Sunday, Feb. 21, 1999 The Star COMMENTARY

AIDS reporting rules need to be changed

PUBLIC HEALTH: Centers for Disease Control is not living up to its name.

By Cary Savitch

Before Randy Shilts died of AIDS he left the world a gift. Unwrap his book, "And The Band Played On," and learn from his message: "AIDS didn't just happen to America. Instead, it was allowed to happen by an array of public institutions."

Will the guardians of public safety, the Centers for Disease Control, allow the deadliest public-health blunder of this generation to extend unchallenged into the next century?

To date, we have never waged a legitimate public-health battle against this most deadly virus. Instead, we have engaged in political wars over rights and privacy and sexual freedom -- the AIDS virus a mere spectator.

More than 1 million Americans are already HIV-infected (dead, dying, sick, or about to get sick) and HIV is not even on the list of reportable contagious diseases in many states. Partner notification is in shambles.

I have been treating patients with AIDS since my early medical training at the San Francisco General Hospital. I have prescribed costly and toxic drugs to combat HIV. The improvements on antiretroviral therapy are temporary, and realized only for some. In the end, HIV always kills. My colleagues and I have signed too many death certificates. If the United Nations AIDS statistics are accurate, 50 million people around the globe will have become doomed by next year.

The role of public health is to save lives, not to be bean counters.

The lack of leadership to control 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 CDC's own back yard) and in a number of other states. Public-health officials are conducting opinion polls about how HIV should be reported, when they need to be enforcing sound public health measures--now. They are 15 years behind in their responsibility to protect the public. Stop testing the political waters and start testing for AIDS!

We are reminded that America is already 400,000 people deep (dead) into this epidemic. Six-hundred- thousand to 900,000 additional people are HIV-infected in the United States and they will meet the same fate. Across the map, 16,000 people become newly infected each day--one woman becomes infected every 12 seconds. At what number do our public-health officials become humbled?

Therapy for HIV is limited, and the expectations always exceed benefit. The cure rate locks in at zero. The miracle vaccine has not arrived. Our only option in saving lives is through sound public-health policy. We are squandering that opportunity.

Confidential name reporting is conducted with 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 be afforded earlier treatment and counseling. Further transmission can be halted.

The relationship developed with public-health workers and people who are HIV-infected must be compassionate and lifelong--and it should start promptly after infection. The communicable state is for the duration of the infected person's life.

The option of reporting HIV to public health departments by cryptic code or unique identifier is unacceptable. Sanction of this dangerous policy by any public-health official, legislator or healthcare provider should chill all of us. No other communicable disease is afforded such political rights.

If we need to experiment in public health, let's at least choose a curable disease, not one that is universally fatal. The Trojan Horse, cryptic code reporting, hides the source case (and the AIDS virus) from public-health officials. It throws a giant roadblock into partner notification. It severs the relationship between public-health workers and HIV-infected people.

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 being treated for HIV" is your daughter's boyfriend.

Public health is not a punitive branch of government. And public-health services have an outstanding record of confidentiality. The time honored rule of public health is not to disclose people's 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 the patient, their friends or family.

Late-stage HIV infection (AIDS) is already reported by name in all 50 states, and with no objection. Could the AIDS activists have slept through that one?

When an opportunistic infection strikes or an AIDS-related tumor appears, we suddenly classify HIV disease as AIDS. HIV also becomes AIDS when the CD4 count of an infected person drops below 200. This is usually eight to 10 years into the disease. These criteria follow the same absurd logic of telling someone with lung cancer that he really doesn't have lung cancer until it riddles his brain or liver.

With no other illness are such arbitrary definitions used to report disease. People with CD4 counts of 200 and above also demonstrate active viral replication. These people are all communicable, yet they are ignored. And what happens if a CD4 count drops to 180 and then goes back up to 230 (and this happens all the time)? Should these reported cases be temporarily unreported, and should their sexual contacts be told not to worry? Can anyone cite another example of such medical nonsense?

When HIV-infected people go to the pharmacy to pick up 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, 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 laboratory for their HIV viral load tests and CD4 counts, the lab technicians certainly know the patient's diagnosis. Again, no complaints. County bureaucrats always know the names of HIV-infected people when AIDS Drug Assistance Program funds and housing 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.

When people die of AIDS, there is one last stop--the AIDS Quilt. Founded by the Names Project, the names and pictures of those infected are proudly and lovingly displayed to the entire world. The eternal message is that we, who have died from AIDS, are real people with real friends and real family and real names and real faces.

CDC is the official title for the federal Centers for Disease Control and Prevention. This watchdog public institution must live up to that name.

When CDC officials finally muster the courage to rescue our nation's health, they will surely face a harsh battle from the AIDS mafia. And, maybe then, people will stop dying at the altar of privacy.

--Cary Savitch, M.D., of Ventura is an assistant clinical professor of medicine at the University of California at Los Angeles. email:

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