HIV Surveillance: A Brief Disclaimer
By Jesse Chipps

Named reporting of HIV and or unique identifier reporting are parts of a complex and confusing issue, with each side having reasonable arguments, major flaws, and intense emotions. In addition, the specific issues of women have been used by both sides as an argument for their case. BABES as an organization has not taken an official position on this issue, partly because there are so many different feelings. What we do want to do, is have BABES Talking be a forum for airing the your feelings and opinions. The articles in this issue are by no means the whole story. We encourage you to read them, agree, disagree, think about it, get angry, get excited, AND WRITE! We are committed to printing articles from as many of you as care to comment

from N, a Babe

I think we all may agree that having fairly accurate information about how Prevalent HIV and AIDS is important. It is important so that we can withassurance relay to the public the seriousness of this illness and transmission. At the same time, is no less important that measures are taken to protect and respect the privacy of those having to live with this illness so that they are not put further at risk. In order to do that we,need to take the appropriate measures to glean the information needed to further educate the community without complicating the individuals lives of people just for the sake of statistical data. All the compelling reasons given do not effectively argue for name based reporting versus unique identifier reporting.

No matter how serious or urgent we relay this information to the public, it is clear to me that people are the ultimate determiners of their fate. Some people may not be knowledgeable about everything there is to know about AIDS but they are aware that is out there and yet many peoplecontinue to put themselves at risk for infection because they don't believe it will happen to them or they have little regard for their own health. So new cases of infection continue.

I have been in a number of non-HIV related research studies where unique identifiers were used to protect the confidentiality of the volunteers. These type of studies continue and are successful. Researchers continue toreceive their funding for further studies or for the term of their experiments. So unique identifiers do work and are commonly used. Besides that I would be far more secure with a list of unique identified information laying around openingly on a health care providers desk than a list indicating names and other said information about a person. The onlyperson that needs to know the person's name is the doctor dealing with that person. All information the state could ever want about John or Jane Q. Public can be sent to them, but with a unique identifier. I wouldn't be opposed to being responsible for knowing my own identifier code either or having a card for a code for when I come to see my doctor.

Some advocates complain at the complexity of using unique identifiers over names. People of this opinion seem more concerned for statical reports and information than how such information could effect the very lives ofpeople living with this illness. It may take an extra step and so whatwhen the benefits of doing far out way the opposing reasons? Research and health care providers have been using code methods for years. If it is not effective why is it still being used in other areas of research? I haven't heard of any advocating to be name specific with other research studies so why with HIV? Instead of moving backwards, canceling the unique identifier system, the questions providers need to ask themselves is what is not working and how can it be improved.

There are anonymous test available for anyone to use. As these anonymous tests are made more available it will defeat the purpose of any name based reporting instituted. In fact I would bet more people would use this form of testing to ensure their completely privacy until they are ready to seek help from a practitioner.

Knowing the name of infected persons will not help to notify those exposed unless the intent is to publicly post the names of all infected person on a bulletin board for anyone that cares to read it. Exposed person are notified only with the cooporation the tested person giving the names of their partner(s) to the health care provide to be notified!

With name reporting like anything else, names are not enough. The other part to this reporting inferred is tracking not only who has it but where geographically and "how" meaning they want to know other factors such as your sexual orientation and race. Many people have the same name. So they will want not only your name, but your address, phone number, your spouse's name, your occupation, etc. How many many times have you gone in for treatment of one simple thing and you've been asked all kinds of general questions that have nothing to do with the problem at hand?

Social Security numbers, by law, are confidential too. But how far can you get without having to give that information out? I have seen many ways in where this supposed confidential informat on was fairly public to anyone that cared to view it. So how confidential is that? Can you see this happening with HIV reporting of your health status? We all have heard the new reports on hackers linking into computer systems getting SSN and other compromising information on individuals for the simple purpose of exploitation. Information is power and sometimes information is used for the wrong reasons. Laws can be made to protect the rights of individuals but the day to day reality of how that actually plays out canbe and usually is a very different thing. Sure you have the right? But doyou have the time, energy or money to file a suit whenever you feel yourrights are being threaten or violated? Most of are just too busy trying to survive and stay as stress free and healthy as possible. Who has the time between dealing with their illness and other issues to stand up for their rights? And then sometimes the timing is of the essence and waiting for court process to render a verdict is impossible and you're forced to make a compromising decision in order to get by. So who wins out? The fear of discrimination and stigma are valid fears because we have experienced it or we know of someone who has. If discrimination is said to happen only with those that self-disclose, imagine what will happen if your health status is disclosed without your consent.

The fact remains that danger of being discriminated against or mistreated due to this illness still exists. And how do we trust the powers that be to protect our privacy or to treat us fairly as well? They are human too and they are dealing with their own fears as well. Some health care providers can be unfair, unreasonable or lack compassion. For example, there was a time when I was subjected to the biased comments or opinions of a health care provider at a clinic devoted to serving people with HIV and AIDS. I asked why they were working in a AIDS clinic given the way that felt and they told me that it was required to rotate clinics for their internship. So how do you think that made me feel being treated by that person? There I was barely diagnosed and I am trusting them with my life and to give me the best advice; thinking they are there because they care. It was clear that they didn't care. Do you think an individual like his would care to protect your privacy? My point being personal biases filter into a person's job duties sometimes and there is just no getting around it.

And where does the right to privacy and confidentiality fit in all of this? Your medical history is a very private matter and is something to be known between you, your doctor and those you TRUST to share your situation with. No amount of reporting will control this epidemic. The epidemic is controlled by a decision each of us make to play it safe and stay safe. That is the key.

Deb V

I believe names reporting inhibits people from testing for fear of their names being outed or exposed. I would be more for counting numbers than using names. Counting numbers is fine, but using names is an invasion of privacy. Why do they need names to count us?

Kim B

I have thought a lot about the idea of named reporting of HIV infected individuals in the last several months since the issue has gained steam in Washington State. I look at it both as an HIV infected woman and a health care provider. After attending public meetings and reading many journal articles on this issue, I have concluded that named reporting of HIV infected individuals should be implemented in Washington State. The time has come to stop public health approaches that serve solely to grant total anonymity to HIV infected individuals and adopt approaches that are effective in halting viral transmission.

Since the birth of epidemiology there have been basic tools that public health officials use to fight infectious disease. At the heart of this process lies named reporting. Named reporting involves the names of individuals with an infectious disease to be confidentially reported to the public health authorities. Once these names are known, then other vital steps may be taken to contain the epidemic such as the anonymous notification of those exposed persons (partner notification). This method of controlling infectious disease has been very successful in the past with epidemics such as typhoid and diphtheria and is used today for many diseases such as hepatitis, gonorrhea, and TB.

Since the beginning of the HIV epidemic these basic tools necessary to contain the spread of HIV/AIDS have not been used. This exceptionalism has not been seen in any other infectious disease this century. In Washington State, named reporting is done only with persons diagnosed with AIDS, not those with known HIV infection. The very long period from HIV to AIDS in many individuals causes precious time to be lost in the notification of exposed persons. This allows those individuals to unknowingly pass the disease to others. How can local health officials stop the spread of HIV when they don't even know who is infected?

The origins of "AIDS exceptionalism" can easily be traced back to the early 1980's when HIV was first being discovered in primarily homosexual male populations and to a lesser extent the IV drug using population. Because these groups were already a highly stigmatized population and so little was known about the pathogenesis (the progression of the disease) of HIV, strict anonymity became the general rule. This idea of strict anonymity of those infected has still carried over despite the fact that the face of HIV in the United States has changed and so many steps to protect the rights of HIV infected individuals have been established. Opponents of named reporting state that since there is a potential for confidentiality to be breached, then despite the many benefits, named reporting must not be allowed. What opponents are forgetting is that names will not be put on public display, they will be confidential. Both Minnesota and Colorado have required named reporting of both HIV infected individuals and those with AIDS since 1985. The CDC reports that there have been no breaches in confidentiality, and over 5,000 individuals have been notified of potential exposures, thus saving many lives through early detection and prevention.

The use of traditional public health approaches to HIV are very late and should have been implemented when HIV first emerged in the US in the early 1980's. Unfortunately prejudices and fears forced personal privacy to take priority over public health. This approach must stop because it is not working. HIV is spreading as fast as ever and people are still dying. Named reporting is the first step the Washington public health authorities must take to stop the spread of HIV. Only then will public health officials in Washington State begin to win the battle against this devastating virus.

Laura

I don't agree because it's stopping many people coming in to be tested. As a matter of fact in Pierce County the numbers of people getting tested have gone down because they are scared. That's something we don't' want. People are going to get back into the closet.

Julia S.

Name reporting is a loaded issue. It has so many implications and it's scary. However, we are in the midst of an epidemic that is out of control. Reporting at this stage of the game is critical if we ever hope to get a handle on this thing. Other STD’s are reportable. I remember a time when they weren't. The big picture is that we are looking at the health of the general public and, to me, that has to take priority. From the time I learned of my HIV status, I have been open about it. As a result, life as I and my family knew it was destroyed and we were made to feel like outcasts. This shouldn't happen to anyone. You would think by now the general public would be educated on the subject of AIDS; but the reality is that they are not and the horrible stigma still exists. Therefore, name reporting can not happen. It would be devastating to so many. The only thing left for us to do is report in code identifiers, and this must be done.

Summer Get Away
Deb V

I was in heaven this weekend. It's earth name is Lake Diablo and is located on the north Cascade Hwy Rte 20 East, off I-5 north in the Colonial campsite. I've never seen such extraordinary mountains And the bluest sky, the cleanest air. There were huge pine trees filling the air with pine scent. You could hear the owls hooting in the evening and flights of geese landing on the lake sunrise and sunset. If you decide to take this trip be sure to bring a big pot for boiling water available but it tastes horrible. Bring lots of food because your hungry, hungry. A Citronella candle and Off for mosquitoes. You will need wood and lots of warm blankets due to about 4pm the wind blows off the glacier And mountain tops but your evening fires bring to life a wonderful feeling of contentment

Camping meal:
2 lg pieces of aluminum foil
2 pieces of salmon steaks or fillet
carrots thinly sliced
white pearl onions (cut off ends)
asparagus (cut off hard bottoms)
tomatoes (sliced)
marg or butter
lemon juice squeezed
salt and pepper

divide fish and veggies in each piece of foil, pour lemon juice and fold each pocket to seal and poke holes. Cook on grill or in coals in less than 30 minutes. Open and eat
dispose of foil ……no dishes!!!!!