Correspondence

Battling HIV on Many Fronts

N Engl J Med 1998; 338:198January 15, 1998

Article

To the Editor:

While we endorse many of Steinbrook's recommendations about battling human immunodeficiency virus (HIV) infection (Sept. 11 issue),1 his call for a “national standard” for reporting such infection may hinder efforts to stop the spread of the virus if it requires reporting the names of people who test positive.

Mandatory name-reporting schemes deter testing, particularly among gay and bisexual men and people of color. The elimination of anonymous HIV testing makes people wait longer to get tested and causes many to decide not to retrieve their test results.

If a national standard for HIV reporting is adopted, it should be a confidential system of alphanumeric codes. Texas and Maryland already conduct HIV surveillance using unique codes, and the experience demonstrates that the reporting of names is not necessary for effective HIV tracking.2

The reporting of names could be especially destructive because legal protections against discrimination are far from secure. In August of last year, the federal court of appeals in Virginia ruled that the Americans with Disabilities Act does not protect people who are HIV-positive but asymptomatic.3 That same month, the federal court of appeals in Tennessee concluded that the Americans with Disabilities Act does not bar discrimination in many forms of employer-sponsored insurance.4

Michael Adams, J.D.
American Civil Liberties Union Foundation, New York, NY 10004-2400

Catherine Hanssens, J.D.
Lambda Legal Defense and Education Fund, New York, NY 10005

Tadd Lazarus, M.D.
New York Medical College, Valhalla, NY 10595

4 References

1. 1

   Steinbrook R. Battling HIV on many fronts. N Engl J Med 1997;337:779-781
   Full Text | Web of Science | Medline

2. 2

   Forbes A. Mandatory name-based HIV reporting: impact and alternatives. AIDS Policy Law 1996;Bonus Report.
   

3. 3

   Runnebaum v. Nationsbank of Maryland, 95 F.3d 1285, 4th Cir., 1997. (en banc.)
   

4. 4

   Parker v. Metropolitan Life Ins. Co., 99 F.3d 181, 6th Cir., 1997. (en banc.)
   

To the Editor:

We are deeply opposed to mandatory reporting of HIV infection. In calling for mandatory reporting, Steinbrook simultaneously advocates greatly expanding access to state-of-the-art medications and to physicians specializing in AIDS care and calls for the implementation of “strong guarantees” against discrimination. While these are laudable goals, they are, unfortunately, unrealistic — the political will does not currently exist to allocate the resources needed for effective provision of services to people with HIV infection, and as history shows, discrimination is not quickly or easily eradicated. In fact, Steinbrook himself acknowledges that “only a fraction” of the people who need drugs have access to them. He must know that his vision is utopian.

New surveillance protocols would permit a better understanding of where the epidemic is heading and where education, counseling, and access to testing are most necessary. However, alternatives to mandatory reporting of names, such as an anonymous unique-identifier system, could provide critical information without compromising patient confidentiality and thus patient care.

Physicians must recognize that the fear of HIV discrimination and the potential subsequent loss of one's home, job, health insurance, and family profoundly affect the patients they see each day. This fear compromises people's health, and mandatory reporting will only heighten their concern. As encouraging new treatment options become available, it is more important than ever that physicians address the AIDS epidemic with approaches that will bring people in for testing and treatment, not those, such as mandatory reporting, that will drive them away.

Michael Horberg, M.D.
Benjamin Schatz, J.D.
Gay and Lesbian Medical Association, San Francisco, CA 94102

Author/Editor Response

Dr. Steinbrook replies:

I recognize the issues raised by Adams and colleagues and Horberg and Schatz. However, I disagree with their conclusions. In my view, concern about breaches of confidentiality and discrimination is an argument for improving measures to ensure confidentiality and prevent discrimination, not a reason to oppose HIV reporting. As Gostin et al. point out, alternative test sites, where anonymous HIV testing is available, are an important complement to a national reporting system.1 Even those who advocate HIV reporting based on unique identifiers, not on the patient's name, acknowledge the problems inherent in this approach.2 These include the cost, the uncertain reliability of the data, the lost opportunities for contact tracing and partner notification, and the difficulty of following up people to make sure they receive needed treatment and services. Despite the disagreements, it is noteworthy that the issue seems no longer to be whether or not HIV infection should be a reportable disease at the federal level, but rather how to proceed.

Robert Steinbrook, M.D.

2 References

1. 1

   Gostin LO, Ward JW, Baker AC. National HIV case reporting for the United States -- a defining moment in the history of the epidemic. N Engl J Med 1997;337:1162-1167
   Full Text | Web of Science | Medline

2. 2

   Creating an effective public health response to the changing epidemic: moving to HIV surveillance by unique identifier and other non-name based surveillance systems. Boston: AIDS Action Committee, October 1997.