Fear and confusion swept over me. "What are they talking about? What did they find in my blood?" I immediately called a friend, who is a nurse, and spoke to her about this letter from the Red Cross. Her response was; "They usually only send out those letters if you have HIV or Hepatitis." I carefully scrutinized my skin and decided that, since it wasn't yellow, I didn't have hepatitis. Furthermore, I just had an HIV test three months ago which was negative. Still bewildered, I called to make an appointment. I couldn't get in for a week. A week of confusion, fear, worry, anxiety, concern, uneasiness, apprehension, and distress.
At my appointment she tells me I'm HIV+. "No, there must be some mistake." I explained to her that I just had the HIV test and it was negative. She assured me there was no mistake. She said she would do the test again and suggested that my doctor never actually did the test. Three months ago when I had gone to my doctor for a routine physical checkup, I also asked to have an HIV test. When I later called and asked how all my test results came out, the nurse pulled my file and said, "All your test results are O.K." Elated, and never considering I had to ask about each specific test, I assumed "all test results" included the HIV test. After my appointment with the Red Cross I called the doctor and inquired about the HIV test. The nurse's response was, "Oops, we forgot to take that test, we'd better give you a refund for that charge."
It was Friday morning, I was tired from a long week and was looking forward to an easy and relaxing day. The phone rang and a stranger from the Los Angeles County Health Services Department tells me my illness has progressed and has been reported to their department. Confusion and an angry sense of invasion enveloped me. I asked what was she talking about and she explains that she can't say "it" unless I say it first. I'm thinking, "oh yeah, like there's a whole lot of confidentiality going on here." So I say "it," and she explains that I have been reported as a newly diagnosed AIDS case. "No, there must be some mistake. There must be some mistake." The words I said eight years earlier echoed in my mind. Questions came flying out of my mouth:
"Who gave you this information?" Was it _ _ _ (my health provider)? -- "Yes." Was it because I had pneumonia last month? -- She doesn't know for sure. -- Why are you calling me? -- "I want to know if you would participate in a survey." Anger and a variety of emotions started to consume me. How could my health provider report me with an AIDS diagnosis and not talk with me about it? And why does this stranger have my "confidential" information? I realized that I wanted to say "f _ _ _ you" and hang up, but that's an emotional response -- I had to try and think calmly. I asked her what the survey was for. "To help determine funding and where money should go and to collect statistics for the CDC." (Due to my emotional state I may not have heard everything the way it was said therefore, quotes may be not be exactly correct).
I felt it was important for women's issues to be documented. So I agreed to participate in the survey, but wanted to do it at the Women Alive office. She agreed and we set up an appointment. I called Women Alive to let them know she would be calling and to ask one of the staff to sit in on our meeting. I also needed to find out more information about how this totally unacceptable situation occurred and determine what needed to be done so it never happened to anyone else.
Telling someone they have crossed that line from HIV+ to AIDS should NOT come from a total stranger over the phone. I was livid with my health care provider. This must be a mistake, I had thought to myself. I had pneumonia not pneumocystis. How could this mistake happen or what is it that I don't know about my health? I was totally confused and a part of that was how emotionally devastated I was feeling. My emotional reaction surprised me, what's the big deal I've been living with HIV for eight years, so what if somebody tells me I have AIDS? Was it merely the manner in which I was told or simply eight years of denial?
I made an appointment with my health care provider and I chose someone I didn't want to yell at. He was startled in disbelief and looked through my file. "You don't have AIDS, there's no AIDS diagnosis in here." So what happened? He called the woman at the Health Department and found out who her contact was at the clinic; then all three of us met.
The bottom line is, the health care provider is given a list with names of people who the Health Department wants to contact for their survey. They ask the providers which people on the list they think would be good candidates for the survey. The problem is, the people on this list are left out of the communication loop.
Our meeting resulted in a change of policy to ensure communication with the clients concerning this survey before they are contacted by the Health Department. There was still no idea as to why the Health Dept. had me listed as a new AIDS case, but they would attempt to find out for me. So I left considering this a mistake.
The meeting at Women Alive with the Health Dept. woman (for the sake of confidentiality, she will be referred to as Ms. X), was very informative and disturbing. The "Surveillance" Dept. (a dept. within the Health Services Dept.) has the right, by California State law, to gather and maintain information on AIDS diagnosed persons. It's mandatory for hospitals, clinics, and doctors to report AIDS cases. But how much and what kind of information is given? Apparently there is a lot more than you think.
This is how I understood our conversation: The reporting of persons with an AIDS diagnosis is handled in different ways. Some health care providers submit a standard form. Others, such as my provider, choose a different method. This method of gathering data is that periodically, people from the "Surveillance" Dept. venture out to certain hospitals and clinics with lap-top computers in hand. In a search for new AIDS cases, they are given access to client files. They review the files and select personal data which they enter into their computers. That information is then downloaded into a Health Dept. office computer system, which has security access to maintain confidentiality.
Ms. X works for the Epidemiology Program, which is "kind of a part of, or extension of, the Surveillance Dept. but not really in the Dept." I think the way I understood, is that they are a part of the Surveillance Dept. so they can get clearance to access confidential information so as to conduct this survey. This survey exists because the Health Dept. wrote a grant proposal which was accepted and has been funded by the CDC since 1990. So, from within the Health Dept., names are selected from the confidential computer by specific criteria and then sorted by health care providers. A list of names is then sent to each of the health care providers for review as to whether or not the people are good candidates for the survey. How each provider determines this classification is up to them. Ms X said that my provider told her that she had spoken with either the Dr., the P.A., or had made an attempt to call the client. An example that was very disturbing to me was that a health care provider "person in charge," had given Ms. X a "blanket approval" to call anybody on their list. I suppose they don't want to be bothered with having to discuss this with their clients. I've felt the brunt of this insensitivity and it's unacceptable. The other side to this is the Health Dept. only taking a limited responsibility for their actions. When a person gets yelled at continuously from unsuspecting survey participants, a prudent person should realize this situation can be handled in a more sensitive and informed manner.
During our meeting, I asked "Ms. X" about deleting my information from the Health Dept. computer since I did not have an AIDS diagnosis. She replied "As far as the Health Dept. is concerned you do have an AIDS diagnosis." Stunned once again, I asked how the Health Dept. can give me a diagnosis when my doctors haven't. She explained that my percentage was below a certain point and just like below 200 T-Cells, it is a criterion for an AIDS diagnosis. I had never heard of this, but she assured me it was a CDC criterion. Talk about a roller coaster ride!
Are you concerned about your "confidentiality?" Want to know who has access to your "confidential" information? I recommend a lengthy conversation with your health care provider and a review of all those forms/waivers you signed (because if you didn't sign them you probably wouldn't receive medical attention). Find out if you have a "surveillance" dept. in your Health Services Dept. What is your State's law concerning confidentiality (I found out that what they are doing in California cannot be done in some other sates because of the way the law is written). If you don't like how something is handled by your health care provider ask/demand that it is changed. Fortunately it was that simple with my provider, as far as the survey was concerned. Sometimes people just don't realize their insensitivity, but are willing to change. At least the clients of my provider will not receive any more unsuspecting calls from the Health Dept.
So don't be surprised if someday, somewhere, when you least expect it, someone calls you up and says, "Smile, won't you be in my survey?"