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Why too many are dying of AIDS at the altar of privacy

Instead of ceding to fears about confidentiality, public health should push for notification programs

From the March 1999 ACP-ASIM Observer, copyright 1999 by the American College of Physicians-American Society of Internal Medicine.

By Cary B. Savitch, FACP

A fine line exists between personal rights and public safety. A small retrovirus, 90 nanometers in size, invisible to the naked eye and even to a high-powered microscope, now straddles that line. In this tug of war, people are walking wounded and dying in large numbers.

America has already lost 400,000 people to AIDS; another 600,000 to 900,000 are HIV-infected and will meet the same fate. Around the globe, 16,000 people become newly infected each day; according to the most recent data from UNAIDS, one woman becomes infected every 12 seconds.

The lack of leadership in controlling the AIDS epidemic is a national disgrace. Fifty-two communicable diseases are reported by name. HIV, the most deadly communicable virus, is off this list in California, Pennsylvania, Massachusetts, Georgia (the backyard of the Centers for Disease Control (CDC), and in a number of other states.

In case anyone is still wondering, the cure rate for AIDS remains locked in at zero. There is no AIDS vaccine, and there may never be one. HIV should be at the top of the list of communicable diseases in all states and partner notification a must, not an issue for debate. Our only hope in saving lives is through prevention, and that opportunity is being squandered.

Behind schedule

The role of public health is to prevent disease and save lives, not to serve as bean counters. We can no longer allow the CDC to sit on the sidelines, a spectator to this epidemic. Testing the political waters before formulating sound public health policy is unacceptable. Confidential name reporting to public health officials is an imperative step in partner notification—something CDC leadership already knows. CDC officials should not be afraid to enforce sound and compassionate public health policies that will save lives. They are already running 15 years behind schedule.

A Brown University study points out that 40% of people infected with HIV do not warn their sexual partners. In the United States, half of women infected had no idea they were at risk. (Eighty percent of those women are black or Hispanic.) Neushan Williams and Darnell McGee gained national attention for each exposing more than 60 women, but what about the people in our communities who infect just one, two or three? Are those acceptable numbers?

Confidential name reporting is conducted for the express purpose of halting disease transmission through contact tracing and partner notification. Some people will be spared infection by being warned of danger. Others can get earlier treatment and counseling. Further transmission can be halted. The relationship developed between public health workers and persons who are HIV-infected must be compassionate and lifelong—and it should start promptly after infection.

The political waters have been too murky for the medical community and our public health officials to navigate. To date, only New York has universal HIV screening of all newborns. Partner notification is in shambles. The failure to practice appropriate prevention against AIDS is the biggest health blunder of our time, one that endangers our own children.

Some have proposed reporting HIV by using a cryptic code or unique identifier, but these proposals are just a ploy to block partner notification programs. Sanction of this dangerous policy by any public health official, legislator or health care provider should chill all of us. No other communicable disease is afforded such political rights.

When a unique identifier is used to report an HIV infection, no information on the person's name, gender, age or race is given to public health officials. Not only does that policy make partner notification impossible, it also produces misleading epidemiologic information: Every time an infected person gets tested, the result is reported to public health officials as a new case.

Imagine a physician treating someone with an HIV infection and being prohibited from notifying the health department of that person's identity so that confidential contact tracing could be done. Now, imagine this "someone" is your daughter's boyfriend.

Public health services have an outstanding record of confidentiality. The time-honored rule of public health is to not disclose persons' names. When contact tracing is done, the source case is never mentioned, whether relating to HIV or any other disease. When the name of someone who is HIV-infected is publicly disclosed, it is invariably by patients, their friends or families.

Absurd logic

Late stage HIV infection—AIDS—is already reported in all 50 states, and with no objection. When an opportunistic infection strikes or an AIDS-related tumor appears, we suddenly classify HIV disease as AIDS. HIV also becomes AIDS when an infected person's CD4 count drops below 200. This is usually eight to 10 years into the disease. These criteria follow the same absurd logic of telling people with lung cancer that they really don't have lung cancer until it riddles their brain or liver. With no other illness are such arbitrary definitions used to report disease.

Persons with CD4 counts of 200 and above also demonstrate active viral replication and are communicable, yet they are ignored by many public health departments. What happens if the CD4 count drops to 180 and then goes back to 230, something that happens all the time? Should these newly reported cases be temporarily unreported, and should their sexual contacts be told not to worry? Can anyone cite another example of such medical nonsense?

Then consider what happens in the real world. When HIV-infected persons go to the pharmacy to pick up their AZT or other antiretrovirals, the pharmacist is aware that these people are HIV-infected. The pharmacist also knows what they look like and records their name, address and telephone number. In all of my years in medical practice, no patient has complained to me about this.

When my HIV-infected patients go to the lab for their HIV viral load tests and CD4 counts, the laboratory technicians certainly know the patient's diagnosis. I have heard no complaints.

County bureaucrats always know the names of HIV-infected persons when AIDS Drug Assistance Program funds and other services are requested. Again, no outcry.

When insurance claims are filed, guess what? Total strangers are clued in. All the while, public health workers are kept out of the loop.

The CDC, our watchdog public institution, must live up to its name. When CDC officials finally muster the courage to rescue our nation's health, they will surely face a harsh battle from some. And, maybe then, people will stop dying at the altar of privacy.

Dr. Savitch, an infectious disease specialist in Ventura, Calif., and assistant clinical professor of medicine at the University of California, Los Angeles, is author of "The Nutcracker is Already Dancing," a book about the medical profession's response to AIDS. Dr. Savitch is also co-founder of Beyond AIDS, an organization dedicated to halting the global spread of AIDS (www.beyondaids.org). He can be contacted via e-mail at stopHIV@aol.com.

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