Francisco General Hospital, which had the first AIDS-specific hospital ward in the United States, I was quickly thrust into the midst of the HIV/AIDS epidemic. It did not take long to realize that my patients were attempting not only to survive an insidious disease but also to prevent disclosure of their status.

While there was no hard evidence that state or federal governments had compromised case confidentiality, the streets were full of stories of people with AIDS who were subjected to losing insurance benefits, fired from their jobs, turned away by health care providers, ostracized by those closest to them, or arrested.

My focus was on the care of my patients. But as a clinical novice witnessing the spread of a disease that seemed to be exploding around him, I bought in to the mindset that the government couldn't be trusted.

Upon returning to Chicago's South Side where I took up my clinical practice, I joined with others in 1998 to orchestrate an impassioned resistance to state efforts to mandate HIV reporting by name. Given this country's history of racial discrimination in public health initiatives (Tuskegee jumps to mind), I could relate as an African-American to my patients' wariness in placing their trust in a government bureaucracy.

In public health graduate school, however, I learned a saying: "Where one stands on an issue depends on where one sits." I am now part of that government that HIV/AIDS patients in San Francisco and Chicago did not believe could preserve their confidentiality. I am now that government bureaucrat declaring that the names of persons with HIV be collected by the state of Illinois effective Jan. 1. Today, as the director of the Illinois Dept. of Public Health, I have become a pragmatic idealist.

I would be disingenuous if I did not say one major change in my thinking had to do with the threat from the Centers for Disease Control and Prevention that Illinois' $75 million in federal HIV/AIDS funds would be in jeopardy if the state did not institute names reporting. I could not let these precious funds for prevention, counseling and testing slip away when the state is dealing with an estimated 30,000 people with HIV.

I would never have agreed to the change without the assurance that the department had strict protocols in place to maintain confidentiality. In fact, our health department collects data on more than 60 infectious diseases and has never had a breach in security. For AIDS reporting, that record extends to 20 years.

In government, unless we have reliable epidemiological data about the prevalence, incidence and future direction of HIV infection, we will not get additional support from our legislatures. Moreover, we will not have the evidence needed to direct scarce resources to address the behaviors that currently increase the risk of HIV transmission or to deal with the disproportionate impact HIV/AIDS has on populations such as minorities and women.

In the medical world it is clear that AIDS names reporting, which is required by all states, does not in itself provide a complete picture of the HIV/AIDS epidemic, since cases are reported and analyzed, on average, a decade after infection. Names and other demographic information about those now testing positive for HIV would present more timely data and an enhanced understanding of HIV prevalence. A 10-year-old snapshot of AIDS is not sufficient.

Most important, whether it is in our role as a government official or as a caregiver, it is critical to have names to stop the spread of disease. The emergence of new treatment regimens that delay the progression to AIDS-related illnesses and death makes it imperative that we bring those at risk of HIV into the public health system as early as possible after exposure. Having a name allows us to follow up to ensure that the individual's case is managed the way cases of other infectious diseases are. They can be linked to medical services and other human services, such as the state's AIDS Drugs Assistance Program, Medicaid, Medicare and disability programs, and their partners can be notified and offered counseling and testing and, if necessary, appropriate medical care.

Physicians must be honest with their patients and disclose that names of HIV-positive individuals will be reported to the state health department (not the CDC). They must know the patient's circumstances and sensitivities when discussing his or her situation. They should understand the pros and cons of names reporting. They should explain that anonymous testing will continue to be available but, once HIV-positive individuals seek care, doctors will be mandated to report their names. This can benefit patients by providing a link to sophisticated advances in knowledge and medical treatment, including state-operated AIDS drug assistance programs. It can significantly reduce mortality and offer great hope for healthier and longer lives. Patients must understand that HIV infection places their partners at risk, and those partners should receive counseling and testing immediately and seek medical care if needed.

The HIV names-reporting controversy brings into sharp focus the difficult balance that must be struck between individual civil rights and protection of the public. The idealist in me hopes that government continues to be a force for good in HIV/AIDS. The pragmatist in me, as in any good clinician, is evidence-based and will await data to see if this decision is the correct one and then act if necessary.

Eric E. Whitaker, MD, MPH, director, Illinois Dept. of Public Health

Reply:

As Illinois moves to join the other 38 states that have established HIV names reporting, several key questions deserve consideration: What value does HIV names reporting add to surveillance? Is there any truth to the fear that names reporting affects people's willingness to get tested?

To try to address the HIV/AIDS pandemic without good surveillance would be like attempting to sail the globe with a broken compass. An accurate description of those who have HIV -- their age, gender, race, risk factors and geographic locale -- provides clear direction and helps determine how and to whom our treatment and prevention efforts should be directed.

But surveillance is only as good as the data that creates it. Counting only AIDS cases has always been problematic for timely surveillance. It takes about 10 years for AIDS to develop after infection, and the introduction of protease inhibitors prolongs by more years the development of AIDS. Adding HIV reporting paints a better picture of more current trends, and names reporting helps to ensure the most accurate count by eliminating double counting or misreporting. However, even adding HIV reporting doesn't complete the picture, as it does not include the estimated 250,000 HIV-positive people who have not yet been tested.

In New York State, home to 15% of the nation's HIV/AIDS cases, names reporting of HIV was introduced in June 2000. At the time, many thought that people would avoid getting tested if they knew their names would be reported to the New York State Dept. of Health. However, this fear has proved unfounded. The state monitored its names-reporting program and state Medicaid data and found no overall declines in testing or results.

Since names reporting was introduced, the Adolescent AIDS Program has provided HIV testing to more than 3,500 youth ages 13 to 24 in the Children's Hospital at Montefiore and in community settings throughout the Bronx. In that time, virtually none of the youth has expressed any concern or declined testing after being informed that names of those with positive results are reported to the Dept. Of Health. Our colleagues at the Montefiore Adult AIDS Program, which also has tested more than 3,500 adults for HIV, reported similar experiences.

Concerns about breached confidentiality and exposure to domestic violence as a result of partner notification are two other arguments against HIV names reporting, but these concerns also have proved unfounded.

It is important to note that the vast majority of people with HIV are already on at least one list -- that of their private health insurer or Medicaid/Medicare. The lists kept at the Dept. of Health have a level of security that far surpasses even our HIPAA-compliant offices. In New York, partner notification was an explicit part of the names-reporting law, with screening for potential domestic violence carried out prior to partner notification. To date, state health officials have found little evidence that disclosure of HIV status was a specific trigger for violence.

In many ways, the issue of HIV names reporting is a sideshow. With the vast majority of states already reporting names for HIV, all states reporting AIDS by name, and funding increasingly dependent on HIV names reporting, it is only a matter of time before the remaining states follow suit. What is really needed is a reinvigoration of the public health and clinical care system to address urgent care and prevention issues. Among them, we need to improve case finding -- the CDC estimates that 25% of those with HIV in the United States have never been tested. If every physician reading this heeded the CDC's recommendation to routinely offer HIV testing in health care settings, I believe we could realize a significant improvement in the way HIV is identified, treated and prevented.

As people are brought into care, they need support and encouragement to care for their own health as well as change sex or drug-using behaviors that can transmit the disease to others. Resources are still needed to meet the current caseload and potential increase if case finding improves.

And finally, AIDS has become the largest epidemic in human history, affecting health, international security and the development of countries throughout the world. As health care professionals, we can support better access to care and prevention for people in nations with far fewer resources than our own.

Donna Futterman, MD, director, Adolescent AIDS Program, Children's Hospital at Montefiore; professor of Clinical Pediatrics, Albert Einstein College of Medicine, New York