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Naming Names

Why We Don't Want Names Reporting

Winter 2000

"Names reporting, Partner Notification and Criminalization" was the title of a session held at The 1999 National Conference on Women and HIV/AIDS. "Join Two Advocates Who Have Differing Opinions On These Issues For A Spirited Discussion" was how the conference program book described this session on policy. The room was crowded before the session began and in no time there was standing room only.


Against

Eileen Hansen of AIDS Legal Referral Panel presented against Mandatory Names Reporting of individuals who test positive for HIV. Eileen Hansen's view is that Mandatory Names Reporting represents an invasion of privacy and may drive individuals away from HIV care.


For

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On the other side of the issue, Sylvia Drew Ivie of T.H.E. Clinic presented that the only effective strategy for linking individuals to HIV care services is the mandatory reporting of individual's names enforced by law.


Debate

After the two women presented their opening statements the result was a spirited debate. The audience further fueled the debate when the microphone was offered for comments. Within a matter of seconds there was a line of people waiting to offer their views and feelings on mandatory Names Reporting. I stayed for the entire session and cannot recall one person from the audience offering a comment in support of Mandatory Names Reporting. In fact, all comments made were against Mandatory Names Reporting. Many of the following thoughts expressed had the same basic theme: Invasion of Privacy.

  • If testing is not anonymous; it will deter people from getting tested. For example, the State of North Carolina abolished anonymous testing in 1994. To date, HIV testing has decreased 30 percent.
  • There is a real threat of criminalization of HIV positive individuals if a name is reported.
  • Immigrants will not test for fear that they will be deported.
  • Teenagers will not test for fear that their parents will discover they had an HIV test.
  • Public Health leaks are real: "like the 4,000 people with HIV whose names were on a computer disk stolen in 1996 from the Florida Health Department by an employee's boyfriend and sent to two Newspapers."

The purpose of either Unique Identifier Codes or Mandatory Names Reporting is to track where HIV is and to determine where resources and advocacy efforts are needed. We do not need a name in order to collect data. The government uses social security numbers to identify individuals. The Unique Identifier Code system follows the same method, but a different type of number code is used, not a name. Nonname based reporting will still allow individuals a sense of privacy and assist with tracking the epidemic.

Partner notification is currently used in states that use either Unique Identifier Codes or Mandatory Names Reporting. The name of the person infected is theoretically not given out during the partner notification process. There are three steps that are followed in the Partner Notification process. Initially during the three-step process, the infected individual may chose how to disclose their status to any partners that may be at risk. But if the infected individual does not disclose in a timely manner, the Health Department will intervene.

Step 1 -- Infected individual personally contacts and discloses to all partners

Step 2 -- Health Department advises infected individual on how to disclose to partners

Step 3 -- Health Department informs the partners of the infected individual by telling them they have been exposed to HIV (regardless if you want them to or not).


Bottom Line

The bottom line is this: If the infected individual does not disclose to their partners, the government will, and that is an invasion of privacy. Partner Notification is not effective in the women's community. For example, a woman notifying a man may risk domestic violence."A 1995 Journal of the American Medical Women's association did a study of medical and mental health care providers in Baltimore and found that 24 percent of them reported they had female patients who were victims of physical violence after telling a partner they were seropositive."

So, when the Health Department calls Mr. Boyfriend and tells him that he has been exposed to HIV. Whose ass do you think he will kick? (...Not his own...) "The majority of HIV positive women get the virus at home, not on the streets: they get it in their own bed." (Quote ICWLWA)


Civil Rights

Regardless of how the United States tracks HIV infections, it must be done without risking privacy rights. Current HIV data is important, but the privacy rights of people living with HIV/AIDS is just as important. In order to collect quality data we do not need names. We need a system that respects the rights of people. The proper use of Unique Identifier Codes could allow the government to collect important HIV data and still respect each individual's ultimate right to privacy. Access to care and treatments for all people, adequate funding for AIDS Service Organizations, and prevention programs are all needed. Collecting names does not guarantee that necessary services will be provided to people living with HIV/AIDS.

Sources: Presentation "Names Reporting, Partner Notification & Criminalization," 1999 National Conference on Women and HIV/AIDS, October 11, 1999. "Partner Racket" by Doug Ireland, POZ magazine January 1999. "Naming Names" by Annette Fuentes, POZ Magazine March 1999. The International Community of Women Living with HIV/AIDS -- Press Release, March 8, 1999.


A Positive Prospective

Silvia argues that people who are infected with HIV should report their names to the government because it will reduce the chances of other people becoming infected with HIV. She believes it should be required by law and that it should not be a personal choice.

I attended the Conference session with Tammy. (Tammy reported on the session in the previous page.) Yet, this is an issue that many of us feel very strongly about. So, I also wanted to let our readers know that some community people are willing to turn our names over. Perhaps they think their agencies will get more money if they report our names?


A Waste of Resources

I believe that names reporting will not benefit anyone. In fact, it is useless and a waist of our precious resources and money. We need to spend more money on doing research to find some medicine that will work better for those of us with this virus, or even a cure. Yes, I said "a cure." (Something hardly anyone ever talks about anymore). But, instead of spending time and money to find a cure, limited resources will be allocated to County Officials to track us down and demand to know who our past partners were and where they are now. Then they will try to hunt down our partners and get them to give them more names.


Discrimination

So, I see this issue this way: We are going to pay for our rights to be violated and to have our privacy taken away from us. Everyone who lives in this country has the right to privacy under the 4th amendment of the United States Constitution. We are supposed to have civil rights! Now that the AIDS epidemic is shifting to women and people of color, now they want our names, now they want to take away our civil rights. Don't women and people of color have a right to privacy?

If there is a law that mandates names reporting of people with HIV, believe me, it can and will be used against us. It will only become an instrument for me and people like me to be discriminated against.

Of course I do believe that my partner, or anyone's partner living with HIV has the right to know about his or her situation. However, it is our responsibility, not the governments. I think that it is the governments' responsibility to stop the spread of HIV, but taking away our rights is not going to stop the spread of AIDS. Obviously, the government has not wanted to stop the spread of HIV or the epidemic would not have gotten this far.


How to Tell Partners

The CDC should spend prevention dollars on educational campaigns -- not giving jobs to County Partner Notification programs. If the government truly wanted to prevent new infections, then I suppose that we would see advertisements everywhere warning us about the risks of HIV. We would see billboards, bus stop benches, television and radio commercials, but we don't. Instead of doing the public a service, the government chooses to take away people's rights.

We should spend our time educating others about HIV/AIDS. A bigger effort should be made on educating positive people (especially men who have sex with women) about "how to tell your partner." Maybe we should even teach the men to give several reasons or excuses to tell their partners as to why they are now using a condom. If they don't want to say that they are HIV positive, then they should come up with another reason to use a condom to protect us and themselves. We should also spend our time finding better medications to stop the virus; a cure for those of us who have it and a vaccine for those who don't in order to prevent it. This is a way that we can help to stop the spread of HIV and other diseases.

Making names reporting into a law will not bring us forward. It will only hold us back from finding the cure and educating others. It will only fuel discrimination and confusion. Silvia has a point, more people should be honest -- but, we should not have to register our names as if we are criminals. Let's not forget: "We must be ever vigilant in the search for a cure."





  
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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
 

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